M.E Sufferers Malta News List<![CDATA[Re: I believe there is a cure for ME - I've tested it]]> http://www.dailymail.co.uk

by Dr John H Greensmith

There are remarkable similarities amongst the stories that advocates of the Lightning Process, such as Zena Gibson (I believe there is a cure for ME - I've tested it, Letter in Daily Mail, 20 November 2008) tell: They had been desperately ill for many years, often housebound or bedridden. They had given up hope of ever getting better.

They read about or a friend told them of the Lightning Process. They were sceptical but what had they to lose. They tried it and were both surprised and delighted that it worked. In many cases, they have gone on to be trainers too.

We have to accept that the diagnosis is truly M.E. (Myalgic Encephalomyelitis) and not any other illness, having chronic fatigue, stress and/or depression, which M.E. sufferers do not routinely have and believe that it was the Lightning Process that brought about a "cure", not any other treatment or just the passage of time for the body to heal itself.

The Lightning Process has no scientific evidence to support it; is not authorised by any medical authority; is a very secretive organisation, run by a heterogeneous group of people, with no recognised qualifications and is expensive beyond the reach of most people with M.E., in receipt of disability benefits, have about the same to manage on for a whole week, as it would cost for about an hour's session with a self-styled "life coach".

If it were successful, we should be seeing a significant reduction in people remaining ill with M.E. They would be returning to work or resuming education. There is no evidence of this. I fear that stories like these raise hopes in chronically ill people which are rarely realised.

Yours sincerely
Dr John H Greensmith
ME Free For All. org]]><![CDATA[Re: Scientists develop home-testing kit for ME]]>www.dailymail.co.uk

by Dr John H Greensmith

[A similar version of this letter was sent in reply to news articles in the Daily Telegraph and the Glasgow Herald]

It is not an exaggeration to say that some M.E. (Myalgic Encephalomyelitis) sufferers, around the World, are dying for a definitive diagnostic test for this extremely disabling neurological illness, which may turn out to be a simple, cheap, effective one (Scientists develop home-testing kit for ME, Daily Mail, 28 May 2009). The onus is on those researchers, who claim to have found it; so, in the case of Professor Kenny de Meirleir's £13 urine test, we'll see what wee'll see!

Those of us diagnosed with Myalgic Encephalomyelitis, for which there is ample post mortem evidence to justify its name as a discrete neurological illness, will remain concerned that many researchers persist in bundling M.E. with a variety of other illnesses, each having different physical and psychiatric origins, under the catch-all Chronic Fatigue Syndrome. This dilutes the strength of any findings by reducing the sample size of each group, even potentially excluding M.E. sufferers altogether but then applying any weak conclusions to them.

Researchers, including Professor de Meirleir, have had "breakthrough" applied to previous work but one can see why, since people with M.E. remain ill, we remain cautious.

Yours sincerely
Dr John H Greensmith
ME Free For All. org]]><![CDATA[Re: Are we any nearer to finding a cure for ME?]]>http://express.co.uk

by Dr John H Greensmith

We won't get any nearer to finding a cure for M.E. (Are we any nearer to finding a cure for ME?, Daily Express, 23 September 2008) until we, first, separate this discrete neurological illness from other illnesses, having chronic fatigue and/or depression as symptoms (Chronic Fatigue Syndrome), which are not typical in M.E. (Myalgic Encephalomyelitis) sufferers and which pollute the findings of any research towards it.

In the meantime, the treatments being recommended for people with M.E. - Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET) - have been proved, again and again, to be either ineffective and sometimes harmful.

I beg Dr Rosemary Leonard, in particular, because her advice in your newspaper and other media is so influential but also all GPs to review the literature before referring patients.

Veteran M.E. sufferers have been warning for more than two decades that well-meaning advice to exercise has put them into a wheelchair, where they have remained, worse than before. Even the NICE (National Institute for Health and Clinical Excellence) guidelines, published in August 2007, caution against unsupervised exercise, at the gym, for example. But two studies, since then, one in the US, one in Japan, have found that graded exercise, which they do recommend, does make people worse.

In Britain, the most recent and largest questionnaire study conducted by the biggest M.E. Charity, Action for M.E., published during M.E. Awareness Week in May 2008, reported that Graded Exercise Treatment (GET) makes more than a third of sufferers worse. Yet, astonishingly, they support even more funding for it.

ME Free For All. org, amongst other M.E. organisations, believes that no treatment at all is better than one which does no good or may make you worse.

Yours sincerely
Dr John H Greensmith
ME Free For All. org]]><![CDATA[ME Guidelines a step forward but not enough]]>
Western Daily Press - www.westpress.co.uk

Sufferers of ME are angry that the Government's health watchdog has failed to recognise the debilitating condition as neurological.

The National Institute of Clinical Excellence (Nice) has issued new guidelines to doctors on how they should treat Myalgic Encephalomyelitis.

The guidance, which has taken three years to compile, says healthcare professionals should take the illness seriously. But it does not support the World Health Organisation's view that it is a neurological condition.

Instead, Nice advocates psychotherapy treatment or exercise programmes that ME sufferers say do not help the illness, which affects 240,000 people in the UK.

The affliction, also known as chronic fatigue syndrome, causes a range of symptoms including tiredness, malaise, headaches, sleep disturbances, difficulties with concentration and muscle pain.

Dr Esther Crawley, an ME specialist who is based at Royal United Hospital, Bath, and helped to draw up the Nice guidelines, said: "ME causes symptoms of varying severity and can be debilitating in children and young people. "We frequently see children who are very severely affected and unable to get out of bed".

"These guidelines should ensure that people who are severely affected have their diagnosis and care supported by a specialist, and have access to treatment."

It is hoped the guidelines will ensure that doctors take ME seriously. Nice admits "uncertainties" about diagnosing and managing the condition have "exacerbated the impact of ME" on patients and their carers in the past. In the new guidelines, doctors are told to develop an individualised management plan for each of their patients.

But Dr John Greensmith, 54, from Bristol, is concerned about Nice recommending cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as treatments. He says patients get little benefit from CBT - and GET can be dangerous.

Dr Greensmith was diagnosed with ME 19 years ago and runs the support organisation ME Free For All. "The GET programmes can push ME patients too far and they can end up in a wheelchair or bed- bound," he said.

"CBT is a psychological approach for people with depression so it makes the assumption that ME is psychological" .

"There is no evidence that either treatment works. "But I think the report is positive in that it recognises the patient. More money needs to be put into research - that is fundamental. They need to go back and look at it again."

For 16-year-old Amy Baldwin, pictured, every day is a battle to get out of bed. But since she was diagnosed with ME eight years ago, Amy has faced accusations that the aches and pains in her arms are psychological.

Her parents have been accused of being over-protective and imagining things, and doctors even said Amy was suffering from 'school phobia'. Amy missed so much schooling because of her illness that her parents decided to educate her at home from the age of 10.

"When I have a bad day I feel very sick and have aches all the time in my arms and legs," she said. "It's very restricting.

Amy's mum Sally, 46, said: "She was always very poorly and would sleep a lot and complain of aching arms and legs. "But it wasn't until I did some research myself and got in touch with the ME Action Line that I got the information and a diagnosis when she was eight years old.

"We were fobbed off by the doctor and teachers, who said it was school phobia." Amy has now earned a place at the City of Bath College to study for a media diploma.

For more information on ME, log on to www.mefreeforall.org.]]><![CDATA[Re: Jane's Flash Recovery]]>
I felt compelled to write to you regarding "Jane's Flash Recovery" (Jane's Flash Recovery, YOU Magazine in the Mail on Sunday, 22 February 2009).

Your article gives examples of numerous miraculous cures for ME by the Lightning Process and it describes Jane’s transformation in a very poetically descriptive way but is lacking a balanced viewpoint. There is so much to say in response to this article but for the purposes of this letter I have restrained myself to addressing just a few salient points.

Having had ME for eighteen years, I would love to believe there was a miracle cure and that, after three days of therapy, I could walk for miles and feel much less pain. However, this treatment is controversial because there is just no evidence (other than anecdotal) that it works and it encourages vulnerable people to pay (what amounts to a lot of money for someone on disability benefits) for a treatment where if it fails, you are told that it was your own fault for not working the programme. In addition, it treats a physical illness with what amounts to talking therapies.

These articles are popping up all over the country at the moment and the only way your article differs is that it was the practitioner rather the patient in the article, who went to train to be a Lightning Practitioner: so many of the people who publicly announce how this therapy worked for them, are now in the business of making money from it ... The cheapest form of advertising it seems to me.

I often feel pressure from family and friends to try every possible cure or therapy out there, especially following the publication of articles such as these. But, for me, a treatment like this could not only set me back financially and emotionally (from the hopes of a cure being dashed), but in fact is actually impossible to partake in because, along with many people with this severely debilitating physical illness, I am unable to undergo any therapy for three days in a row.

I have no doubt that this therapy could possibly help with some of the side issues around illness and (around simply being human) that everybody has, such as low self-esteem (and in Jane’s case, stress and depression), but then, so could a good self-help book and that is a much cheaper option. I would like to encourage fellow sufferers of this illness to evaluate the evidence before putting your trust into someone else, and your cash into their pocket.

Alice Burchfield
West Sussex]]><![CDATA[Norwich ME sufferer wins court ruling]]>
Norfolk Eastern Daily Press - http://new.edp24.co.uk

An ME sufferer from Norfolk has won a significant legal victory after a leading judge declared it “in the public interest” for the High Court to rule on claims that treatments being offered on the NHS are “potentially fatal”.

Myalgic Encephalomyelitis, or chronic fatigue syndrome, has been surrounded by controversy since the first sufferers were diagnosed in the 1980s.

The condition, which affects an estimated 250,000 people in the UK, has often been met with scorn or disbelief and dismissed as being “all in the minds” of its victims.

Kevin Short, a university graduate, of Waddington Street, Norfolk; and Douglas Fraser, of London, a former professional concert violinist with the Scottish Philharmonic Orchestra, have both had their careers curtailed by the condition's crippling effects.

Both men were outraged when, last August, the National Institute for Health and Clinical Excellence (NICE) issued new guidelines for the diagnosis and management of ME.

They say that, in its guidelines, NICE refused to classify ME as “a disease of the nervous system”, as the World Health Organisation has done, and recommended treatments which they argue are "harmful to patients" or could even prove fatal.

Mr Fraser and Mr Short took their fight to have NICE's decision overturned to London's High Court.

Barrister Jeremy Hyam, for the two men, explained that NICE guidelines recommended that ME sufferers be treated with cognitive behavioural therapy (CBT) and graded exercise therapy (GET) in an effort to alleviate their symptoms.

But, Mr Hyam told the court that, far from curing the condition, the recommended treatments could kill patients.

“There is a considerable body of evidence that CBT and GET is harmful to patients in a significant number of cases and GET may prove fatal for some patients,” he said, citing an example of one sufferer who collapsed and died coming out of a gym where they had been engaging in GET.

Mr Hyam argued NICE had failed to take into account any evidence apart from that unearthed by its controlled clinical trials, which he said were not extensive enough.

NICE had made its recommendations "based on inadequate evidence" and "failed to apply rational and consistent diagnostic criteria", he added.

"Their reasoning is irrational," he concluded, asking the judge for permission to seek judicial review of the NICE ruling.

Mr Justice Cranston expressed doubt over whether it was the court's place to rule on medical or scientific matters, but was in the end persuaded that legal issues of "great public importance" were at stake.

Giving his judgement, and granting permission to seek judicial review, the judge said: "There is no doubt that, as with any debilitating condition that a person may suffer, many of us will know someone, or be connected to someone who has ME or chronic fatigue syndrome.

“It is a serious condition and the two appellants in this case have suffered a great deal as a result of it.

“I have indicated that I am very sceptical about the way in which this claim is put. This is not a court of science, or a court of medicine, but a court of law.

“Given that there is this obvious clash between the bio-medical and the psychosomatic theories of the cause of this condition and the great public interest therein, it seems to me that this case ought to go forward to a full hearing," the judge concluded.

The case will now go ahead to a full High Court hearing at a date yet to be fixed.]]><![CDATA[Re: Jane's Flash Recovery]]>
While anyone reading Jane Flowers' story of recovery (Jane's Flash Recovery, YOU Magazine in the Mail on Sunday, 22 February 2009) would be glad for her, those of us who suffer from ME have to raise a note of caution.

ME is a neurological disease, classified as such by the World Health Organisation as such since 1969 and accepted as such by the UK Government. At present, there is no cure for ME. If there was a cure, the NHS would be offering it to sufferers.

Many converts to the Lightning Process seek to share their wonderful,inspiring stories of recovery with the world; where are those for whom the process did not work? Are they too ill to share their stories? Have they been made worse by Lightning? We do not know.

Parker glibly states he has an 85% success rate with ME sufferers. Are these figures verifiable? Where are his figures showing drop out rates, people made worse etc? Strangely, he never publishes these. It is funny though how so many miraculous recovery stories find their way into newspapers, thereby giving a commercial, unproven therapy free advertising, sometimes even written by someone connected with Parker who has an undeclared financial interest (as a letter from Vikki Rimmer appeared recently with her miraculous recovery ... although she failed to advise the readers she was working as Parker's PR agent ... more free advertising for those about to benefit financially from the promotion of an untested and unproven therapy).

Is there any other medical therapy out there that blames the patient if he doesnt get better? Well, Lightning does; Lightning will take your money (a substantial sum for those of us struggling by on benefits) and take the credit if you improve, but deny responsibility if you don't improve, or worse, get even more unwell after having had Lightning. Would those given chemotherapy accept such a basis for treatment ... that yes, chemotherapy works if you get better but, if you get worse, it's not the fault of the treatment or the fact that sometimes disease does not respond well to treatment ... oh no, it's YOUR fault for not doing the treatment properly. ME patients have enough to cope with, without being told they are to blame for the continuation of their own illness.

Parker has done no research to establish what causes ME. In fact, nobody knows what causes ME. Without knowing what causes ME, how can anyone cure it? Or even purport to cure it? The onus is on the practitioner to show valid research, reliable results, verifiable figures on how many are helped (and how long for), how many find no benefit and how many are harmed. Parker operates on stoking up false hopes in the vulnerable and sick, persuading them to part with large sums of money for an unproven therapy that is promoted widely by free advertising/anecdotal evidence, which one doubts would stand up to scientific scrutiny.

Those really concerned with finding a cure for ME would do well to donate to any of the reputable ME organisations sponsoring proper indepth biomedical research (which scandalously is given no funding at all by central government); such as ME Research UK, who are funding exciting gene studies into ME and may be on the path to finding a diagnostic tool within the next few years. It is only by funding serious scientific research into ME, its causes, its possible cures, that those of us suffering with ME have any hope of getting better.

Yours
Jenny Wilson
by e-mail]]><![CDATA[From the HFME Newsletter - XMRV, 'CFS' and M.E.]]>http://www.hfme.org

XMRV, 'CFS' and M.E.

by Sarah Shenk

There has been much media publicity lately over a small research study that claims to have made a connection between “CFS,” or "ME/CFS", and a retrovirus.  While many are touting this as a huge medical breakthrough, or even claiming that 'our battle is over' there is a group of doctors, scientists, patients and advocates who question why this research is being said to apply to M.E., when the patients studied merely qualified for a 'CFS' misdiagnosis and who view this information and the claims made about it with tempered enthusiasm or even significant concern and worry. 

Please go to this page to read this brief paper and find out WHY - http://www.hfme.org/xmrvcfsandme.htm

This page also includes a new short paper entitled: Understanding M.E. and CFS - A Brief History

]]><![CDATA[Re: When illness is mostly in the mind]]>
What about the failures?

Professor Wessely considers that CFS, an umbrella term including all 'medically unexplained' fatigue illnesses including ME, is a single illness and that one treatment i.e. CBT and Graded exercise, fits all (When illness is mostly in the mind, New Scientist, 11 March 2009).

Yet he admits that he cannot help 30% of his patients.  The recent survey by Action for ME shows that Graded Exercise made over 30% of ME patients worse even when administered by trained NHS personnel.
 
Has he considered why this is so and could they, in fact, have a different illness from the one he is able to treat? Surely the failures should give him most cause for concern and be studied carefully, and drop-outs from research trials of graded exercise should be followed up to ascertain why!

Veronica Jones
Glos]]><![CDATA[Re: Are we any nearer to finding a cure for ME?]]>http://express.co.uk

by Hilary Patten

The reason we do not know what causes the serious neurological illness M.E. (Are we any nearer to finding a cure for ME?, Daily Express, 23 September 2008) is that all government research funding millions has gone to the psychiatric profession who insist, against all scientific evidence, that it is an 'abnormal illness belief'. All applications for funding into the biomedical causes and treatment of M.E. (Myalgic Encephalomyelitis) have been turned down by the Medical Research Council.

In the UK, M.E. is the only neurological illness treated solely by psychiatric interventions. Cognitive Behaviour Therapy (CBT) has been found by patient groups to have no effect, and Graded Exercise Treatment (GET) to worsen symptoms, sometimes permanently. These questionable treatments are given to M.E. sufferers in 'chronic fatigue' clinics - an umbrella term now used to include patients with many fatigue causing illnesses, including psychiatric disorders.

In America, M.E. has been proven to have an ongoing viral. bacterial and/or parasitic cause. It has been found to always damage the heart. People who have died of M.E. have been found to have infections of their hearts, spinal cords, brains, guts and muscles. Despite this, UK psychiatrists insist that M.E. patients do not receive biomedical testing in case they should think themselves ill!

80% of patients never recover. 25% are bed or housebound, some spending their lives in darkened rooms unable to speak or swallow. premature death occurs by an average of 25 years.

The only thing making M.E. patients depressed is the stranglehold the psychiatric profession have on this physical illness, preventing patients from receiving effective testing and treatment.

Hilary Patten
Somerset]]><![CDATA[Environmental campaigner loses legal battle over crop spraying]]>http://www.telegraph.co.uk

By Caroline Gammell

Farmers can continue using pesticides near people's homes after an environmental campaigner lost her seven-year legal battle to highlight the health risks of long term exposure to crop spraying.

Georgina Downs has always insisted that residents living close to fields sprayed with pesticides are in danger of suffering from chronic illnesses such as cancer, asthma and neurological conditions.

Last year the High Court concluded that she had produced "solid evidence that residents have suffered harm to their health" and that the Government was unlawfully not following a European safety directive.

However, the ruling was overturned by the Court of Appeal. Her legal battle is estimated to have cost Miss Downs an estimated £100,000.

Outside court she said: "This judgement is a complete whitewash. I think it may well go down in history as being the most bizarre and inaccurate judgement to have ever come out of the Court of Appeal.

"The Government could not have wished for a better result than if it wrote the judgement itself.

"The fact remains that there has never been any assessment for the long-term exposure for those who live, work or got to school near pesticide sprayed fields.

"I continue to maintain (that this) is an absolute scandal considering that crop-spraying has been a predominant feature of agriculture for over 50 years."

At the age of 11, Miss Downs said she started to suffer flu like symptoms, sore throats and blistering in the mouth after growing up near a farm in Chichester, West Sussex.

Five years ago she produced a film claiming that pesticides were causing rashes, burning eyes and noses, headaches, burnt vocal chords as well as serious illnesses such as myalgic encephalopathy (ME).

Last November, Mr Justice Collins said there was "a very strong case for a buffer zone'' between spraying and human habitation.

He ruled that the Government had failed to comply with a European directive to protect people from the possible harmful effects of exposure to toxic chemicals.

The judge ordered Hilary Benn, the Environment Secretary, to rethink his department's approach to the way crop spraying was controlled and how risks to human health were assessed.

The Department for Environment, Food and Rural Affairs (Defra) challenged the ruling and yesterday the Court of Appeal overturned Mr Justice Collins' decision.

Lord Justice Sullivan sitting with Lady Justice Arden and Lord Justice Keene ruled that Mr Benn had been following guidance that gave priority to human health.

They said that although Miss Downs was "a most effective campaigner", she had no formal scientific or medical qualifications.

The panel said Mr Justice Collins's reference to "solid evidence" was substituting his own evaluation for that of Defra.

Lord Justice Sullivan said a balance needed to be struck between the interests of the individual and the community as a whole.

He ruled that Defra was entitled to conclude that it had achieved that balance by compliance with the terms of the European Directive.

Miss Downs, 35, said the appeal judges had ignored her evidence and used old official reports to reach their findings.

She said would petition the House of Lords for a hearing at the country's highest court.

After the judgement, Mr Benn said: "We welcome the Court of Appeal's judgement that the Government has complied with its obligations under European law.

"In controlling pesticides, the protection of people's health is our priority. That is why we are already working to better assess exposure to pesticides so that we can continue to improve our models.

"In view of the issues raised by Georgina Downs and the new European directive, we will consult this autumn on how to give people access to farmers' spray records, how to give residents prior notification of spraying activity, and what else should be included in our National Action Plan.

The Crop Protection Association said the judgment was a victory for "common sense", enabling farmers to provide an adequate supply of food.

The National Farmers' Union added that farmers were already confined by strict conditions over crop spraying and "any additional regulation would add further unnecessary burdens".

© Copyright of Telegraph Media Group Limited 2009









]]><![CDATA[Re: Paralympic hero returns to Stanmore]]>www.harrowtimes.co.uk

by Dr John H Greensmith

Whenever M.E. (Myalgic Encephalomyelitis) sufferers write in response to an article, like the one about Helen Freeman (Paralympic hero returns to Stanmore, Harrow Times, 1 October 2008), raising doubts about the subject's diagnosis, because if they had M.E. they just wouldn't be able to accomplish such a level of activity, they are met with a barrage of replies, sometimes abusive, sarcastic and derisory, accusing them of negativity, or wallowing and there are raised emotions and anger from other readers and, sometimes, from the subject of the piece. Incidentally, this unpleasantness tends to put some people off writing in future and the point is even less likely to be published and better understood amongst readers who may have heard about M.E. but have no direct experience of it.

I'm going to run the gauntlet and suggest that it is unlikely that Helen has M.E. on the basis that every M.E. sufferer I have ever known has in common one symptom: post-exertional malaise. This means that they have muscle pain, disproportionate to any effort expended and an exceptionally long and slow recovery rate - maybe several days - after even minuscule effort. They simply wouldn't be able to do it. Perhaps 25% of M.E. sufferers wouldn't be able to get out of their beds, or through the front door. The remainder may not be able to walk as far as the next lamp post, or the post box, let alone travel to the Olympics, never mind take part. This is the order of magnitude we are talking about.

All this is not to take anything away from the achievement of the subject, in this case, Helen; indeed, it would be an admirable achievement for a very fit and healthy person. Nor is it to suggest that they are not ill at all; in fact, they certainly are and with some illness that is no less serious or worthy of consideration and treatment. But it is to make the point that their illness is different from M.E. and, therefore, needs to be treated differently. Continuing to regard, for example, chronic fatigue illnesses as the same as M.E. is not only delaying an answer for M.E., it is not making any progress for the other illnesses either.

In order to illustrate the serious harm that can be caused by failing to discriminate amongst diagnoses, whereas there may be some value, for patients who have an illness with chronic fatigue and/or depression, from Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET) - though the onus is on researchers and practitioners to prove this - CBT has already been proven to be of no lasting benefit, without relapse, for people with M.E. and GET makes a majority worse, some irrecoverably so, after it. Yet GPs are recommended to refer M.E. sufferers for these.

Now, I hope your readers will see why M.E. sufferers are begging for appropriate funding for biomedical research to better understand the physical cause of this seriously disabling neurological illness, in the hope of suitable treatment and perhaps a cure one day.

Yours sincerely
Dr John H Greensmith
ME Free For All. org]]><![CDATA[Re: When illness is mostly in the mind]]>
If only treating Chronic Fatigue Syndrome (CFS) was as simple and straightforward as Simon Wessely (When illness is mostly in the mind, New Scientist, 11 March 2009, P.26) and, indeed, some others make out.

However a meta-analysis by Malouff (2008) shows that the hype of Cognitive Behavioural Therapy (CBT) as a treatment for CFS isn't justified. An average effect size of all the outcome measures in the studies was calculated as 0.48. This Cohen's d value is less than the 0.5 threshold generally required for a treatment to be seen as "moderately effective".

A 2008 Cochrane Review analysed the data in another way and found that, with regard to fatigue levels, 40% improved following CBT versus 26% in usual care.  At follow-up, there was no significant difference.
 
What is required to effectively treat CFS is more high quality biomedical research and less low quality psychological speculation.

Tom Kindlon
Dublin]]><![CDATA[Chronic fatigue - clues in the blood]]>
Editor Earth Times - www.earthtimes.org

Blood may be key to what occurs in the brain of those with chronic fatigue syndrome, say researchers at the University of New South Wales, in Sydney.

Study leader Andrew Lloyd, of the Center for Infection and Inflammation Research, studied the differences in gene expression patterns in the blood of people who either recover promptly after acute glandular fever or develop the prolonged illness called post-infective syndrome.

The researchers examined 6 million pieces of gene expression information for analysis in the project, known as the Dubbo Infection Outcomes Study. The study is named after the New South Wales town in which the work was conducted.

"There are very few complex diseases which have been comprehensively analyzed, with large scale and longitudinal studies, like this," Lloyd said in a statement.

"It sets a standard for highly sophisticated, comprehensive gene expression studies in the blood of all sorts of human diseases, from rheumatoid arthritis and multiple sclerosis through to schizophrenia."]]><![CDATA[Re: Are we any nearer to finding a cure for ME?]]> http://express.co.uk

by Jackie Leevers

I have just read the article (Are we any nearer to finding a cure for ME?, Daily Express, 23 September 2008) and I'd say the answer is a resounding No! At least for the NHS and Doctors who believe, as Dr Rosemary does, that ME can be treated with graded exercise Programmes.

I have had ME for several years and had been referred a number times to our local gym by my GP, despite it doing me no good and possible harm.

The exercise therapist at the gym told me that they had never had any success with ME patients and all had got worse before leaving. She told me not to overdo the exercise and kept tabs on what I was capable of and achieving. I did not get better and in fact the vast fluctuations in what I was able to do were dependent on my symptoms and not how long I had stuck with the exercise regime.

I have since repeated the experiment on a rehabilitation course with my post-heart attack husband and several other people between 15 and 40 years older than I am. I got progressively worse as the weeks went on and stopped coming after week four.

On a slightly different tack, despite the often debilitating nature of my illness, I have not suffered from depression. Neither have many of the severely effected sufferers I have met on my journey with the disease.

I agree that a treatment, or even cure, would be closer if depression is knocked off the list of symptoms, it is a pity it is mentioned at all in this context. We'd be even nearer an effective treatment if the NHS were to adopt the most effective treatment protocols used by independent doctors such as Dr Sarah Myhill. Her protocol includes a number of supplements that many patients are finding beneficial. She also advises on diet, sleep patterns, managing exercise and activity and takes a holistic approach to the condition which NHS doctors would do well to learn from. I strongly suggest that Dr Rosemary speaks to patients who are managing with Dr Myhill's support and treatments.

Jackie Leevers
Dorset]]><![CDATA[ME: Proof that it isn't all in the mind?]]>www.telegraph.co.uk

by Liz Hunt

Belgian doctors, Professor Kenny De Meirleir and Dr Chris Roelant, have developed a simple test that, they claim, solves the mystery of 'yuppie flu'.

Anna's deterioration was rapid and unrelenting. One moment the pretty, young Scandinavian woman was at the peak of youthful vitality, newly married and excited about the future. The next, that future was much diminished, her life limited to the environs of her bedroom, and dictated to by the illness that had overwhelmed her.

It had started with persistent fatigue, muscle pain, and a growing sensitivity to light after a honeymoon trip to Mexico in the summer of 2006. By December, she was in a wheelchair. Three months later she was bedridden, her face pale, her features shrunken, barely able to move or talk, and being fed through a naso-gastric tube.
 
Anna – not her real name as her identity is being protected at the request of her family – was the subject of a short film shown at a conference in London last week. Her case, according to Professor Kenny De Meirleir of the Vrije Universiteit Brussel, Belgium, illustrates the worst ravages of myalgic encephalomyelitis/encephalopathy or ME, also known as chronic fatigue syndrome or post viral fatigue syndrome.

Once it was derided as "yuppie flu" because, following its emergence in the early Eighties, its "typical" victim was, supposedly, a high-achieving young professional. ME was also assumed by many doctors, and much of the public, to be psychosomatic in origin – if it existed at all.

In more enlightened times, ME is now accepted by the World Health Organisation, and Britain's medical royal colleges, as a complex, chronic disease of varying severity characterised by a complex set of symptoms. (In addition to extreme fatigue, and general malaise, there are musco-skeletal symptoms, especially muscle pain, brain and central nervous symptoms, evidence of immune system dysfunction, mood swings, depression etc.) According to the ME Association, there are 250,000 sufferers in Britain.

The debate about the cause of ME continues to flourish at conferences, in journals and on websites: are the symptoms a physical manifestation of a problem in the brain such as a chemical imbalance; is sustained stress or exertion to blame; or is ME the result of abnormal physiological functioning, with an organic cause, such as a viral or bacterial infection, or exposure to a toxic agent?

The answer is crucial because it determines the direction of research funding which has, according to Prof De Meirleir, for too long been skewed in favour of a psychiatric approach. He hopes to change that. After more than 20 years of investigation, and having assessed and treated thousands of patients in Europe and America, Prof De Meirleir, who is an internist at the Himmunitas Foundation in Brussels (a non-profit organisation specialising in chronic immune disorders), believes he has identified a mechanism to explain the development of ME that opens up new treatment options.

In addition, he and his fellow Belgian, Dr Chris Roelant, Chief Operating Officer of the diagnostics company Protea biopharma, have developed a self-diagnosing urine test for ME. If they are correct – and that must be determined by scrutiny of their research and use of the test by other scientists and doctors – then it marks an encouraging breakthrough. The symptoms of ME are wide-ranging and occur in a number of other conditions, so a diagnosis of ME is currently reached only after eliminating other causes. "This test will tell patients that it is not a problem between their ears, but a real physiological problem," insists Dr Roelant.Prof De Meirleir and Dr Roelant have, somewhat controversially, opted to go public with their findings before publication in a peer-reviewed journal. They say this is because of the implications of their research, especially for severely debilitated ME patients. At the Invest in ME conference in London last Friday they also raised the possibility of "transmissability" of the illness in this group of patients – another controversial claim.

Prof De Meirleir has never believed that ME is an "illness of the mind". Exercise physiology was his initial area of expertise and it was in this capacity that he was asked by a psychiatrist to assess some of his patients who were suffering from a mystery illness characterised by extreme fatigue.

"One of them was a banker who started work at 9am and had to finish at 11am because he was so exhausted," says Prof De Meirleir. "He did not appear to be suffering from any psychiatric disorder."

The case ignited the young doctor's interest. During a six-month sabbatical at the University of Pennsylvania in 1990, he heard about the "Lake Tahoe epidemic". In 1984, hundreds of people living in a small town on Lake Tahoe in California succumbed to a flu-like illness. The symptoms, including fatigue, neurological and immunological symptoms, persisted in just under 10 per cent of the population (about 300). This was followed by numerous reports of outbreaks of a similar illness around the world, and persuaded Prof De Meirleir of the likelihood of a causative agent being involved in ME, a fact that has heavily influenced his research interests. Since the early 1990s, he has built up a large clinical practice in Brussels where he sees around 2,000 new patients a year. Antibiotics are a cornerstone of his therapeutic approach, as dictated by his research.

In recent years, and in collaboration with a microbiologist, Dr Henry Butt, and his team at the University of Melbourne, Prof De Meirleir has focused on bacteria in the gastro-intestinal tract. "This is an obvious place to start since 80 per cent of immune system cells are located here," he says. A healthy, functioning gut is colonised by "good" bacteria that aid digestion and contribute to our wellbeing. Many ME patients suffer from multiple intestinal symptoms, and Prof De Meirleir believes that an overgrowth of "bad" bacteria, including enterococci, streptococci and prevotella, is to blame. These bacteria are normally present in very small quantities in a healthy gut, but can initiate a sequence of events leading to the multifarious symptoms of ME if they proliferate. (This research will be published in the journal In Vivo, in July).

These "bad" bacteria produce hydrogen sulphide (H2S)– a gas naturally occurring in the body, where it has several functions – in minute quantities. However, in larger quantities, it is a poisonous gas that suppresses the immune system, and damages the nervous system, according to Prof De Meirleir. (Hydrogen sulphide is produced by some animals in preparation for hibernation because it "shuts down" the body which, in effect, is what occurs in ME.) In addition, Prof De Meirleir described how he believes the gas reacts with metals, including mercury, introduced in minute amounts as contaminants in food. The form of mercury produced after reacting with hydrogen sulphide also disrupts the normal production of energy (known as the Krebs Cycle) by individual cells, and this, he says, would explain the energy shortfall experienced by ME patients.

Normal cellular functioning is inhibited and, over time, this generates damaging free radicals, highly reactive molecules that distort the structure of key proteins, such as enzymes and hormones, necessary for chemical reactions. This results in what Prof De Meirleir calls "aberrant" proteins (or prions), which lead to further symptoms as the body is increasingly compromised, and which he says may play a role in the transmissibility of ME.

The urine test, developed by Prof De Meirleir and Dr Roelant in their privately funded research, detects the presence of hydrogen sulphite metabolites, which they say confirm the presence of abnormal quantities of hydrogen sulphide-producing bacteria. The intensity of the colour change in the urine indicates the severity of the disease progression.

Not every ME patient progresses to its most severe form, says Prof De Meirleir, but the varying symptoms can all be explained by this proposed mechanism for the disease. In the worst cases of ME, he says it can be shown that there is an almost complete eradication of "good" bacteria (such as E. coli), the presence of a high number of "bad" bacteria in stools, metal deposits in tissues, and the presence of aberrant proteins in saliva. "What we have shown is that these patients have an organic disease involving one of the most toxic substances [H2S] that exist," he says.

So what causes the proliferation of harmful bacteria in the first place? There are, he says, many potential triggers ranging from food- borne bacterial (eg salmonella) infections, viruses, and toxins, or mental stress. He says many ME sufferers have a history of gut disorders including gluten and lactose intolerance, which may predispose them to colonisation by enterococci and streptococci.

Anna, the 28-year-old Scandinavian patient, is typical in this respect, he claims; she had gut problems in the past, including possible food poisoning while in Mexico. Her treatment focuses on short courses of antibiotics to decrease the numbers of bad bacteria, treatment with probiotic supplements to help restore the good bacteria, plus vitamin and mineral supplements. "She is improving," says Prof De Meirleir.

ME support groups and the medical profession are now considering Prof De Meirleir's work. However, Sir Peter Spencer, chief executive of Action for ME, welcomed the findings: "It is always heartening to see new developments that might bring hope to the 250,000 people in the UK affected by this horrible illness, he said. "We look forward to seeing Professor Meirleir's findings published in a peer-reviewed journal so that we can develop a better understanding of this research."

Prof De Meirleir says that helping patients like Anna, of whom he has known many, is what has brought him to this point. "This has preoccupied me for more than 20 years. I told [the psychiatrists] we would find a cause, and I believe we have." There are many ME patients and their families who must hope that he is right.

• For more information on the ME urine test see www.proteabiopharma.com

 ]]><![CDATA[Re: Are we any nearer to finding a cure for ME?]]>http://express.co.uk

by Denise Longman

I write as a person who has endured this illness (Are we any nearer to finding a cure for ME?, Daily Express, 23 September 2008) for over 23 years.

I've tried everything that doctors could offer and even went on a two-year waiting list for Cognitive Behavioural Therapy (CBT). When the therapist eventually came to my house, she determined very quickly that my coping strategies and philosophy were as good as they could be and I did not need the CBT. As for Graded Exercise Therapy (GET), the idea is totally at odds with what every person with ME has learned from bitter experience. Pacing is the only way to survive and if we do push through he barriers of pain and exhaustion we end up having a backlash of deterioration that takes days or weeks to recover from.

I am still virtually housebound and in constant pain and have not been able to work since 1990. Yet according to these psychiatric professors who have soaked up all of the ME research funds from our government, there is every chance that I will get better. I don't think so!

But such is their propaganda and outpouring of pseudo-statistical medical publications, which my pension fund has quoted to me in abundance and thus refused my early retirement at age 57. They presume that sometime before the retirement age at 65, I will be able to bounce back to my physically and demanding work as a senior technician in a large university.

How convenient this is for the insurance companies who fund our pensions. Perhaps that explains their intricate involvement with doctors and academics who continue to publish these flawed CBT and GET papers in compliant journals. When so many scientific facts about ME are disregarded, and so many patients never have the tests to show just how dysfunctional their bodies and brains really are, somebody somewhere is saving a lot of money.

The short-term savings in denying this illness are a false economy - we cannot afford to have a quarter of a million people disabled and ignored. Those of us with ME deserve the honour of a proper diagnosis and a coherent government policy to ensure we live out our lives with some kind of dignity. We need neurologists and immunologists working towards a cure, but all we have are psychiatrists and counsellors who don't know a mitochondrion or a TH2 cell from their elbow.

Yours sincerely
Denise Longman]]><![CDATA[My body told me to rest: I got better by doing the opposite]]>www.theherald.co.uk

by Martin Greig

I remember the morning. It is seared in my memory. It was a beautiful summer day, the first of my holiday. A world of possibilities lay ahead - only I was struggling to open my eyelids. Swinging a leg out of bed seemed like an effort. I looked at my alarm clock: 9.15am.

I showered and had breakfast. The tiredness hung over me like a storm cloud. My girlfriend phoned to make plans; I said I didn't feel up to doing much. I could feel my eyelids getting heavy again. I put down the phone and looked at the clock: 11am. I wanted to crawl back into bed.

I wasn't overly concerned. I had started a new job three months previously and had been working flat out. It was August 2004. Around March or April that year I had picked up the flu, which I believed initially to be the start of my problems. I tried to work through it but never quite shook it off.

I moved to my new job as a sports writer at The Herald at the end of May, but as the months passed I felt increasingly under the weather. So I took a holiday. And here I was - sun shining, exhausted, but confident that a break would re-charge my batteries. I was, after all, 25, physically fit and had never been ill in my life.

By the third day, my best-laid plans had fallen by the wayside. I phoned in sick the following week, by which stage I was suffering from deep fatigue. I began to worry, so I went to my doctor and she sent me for blood tests. They came back clear. She could see I was drained and signed me off again, but there was little improvement. Thankfully, all my colleagues at The Herald, to my eternal gratitude, were very understanding.

I went back to the doctor. "We could be looking at something like malaria," she said. My jaw dropped. I sought a consultation with another doctor who diagnosed it as "post-viral symptoms", which was at least more likely than malaria, but even she could offer no remedy.

I was off for three months. By then, I had recovered enough to make a phased return - two days at first and then gradually building it up. After six months I was working normal hours, but still not back to where I had been before. I still felt more tired than I should have done and regularly experienced other symptoms - muscle tightness, pin pricks in my feet and light-headedness.

It was clear that physical exertion exacerbated my symptoms so I was worried that any form of it would lead to a relapse. The only real advice from medics and support groups was "pace yourself".

I tried other things. I ate more slow energy- releasing foods; I went to my bed early. The differences were minimal. I became increasingly concerned that I would never fully recover. By then, I had realised that orthodox medicine did not have a clue what was wrong with me or how to treat it.

Hope came from an unexpected source. A friend was suffering from a similar condition and found it even more debilitating than I did, having had to stop work completely. She had been researching the series of interrelated conditions commonly referred to as ME, chronic fatigue syndrome and fibromyalgia, and her trawl of the internet threw up something called Mickel therapy. The explanations it offered - see panel below - struck a chord so she booked an appointment. I dropped in to see her one night, as usual feeling under par.

The subject of Mickel therapy came up and she said that it had started to make a real difference to her. After three sessions, she felt less tired and more confident about the future. I was delighted for her. I left feeling much more positive and e-mailed my friend's therapist for an appointment that night. I instinctively felt that this was something which could help me. In particular, two things I liked were that it did not involve any medication and was not psychotherapy. I attended my first session a few weeks later with a Mickel therapist called Lynda Carnochan.

The theory is that the symptoms of the "energy disorders" - currently labelled variously as ME, post-viral fatigue syndrome, chronic fatigue syndrome, fibromyalgia, and many more besides - are caused by a malfunctioning hypothalamus gland. Treatment involved a series of one-hour sessions during which I learned why my symptoms were there and how to work with them to regain my health.

What struck me was how practical Mickel was. It required dedication and decision-making, but I was prepared to do anything to improve my situation.

Like my friend, after three or four sessions I noticed a difference. I would still have bad days or weeks but the length between them was increasing. I started to build things back into my daily routine that I would never have contemplated previously, like physical exercise and socialising.

The process reminded me of an episode of the sitcom Seinfeld. In an episode called The Opposite, Jerry's best friend George Costanza attempts to turn his life around by doing the opposite from what his head tells him to.
Instead of being intimidated by beautiful women, he approaches them. Instead of being subservient to his boss, he challenges him. As a consequence, his life turns around for the better.

When experiencing symptoms my head had always told me to rest. I realised, through Mickel, that doing so only caused my symptoms to escalate. So I did "the opposite", exciting, life-enhancing stuff that sparked positive emotions. I was apprehensive at first, but I soon started to feel like I had a life again and gained confidence from not suffering setbacks.

One night out in particular sealed it for me. It was my friend's birthday. The drink was flowing and all seemed right with the world. At one point, I looked at my watch and noticed that it was 5am. I had been partying all night and felt great. I went to my bed for a few hours, woke up early afternoon and still felt fine (apart from a bit of a sore head). In the past, I would not have gone out at all, expecting to have experienced tiredness for several days at best afterwards. I was getting better.

That was last year. The symptoms have continued to diminish. Even if they do raise their ugly head, I now know how to respond to them so that my body no longer needs to create them. Seven sessions later and six months on, I am back living the kind of active life that a 29-year-old should. It is all thanks to Mickel Therapy.

It was developed by a Scottish doctor: so what is Mickel therapy?

Mickel therapy is a ground-breaking new treatment for a wide range of chronic health conditions including chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS) and fibromyalgia (FMA). Developed by Scottish medical doctor Dr David Mickel, pictured, the treatment involves no medication, dietary change, supplements or psychotherapy of any sort - Mickel therapy is unique, in a genre all of its own. Treatment involves a series of sessions during which clients learn why their symptoms are present and, crucially, how to work with them to regain their health.

What does Mickel therapy believe causes CFS/ME/FMA and related conditions?

Mickel therapy is underpinned by the hypothesis that the conditions of CFS, ME, PVFS and FMA are created by a dysfunction of the hypothalamus gland.
However, Mickel therapy recognises the conditions of CFS, ME, PVFS and FMA as being purely physical and not psychological in nature.

How does Mickel therapy work?

Until Mickel therapy's hypotheses and process are studied properly then the answer remains unclear. However, the results show that it does. Dr Mickel believes a whole range of chronic health conditions are created, and subsequently maintained, by the effect of negative primary emotions such as anger, fear and boredom on our physical cells. These are primal, instinctive emotions that are being created spontaneously in our mid-brain without cortical or "thinking brain" activity. Unfortunately, in our modern world, increasing numbers of people have stopped responding to these negative primary emotions, which ultimately manifest themselves in physical symptoms.
Mickel therapy reunites clients with these emotions and coaches them in the constructive handling of them, to leave them symptom-free.

What does Mickel therapy involve?

# Trained practitioners meet sufferers in a series of face to-face-sessions lasting one hour. All practitioners are supervised following each and every session, thus ensuring a high standard of therapy across the board. What proof exists that Mickel therapy works? Mickel therapists point to the testimony of more than 1000 clients who report a full return to health - a 92% success rate. This, of course, requires validation by approved research.

The Mickel team would welcome such research, and want to have Mickel therapy properly studied. To find a practitioner in your area visit www.mickeltherapy.com

# Dr David Mickel will give a one-hour introductory talk about the therapy on Saturday, May 17, in Glasgow. More information from Lynda Carnochan on
07866 454064 or at lynda@mickeltherapy.com]]><![CDATA[Re: Are we any nearer to finding a cure for ME?]]>http://express.co.uk

by Tom Kindlon

It is good that Dr Rosemary Leonard raises awareness of ME (Are we any nearer to finding a cure for ME?, Daily Express, 23 September 2008): early diagnosis has been shown to improve long-term prognosis.

However, whenever Graded Exercise Treatment (GET) is mentioned with regard to ME, people need to be reminded that people with ME have to be very careful with this management strategy. Numerous surveys have found that a percentage of patients have been made worse following exercise programmes.

Tom Kindlon
Information Officer
Irish ME/CFS Association
PO Box 3075
Dublin 2
Ireland]]><![CDATA[Re: Defeatism undermines treatment of Chronic Fatigue Syndrome]]>http://www.imt.ie

by Dr John H Greensmith

It is hardly surprising that psychiatrists such as Dr Alastair Santhouse hold the view that, "treatments such as cognitive behavioural therapy and graded exercise therapy have also been shown to work in CFS/ME and are recommended by the National Institute for Health and Clinical Excellence" and that, therefore, "the alternative to treatment is often no treatment at all and this can have a disastrous effect on the patient ..." (Defeatism undermines treatment of Chronic Fatigue Syndrome, Irish Medical Times, 24 February 2010 - http://www.imt.ie/clinical/infections-immunology/defeatism-undermines-treatment.html) because the majority of those who recommended and also practise them are qualified in psychiatry.

In fact, the very latest research review (Twisk and Maes, September 2009) confirms the findings of every previous study - including those of the same people advocating and practising these treatments - that CBT/GET is not only ineffective but potentially harmful for many patients with M.E. I think you would only have to be qualified in common sense, therefore, to conclude that it would be preferable to have no treatment than one which does you no good (CBT), or one that may make you worse (GET).

Of course, it shouldn't only be a choice between this monopoly of treatment or none at all. The sensible approach would be to put the horse of research, to understand what is required, before deciding the cart of treatment to be given because it is all you have in stock and, in the meantime, the best care that a person with M.E. can have is from a sympathetic GP offering support and treatment for symptom relief until a safe effective treatment is available.

Yours sincerely
Dr John H Greensmith
ME Free For All. org]]><![CDATA[The silent pain of ME]]>http://www.independent.ie

By Sarah Spendiff

FOR Corina Duyn, the loneliness is the worst aspect of her illness. The former doll maker and teacher from Lismore in Waterford has spent nearly a decade alone in her bedroom unable to leave due to her debilitating ME.

Astonishingly, Corina is one of the lucky ones as many others with this condition fail to even get a diagnosis of what's wrong with them. Corina says: "I feel so alone in this illness at times. Nobody really understands what it is like to have this mysterious disease and those that do don't know how to help me. I am sad for myself and sad for the position that I and lots of other people are in, who find themselves at the mercy of the health service."

Up to 12,000 people suffer from ME/CFS in Ireland although, due to the difficulty in diagnosing it, the number could be much higher. ME stands for Myalgic Encephalomyelitis and has been around since the 1930s, but in the 1980s it became a media topic with the disease being given the unwelcome moniker of 'yuppie flu'.

This was due to the flu-like symptoms sufferers reported and because many of those who became ill were high flyers so it was considered a kind of burn-out.

To this day many sufferers find it difficult to be taken seriously and even when they are, there is little the medical profession can do for them because there are few credible treatments available.

The condition hit headlines again at the end of last year after Lynn Gilderdale died of a suspected morphine overdose following a 17-year battle with the illness. Her Irish-born mother Kay was subsequently arrested and accused of her assisted suicide, having nursed her bed-bound daughter over the years. Kay has been bailed and the case will be heard later this year.

Preconceptions

Kay has campaigned for greater awareness of the condition for many years because many myths and preconceptions still exist.

Part of the problem is the issue of whether the origin of ME lies in a psychological cause or in the physical. This question has divided the medical and patient community for decades. In 1969, the World Health Organisation classified ME as a neurological disorder, which makes it a physical condition; and patient groups such as the Irish ME Trust and the ME Association also believe it is a physical condition with very real physical symptoms.

However, a UK survey revealed that 50pc of GPs do not believe the condition exists and although many Irish patients say their GPs are sympathetic they are also told there is very little they can do for them.

One of the issues is that there is no diagnostic test to determine if a patient has ME, which leaves some sufferers in a medical void.

For those who are diagnosed after a long process of eliminating any other possible condition, the first line of treatment is often therapy, known as Cognitive Behavioural Therapy (CBT), or gentle exercise called Graded Exercise Therapy (GET), -- although some patient organisations think anti-virals or other medication would be better.

Another reason for this situation is that, in 1988, ME was reclassified as ME/CFS to include chronic fatigue syndrome and is now an umbrella condition incorporating illnesses such as fibromyalgia, fatigue and even depression. For people with those disorders, the recommended treatment of CBT might be useful, but for others with chronic pain and immobilising fatigue who are at the extreme end of the ME/CFS spectrum, they find the suggestion of therapy instead of medicine and science insulting.

Tom Kindlon of the Irish ME/CFS Association says: "ME sufferers in Ireland are largely ignored. Nobody wants to take responsibility for them. There have been no scientific studies into the condition in Ireland for over a decade.

"Part of the problem with ME is that a lot of the suffering is invisible."

In the UK, following on from a report from the CMO (Chief Medical Officer), £8.5m was made available for treatments to help those with ME/CFS. However, the treatments have followed the lines recommended by psychiatrists and tend to be CBT.

Tom says: "Our members have consistently told us that any exertion beyond what they are capable of produces a serious deterioration in their health. The idea that you could gradually get better through exercise is so seductive that most patients have tried it.

"Some are lucky and stop fairly quickly after they realise their symptoms come back if they try to keep going. Others keep pushing themselves even when feeling bad and eventually this leads to a relapse."

Therapist

Kay Mclaughlin (39), from Ballinteer, Dublin, says that the 'gentle' form of exercise prescribed for her by her doctor and administered through an occupational therapist nearly "finished her off altogether". The former autistic therapist, who was diagnosed with ME/CFS five years ago, says: "The woman couldn't understand that I wasn't able to do it. She would look at me as if I were mad.

"It was only small stretches and bending but after she left I found I could barely move at all and would have to stay in bed. After a few sessions, I got my husband to send her away."

There are several patient surveys that highlight how many ME/CFS sufferers find GET to have a negative affect on their recovery. Despite this, in the UK, GET and CBT are the only recognised forms of treatment for patients which are recommended by the NICE (National Institute for Clinical Excellence) guidelines. This has led to a judicial review of the guidelines being brought by two patients and supported by some medical professors and scientists.

They claim that NICE has not considered all of the information available to them when drawing up the guidelines and that the evidence they did draw on is flawed. The case will be heard next month and, according to Declan Carroll of the Irish ME Trust, the outcome will have repercussions here, too.

"Our Department of Health will generally follow the line of thinking in the UK. We believe the psychiatrists wield a disproportionate amount of power when decisions are made on what research should be funded; therefore, coping strategies which come to the fore are CBT and GET," he says.

According to Declan, after much lobbying of the previous health minister, Micheal Martin, the Health Service Executive (HSE) set up a steering group to examine the 'best care treatment pathways' for people diagnosed with ME/CFS.

"A researcher and assistant were appointed and met periodically until September 2007," Declan says. "A final draft report was compiled following interviews with ME sufferers, completed questionnaires and an examination of the international experiences in other jurisdictions. However, we were disappointed with the result.

"We felt that this report was slanted towards the psychological bias and we could not justify supporting it."

He says that without signing off on it the report, treatments remain in limbo; but he says that is better than being in hell, which would be the case if GET/CBT became the only endorsed form of treatment for ME/CFS in Ireland.

This is a point Annemarie Buckley (43), from Waterford, agrees with wholeheartedly. Having been diagnosed with ME/CFS 13 years ago, Annemarie was encouraged to exercise by her GP.

"I was delighted to do it," she says. "I joined a gym and went there with my mum. I only did a tiny bit, in about two-minute instalments, but I found that a few days later I couldn't get out of bed.

"There is a delayed reaction to exercising when you have ME but I think that it knocked my recovery back months. I believe that pacing is the only thing that works, which is listening to your body and not doing more than you can manage. I fought against my fatigue and that is the worst thing you can do."

Assistance

After nearly a decade in the ME/CFS wilderness, Corina Duyn is starting to regain some freedom and is now able to leave her house with assistance from a wheelchair. She says that the condition is one of the hardest and darkest the body can take but despite this she didn't let it defeat her.

"I spent so much time alone, unable to read or even to move very much, that I began to notice my surroundings in a unique way. I think it is this that inspired much of my artwork."

Having endured so much, Corina has channelled the experience into creative projects, such as short stories and paintings, that can be viewed on her website www.littlewings.org.

At its worst, the illness caused her so much pain she needed to lie on a pile of duvets on her mattress or get a friend to build a bridge with pillows over her legs so the covers didn't inflict more pain. After her stay in hospital to investigate her condition, the physiotherapist offered her a rubber band to use for exercise.

"I have lived through this disease without any essential support. A rubber band to exercise my muscles is not going to help me overcome the physical obstacles I have to face. I feel let down by the health service."

While the medical profession continues to debate the most suitable forms of treatment for ME/CFS sufferers, new research is continually throwing more light on the condition and its possible cause.

With greater understanding of the cause comes the hopeful possibility of a cure. For many in the first grip of this potentially debilitating condition, the cure cannot come soon enough.

Irish ME/CFS Association, 01-2350965, info@irishmecfs.org

Irish ME Trust, Lo-call 1890 200 912, info@imet.ie]]><![CDATA[Row over therapy call for CFS]]> www.pulsetoday.co.uk

NICE guidance on diagnosing and managing chronic fatigue syndrome has reignited a long-running controversy over the root cause of the illness by advising treatment with psychological therapies.

The guidance calls for PCTs to provide cognitive behaviour therapy and exercise treatments among other treatment options – and should give ammunition to GPs battling to help patients with the condition.

In addition to recommendations that severely affected people should get specialist help at home, NICE says CBT and graded exercise therapy should be offered for mild to moderate CFS/ME – to criticism from an ME patient group.

Action for ME said the recommendations placed 'undue emphasis' on psychological and physical therapies and criticised the failure of the guidance to recognise CFS as a neurological disorder.

NICE says a diagnosis of ME should be made after four months of symptoms with no other apparent cause in adults and three months in children. GPs are also given recommendations for giving advice on managing activity, rest periods, sleep patterns, diet, assessing fitness to work and effects on education. Children with symptoms of ME should be referred to a paediatrician within six weeks, according to NICE.

Professor Peter White, professor of psychological medicine at Queen Mary’s School of Medicine and Dentistry in London, said on the basis of current evidence there was no alternative to psychological and physical treatment. 'The guidelines are a major step forward and provide for the first time reliable advice and information for GPs. 'The major issue has not been how to treat it, it’s been that patients can’t get the treatment because there’s no CBT or physiotherapy available in vast areas of the country.'

GP academic Professor Richard Baker, chair of the guideline development group and head of the Department of Health Sciences at the University of Leicester, said: 'Care for people with ME has varied wildly and in some cases has left people feeling their illness isn’t recognised by the healthcare system.'
pulse@cmpmedica.com

Symptoms of CFS/ME
• Debilitating fatigue brought on by minimal activity
• Malaise
• Headaches
• Sleep disturbances
• Difficulties with concentration
• Muscle pain Symptoms vary and may fluctuate in intensity and severity.

Source: NICE]]><![CDATA[Re: Jane's Flash Recovery]]>
It is nice to hear about somebody whose quality of life appears to have improved following a treatment (Jane's Flash Recovery, YOU Magazine in the Mail on Sunday, 22 February 2009).

However numerous treatments have been touted for ME over the years and the only effect of many of them has been to been to reduce our members' savings.

Regarding Lightning Process (LP) specifically, no trials have been published and the theories proposed about why it might work seem speculative.

Such scepticism might be ignored but for the fact that we have heard of numerous people who relapsed following using it. This is demonstrated in the results of a survey the UK ME Charities AfME and AYME organised in 2008: of 100 people with ME who had tried LP, 16% had been made worse by it.

Until research isolates who are the people at risk, we recommend caution.

Tom Kindlon
Information Officer
Irish ME/CFS Association
PO Box 3075
Dublin 2]]><![CDATA[Mystery Deepens How Long Has XMRV and SAIC Been Involved?]]>www.veteranstoday.com

by Denise Nichols

SUMMARY: The inventions listed below are owned by an agency of the U.S.
Government and are available for licensing in the U.S. in accordance
with 35 U.S.C. 207 to achieve expeditious commercialization of results
of federally-funded research and development. Foreign patent
applications are filed on selected inventions to extend market coverage
for companies and may also be available for licensing.

To read the whole article, please go to:
http://www.veteranstoday.com/2010/08/27/mystery-deepens-how-long-has-xmrv-and-saic-been-involved/]]><![CDATA[Stomach virus 'may trigger M.E.']]> http://news.bbc.co.uk

US researchers have produced compelling evidence linking chronic fatigue syndrome to a stomach virus

The researchers examined 165 patients with chronic fatigue syndrome - also known as M.E. (myalgic encephalitis) - and long-standing gut complaints.

More than 80% of samples were infected with an enterovirus, compared with just seven of 34 samples taken from healthy volunteers.

The study is published in the Journal of Clinical Pathology.

"The findings raise the question of whether antiviral drug therapy would be beneficial"
Dr Charles Shepherd
M.E. Association UK

The finding may help explain why many patients with M.E. often have intermittent or persistent gut problems, including indigestion and irritable bowel syndrome. Viral infections, such as Epstein Barr virus (glandular fever), cytomegalovirus, and parvovirus, are also known to produce many of the symptoms associated M.E.

Enteroviruses, which infect the bowel, cause severe but short lasting respiratory and gut infections. There are more than 70 different types, and they head for the central nervous system, heart and muscles.

The researchers found that in a significant proportion of patients the initial enteroviral infection had occurred many years earlier.

Drug possibility
They said: "Although finding a chronic infection of the stomach may not directly prove a similar infection in the brain, muscle or heart, it opens up a new direction in the research for this elusive disease."

Dr Charles Shepherd, medical adviser to the M.E. Association UK, said the study would re-open the debate into whether persistent viral infection plays a role in the condition. He said: "We know from previous research that enteroviruses, the group of viruses being investigated in this study, can trigger ME/CFS in some people.

"There is also some evidence that enteroviral infection can then persist in various parts of the body including muscle and brain - a finding that could help to explain why muscle and brain symptoms are so characteristic of the illness.

"The new clearly adds weight to this theory. The findings also raise the question of whether antiviral drug therapy would be beneficial in this particular sub-group of ME/CFS patients."

© BBC MMVII]]><![CDATA[Family’s relief over doctor verdict]]>www.shropshirestar.com

by Sophie Bignall

A Ludlow couple today spoke of their relief that “justice has been done” following news that a pediatrician who treated their son has been struck off.

Janet and Robin Alexander said “a powerful condemnation” had been made during an appeal which resulted in Dr David Southall being struck off on Friday after he lost his High Court battle against the decision.

The General Medical Council’s (GMC) fitness to practise panel decided in December 2007 that he abused his position by accusing a mother, referred to as Mrs M, of drugging and murdering her son.

Mrs Alexander, who attended the hearing with her son Lawrence, now 22, was one of a number of other people who had complained to the GMC about Dr Southall.

She believed that Dr Southall’s failure to correctly diagnose Lawrence’s illness directly contributed to a decline in his health.

Lawrence was first treated by Dr Southall when he was five months old in 1987.

Mrs Alexander said her son had been a near-miss cot death baby.

She said he had been frequently ill and was taken to London’s Royal Brompton Hospital, where Dr Southall allegedly declared that there was nothing wrong with him.

She claimed that Dr Southall had made Lawrence a ward of court and had suggested that she and her husband Robin had harmed him.

Now she said the family could enter a fresh chapter in their lives.

She added: “It was a total relief.

“We first made our complaint to the GMC in 1987. Since then we have carried this great weight of responsibility.

“Finally that weight has lifted.

“It does condemn him once and for all.”

Lawrence, who lives with his parents, has suffered chronic fatigue syndrome, a connective tissue disorder and heart problems, for the past seven years.

He still requires daily care and is registered as disabled.]]><![CDATA[Lynn Gilderdale: how a 14-year-old was condemned to a life lived from a bed]]>Telegragh UK - www.telegraph.co.uk

by Caroline Gammell

At the age of 14, Lynn Gilderdale was the picture of health. Sporty, athletic, she excelled at ballet, pursued her love of horses with vigour and was an accomplished musician.

To read more, please go to:
http://www.telegraph.co.uk/news/newstopics/politics/lawandorder/7074234/Lynn-Gilderdale-how-a-14-year-old-was-condemned-to-a-life-lived-from-a-bed.html


]]><![CDATA[Can Those with an Invisible Illness Park in the Blue Spots without Others Seeing Red?]]>http://www.christiannewswire.com

OPINION by Lisa Copen

"Do you know the fine for using someone else's handicapped parking permit is $300?" "That parking spot is saved for the disabled! You should be ashamed of yourself!" Nearly everyone with an invisible illness has been told, "You don't look disabled to me!" One of my friends replied, "Well, you don't look stupid to me." I just bite my lip to try to prevent the tears from forming, broken-hearted that I appear to be deceptive, when I would do anything to give back this parking perk that I use on a rare occasion.

As I circle the parking lot a fourth time on this day I hope for a spot to open up within two-hundred yards of the store, but there is nothing remotely close at this bustling superstore where I need to buy my prescriptions and milk for my toddler. My rheumatoid arthritis is flaring badly, causing extra fluid in my knees to dislocate pieces of loose bones. Every step is painful and unpredictable.

Finally I sigh in resignation and pull into the farthest "blue parking spot." I reach for the placard--the one that has a bold white symbol of a wheelchair--and no, I don't have a wheelchair--yet. So after fifteen years of having this "privilege" at my disposal I still warily scan the area before reluctantly dangling the placard from the rear view mirror. Is there anyone watching, wondering, or waiting, ready to confront me?

I've had scathing notes left on my windshield and many people, empowered by television exposés, have approached me with their opinions. Judgmental expressions and whispers sting just as much. My husband and I adopted a baby and when I would get my child of the car I would avoid eye contact with onlookers because I could hear their whispers of, "She's not disabled! Or--if she is--she has no right to have a child!"

Nearly 1 in 2 Americans (133 million) live with a chronic illness. It could be diabetes, cancer, cystic fibrosis, fibromyalgia or even chronic back pain. Many illnesses make walking long distances impossible because of limited lung capacity, physical pain, or unpredictable numbness in the legs. According to statistics provided by the U.S. Census Bureau, about 96% of these illnesses are invisible. There is no sign of the illness existing, nor the use of an assistive device like a cane or a wheelchair.
 
I began National Invisible Chronic Illness Awareness Week in 2002, which is held this year Sept 10-16, 2007, after witnessing thousands of people who had frustrations, fears, loneliness, and bitterness, about feeling invalidated. One's illness, age, diagnosis, or level of disease degeneration, doesn't change the emotional pain.

Strangers and loved ones alike doubt the severity of our illness or even the diagnosis. We've heard, "You look so good! You must be feeling better." But we don't feel better. We just bought some fake tan in a bottle and pasted on a smile.

National Invisible Chronic Illness Awareness Week is a time to acknowledge that invisible illness is more prevalent than we'd imagine and everyone--both those who are healthy and ill--can make a difference by encouraging someone with an invisible illness, rather than tearing someone down.
 
Are those parking spots painted blue because they give so many people the blues? That small area of square footage is a breeding ground for many frustrations as we are forced to defend our illness and character to total strangers. I'd gladly trade in my placard indefinitely for just a week of having my old body back when I could run, sit on the floor, or even hold a fork without tendons popping out of place.

I anticipate the day when a nationally designated system is formed. Texas law states that blue placards are for those who use assistive devices; red permits are for people with a "condition that impairs mobility." In other states, red symbolizes six months of disability and blue is permanent. It's confusing! And for one with invisible illness, the wheelchair symbol discredits both our physical pain and--in the eyes of others--our reputation. Until then, we rely on Invisible Illness Week bumper stickers.

The next time you see a healthy looking man loading groceries into his car--parked in the "blue spot"--don't glare. Stop and offer to help him, or just smile nicely, giving him the benefit of the doubt. Seventy percent of suicides have uncontrollable physical pain as a factor. Your smile may save his life. At the least, it will astonish him, perhaps providing him with genuine encouragement he hasn't felt for months.

Lisa Copen is the founder of National Invisible Chronic Illness Awareness Week, www.invisibleillness.com, and author of "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend." She is the founder of Rest Ministries which has served the chronically ill with spiritual support for ten years.
Contact: Lisa Copen, 858-486-4944]]><![CDATA[Re: When illness is mostly in the mind]]>
Good science is impersonal. Neither Professor Simon Wessely, nor anyone else, should be personally attacked for their beliefs. I suspect, however, that a large proportion of what he calls his "hate mail" is actually not about him but the quality of his science which, as he says, is what one stands by and, many think, he falls by.

You can see why someone, who has been chronically ill for decades (perhaps including this Research Psychologist, diagnosed with M.E. for 21 years), might be more than a little frustrated when he says that they have a desire to remain ill (When illness is mostly in the mind, New Scientist, 11 March 2009). It doesn't seem very logical to want to continue with no job, scratching by on benefits and being socially isolated, on top of the pain of the illness itself. Yet that's what M.E. (Myalgic Encephalomyelitis) sufferers are suspected of doing.

Better understanding of M.E. should come by excluding other illnesses but, with its re-classification within the more general Chronic Fatigue Syndrome (CFS),  there are a greater number of variables to disentangle and, bundled with several other illnesses, some of which may have a psychiatric origin, patients' income, as well as entitlement to insurance and health care might be adversely affected.

Professor Wessely's influence, as an adviser, has contributed to the establishment of a network of clinics, of which his is often regarded as a flagship. It's hard to scientifically justify the monopoly of the two treatments on offer, since all the research, some of it conducted by the very same people who continue to advocate them, shows that one, Cognitive Behaviour Therapy (CBT) has no lasting benefit, without relapse, for people with M.E. and the other, Graded Exercise Treatment (GET) makes a majority worse after it, some irrecoverably so. While all government funding is spent this way, there is nothing for promising biomedical research, which has to rely on charity or remain undone.

I wonder what Professor Wessely thinks of equally qualified doctors and professors, all over the World, who are calling for the re-adoption of the name Myalgic Encephalomyelitis, recognise it as a discrete neurological illness with a physiological origin that needs further research, see no particular need for his speciality and I wonder what sort of mail they get?

Yours sincerely
Dr John H Greensmith
ME Free For All. org]]><![CDATA[Re: Learning to live with challenges of chronic fatigue one day at a time]]>
If Christine Milner (Learning to live with challenges of chronic fatigue one day at a time, Yorkshire Post, 4 March 2009)  has chronic fatigue, or if she has M.E. (Myalgic Encephaolmyelitis), she will be one of the estimated 240,000 people with CFS/ME in the UK but we won't know which one of them she has until we have a definitive diagnostic test for M.E. to separate it from the indiscriminate Chronic Fatigue Syndrome, which contains several illnesses, with various physiological and/or psychiatric causes.

Although they are routinely taken to be synonymous or interchangeable, since being welded together as CFS/ME, they are not the same at all. M.E. sufferers do not have fatigue, as we normally understand it. It does not come on, as tiredness usually does, with physical or mental effort, nor is it refreshed by any amount of sleep. If they mention the word at all, it is always way down the list, after muscle pain, swollen glands, cognitive dysfunction, dizziness, amongst a range of symptoms that fatigue just does not cover.

This unwarranted swallowing up of M.E. in the catch-all CFS is delaying progress in research, not only for M.E. but also all the others, denied their distinctiveness. Worst of all, if treatments - such as Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET) - are recommended as helpful for a majority in this heterogeneous sample, it may be that they are ineffective or even make things worse for M.E. patients.

Fortunately, some influential and respected researchers, from around the World, have realised these serious research design flaws and are calling for the re-adoption of Myalgic Encephalomyelitis, which is as solid as it was when coined by Dr Melvin Ramsay in the fifties and recognised by the World Health Organisation, since 1969, as a seriously disabling neurological illness and which merits study in its own right.
 
Yours sincerely
Dr John H Greensmith
ME Free For All. org


]]><![CDATA[Re: When illness is mostly in the mind]]>
As a doctor with no mental health problems who developed ME/CFS as a result of a chickenpox encephalitis I can fully understand why people with this illness feel so angry when it is flippantly described as '...almost all in the mind' or 'How people can think themselves sick' (When illness is mostly in the mind, New Scientist, 11 March 2009).

Having an inaccurate or derogatory psychosomatic label attached to a condition creates all kinds of practical problems for patients - inappropriate or harmful treatments and refusal of certain benefits in particular - as well as discouraging biomedical research into the underlying cause.

Fortunately, there are clinicians and researchers who believe that ME/CFS has a solid physical basis involving infection, immunology, endocrinology and neurology.  As a result, the Medical Research Council has just set up an Expert Group to look at these areas of causation.

When it comes to treatment, The ME Association has just completed analysing the results from the largest survey of patient opinion ever carried out (4,000+ respondents).  Not surprisingly, these results clearly show that over 50% report that behavioural treatments such as cognitive behaviour therapy (CBT) and graded exercise therapy (GET) are either ineffective or harmful.

So please can the New Scientist return to the more objective position it took in 2006 (1) when it reported on neurological abnormalities in the spinal cord (ie dorsal root ganglionitis) in a 32 year old woman who died as a result of having ME and in 2005 (2) when it reported in abnormalities in gene expression - neither of which could possibly be caused by abnormal thought processes.
 
Yours sincerely
Dr Charles Shepherd
Hon Medical Adviser
ME Association
7 Apollo Office Court
Radclive Road
Gawcott
Buckinghamshire
MK18 4DF

Website: www.meassociation.org.uk

REFERENCES:
(1) Hooper R.  First official UK death from chronic fatigue syndrome.
New Scientist, 16 June 2006.
(2) Hooper R.  Chronic fatigue is not all in the mind.
New Scientist, 21 July 2005]]><![CDATA[Re: Devoted mother charged with attempted murder of paralysed daughter who was bed-ridden for 17 years]]>www.dailymail.co.uk

by Karen Rippon

How can it be in the public interest to waste time and money charging a loving and devoted mother like Kay Gilderdale (Devoted mother charged with attempted murder of paralysed daughter who was bed-ridden for 17 years, Daily Mail, 16 April 2009)  with the attempted murder of her chronically ill daughter, Lynn?

Surely the public would be far better served and the money far better spent, by finding out what causes this devastating physical illness and finding a cure for the rest of us who are still suffering with it.

I haven't got ME anything as bad as Lynn (i.e. I am not bedbound or housebound all the time) but know of two others who are. Even so, it has devastated 13 years of my life and has prevented me from having children and living a normal life.

Karen Rippon
Cardigan
Ceredigion]]><![CDATA[Lynn Gilderdale's moving account of why she decided to end her life]]>www.timesonline.co.uk

OK guys, I have something really important to say. I want to talk about something extremely private and personal to share with you, my closest friends. After many years of serious deliberation, I have pretty much come to a huge decision. I hope you will try to understand my reasons for this decision and even if you don’t personally agree with it I hope you won’t judge me too harshly.

To read the full text, please go to:
http://www.timesonline.co.uk/tol/life_and_style/health/article7002306.ece]]><![CDATA[I had to take to my bed for weeks due to ME]]>
Evening Chronicle - http://www.chroniclelive.co.uk

Two North East teenagers have spoken out about their experiences of living with the debilitating illness ME. Marie McEvoy reports.

FOR years ME was dismissed as “yuppie flu”, with sufferers gaining little sympathy from the public.

But now a DVD has been launched in the region in which youngsters give personal accounts of suffering from the illness.

Teenagers Kate Richardson and Shaun Rogers feature among five others who highlight their experiences for the educational DVD detailing the plight of young people suffering from ME.

The condition affects the nervous and immune systems as well as causing digestive and concentration problems.

The DVD also features an interview with pop group McFly and BBC Look North weather presenter Trai Anfield, who shares her experiences of living with the illness.

It will be used in schools and colleges to emphasise the challenges that children and young people face on a day-to-day basis when living with the illness, including bullying, loss of friends and the difficulties of getting diagnosed.

Kate, 16, of Birtley, County Durham, was diagnosed with the condition two-and-a-half years ago after a minor ailment persisted.

“I’ve always been sick with things like tonsillitis,” she explained.

As she didn’t seem to be getting better after the latest case of tonsillitis, she we went to the GP, who referred her to a specialist, who ran tests.

Her grandmother had suffered from it, and much of Kate’s symptoms were the same, so she says she and mother were half expecting the news - and, in a way, relieved to finally find out what was wrong.

“I’m just grateful it wasn’t a lot worse,” she said.

“For the first year, I didn’t do anything. It was very lonely to start with.

“I was in bed for eight weeks at a time, and didn’t go to school, so there were only a few close friends I kept in contact with.

“People at school think ‘oh it’s great, you’ve got a year off school, you just sleep’, but it’s not like that at all.

“It sounds horrible, but it might have been easier if I’d had a more well-known illness, or if people knew more about ME – it affects you at different times, and when you’re at school you feel a bit better, so people don’t often see you at your worst.”

During the difficult times, even the smallest tasks seem enormous, and there doesn’t appear to be much that can be done.

Kate added: “I just have no energy at all. I get really bad headaches, and most tablets doctors give you are migraine tablets, but they can have other side-effects.

“The treatments aren’t very effective; no-one really knows what causes it.”

In search of advice, Kate got in touch with ME North East, which helped arrange part-time learning with home tuition in core subjects, and she said she couldn’t have got through it without it.

She wanted to be part of the DVD by way of thanks, and to help make people more aware of ME, also known by the names chronic fatigue syndrome and post-viral fatigue syndrome. “I knew how much ME North East helped me, and I knew how hard it was for me to go back to school and have people not understand.

“No-one really knows that much about it. It will definitely benefit people,” Kate explained.

Shaun, 14, from Denton Burn, Newcastle, has been living with ME for a year.

He became ill with H-Pylori, a bacterial condition that causes stomach ulcers, when he was 11.

He recovered from the first bout, but three months later he fell ill with the same condition, and it became increasingly harder for him to recover from it. In the end, it forced him to visit a doctor.

“It just wouldn’t go away,” said Shaun.

“The doctors kept sending me back to school but I couldn’t handle it. Because I couldn’t go back to school, I lost most of my friends, and I couldn’t go anywhere without falling over or passing out, so I had to stay in the house.”

Shaun started having lessons for an hour a day with a tutor, but sometimes his illness was so bad he couldn’t even manage that.

Missing so much school meant that relationships changed with friends, and tensions sometimes ran high at home.

“At its worst, I would just spend the whole day in bed. When I did go back to school, my friends thought I was on drugs – there was an awkward atmosphere.

“I think the only people who truly believed me were my mum and dad, but I think even my dad took some convincing. There were a few arguments about me not going to school.”

His grandmother looked into ME North East and read through stories of sufferers with similar symptoms.

Armed with this information, Shaun’s family confronted the doctors, who ran tests which eventually resulted in his diagnosis.

Shaun said he wanted to take part in the DVD as a way of providing an opportunity for those with sparse or no knowledge of the condition to gain a better understanding.

“Not many people appreciate how it makes you feel,” he said.

“I took part because people need to know that ME’s not something in your head, it’s a real illness.”

Shaun also offers advice to the other 2,000 young people in the region who suffer with the illness.

“Don’t push yourself. Don’t do things you know you can’t do. I’ve done that plenty of times and ended up in hospital,” he said.

Sufferers as young as seven need ongoing specialist support and advice.

ME North East’s young people’s group, financed by BBC Children in Need, offers just that, by providing support to families and carers by way of home visits, educational support, social events and fundraising activities, among many others. The main aim of the group over the past few years has been to try to make the often-misunderstood illness better known to as many people as possible.

It also gives training presentations to health professionals and teachers, among others, and the DVD is seen as being a key part of this educational process.

The DVD’s creator, Adam Chetter, from North East-based production company TalentStar, said: “I know this DVD will change people’s perceptions of ME/ chronic fatigue syndrome and it has been a pleasure working with both the young people involved and ME North East, which makes such a difference to the lives of so many.”

Sheila Carruthers, young people’s development worker, has high hopes for the DVD.

“Initial reaction to the DVD has been incredible”, she said. “This project has been a year in the making and has been a bit of a rollercoaster of emotions for me.

“Hearing some of our young people expressing themselves in the way they have has been so powerful and shows the ongoing plight that we still have in educating people about this disabling and misunderstood illness.

“These young people face challenges every day and the more we can increase awareness will hopefully improve their quality of life.”

For more information about ME North East, log on to www.menortheast.org or call (0191) 389 2222.]]><![CDATA[Stanmore basketball player to join Paralympic team]]>www.harrowtimes.co.uk

A MEMBER of a Stanmore basketball team is heading to Beijing next week to take part in the Paralympics.

For the last few months, A-Levels have not been the only challenge facing 18-year-old Helen Freeman, of Watford, who will be competing for a gold medal after months of training at the Aspire Centre, in Wood Lane.

    “My parents are very proud, as are my brother and sister".
    Helen Freeman

Helen has Myalgic Encephalopathy, or Chronic Fatigue Syndrome, a condition which causes extreme tiredness.

She will leave for Hong Kong next week, where the holding camp is based, and begins the week-long competition on September 7.

Helen, who will compete in the women’s British wheelchair basketball team, as part of a squad of 12, said: “I am a bit nervous but very excited.

“I have been playing basketball for six years, and love the sport.

“It is fast, exciting and although it is not actually a contact sport, I do enjoy the contact that you get and love playing as part of a team.”

It has been a busy time for Helen, who has just finished at Rickmansworth School, where she obtained grades AAB at A-Level and is due to read biochemistry at Reading University when she returns from Beijing.

She explained that she first became involved in the sport when she got fitted for a chair and the person who helped was a coach for a local team who invited her along to a practice session.

Helen said: “I had never played before, but I tried it and really enjoyed it.

“It was good fun and I have met some great people over the past six years.

“At Beijing, we are aiming to get in the top six, but will see what happens. It is daunting but it really has not hit me yet and I do not think it will until I get there.”

The teams were selected in May to go through to the Paralympics and have been training six days a week ever since.

Helen, who has a 15-year-old brother and a 21-year-old sister, said: “My parents are very proud, as are my brother and sister. We are a really sporty family.

“My friends are so excited, I think they are more excited than me, they cannot believe it.

“It is my first time going to Asia, and I cannot wait to see it.

“I would say to anyone who is disabled and wants to get involved in sport, to give it a go.

“You never know how far you will go and there are lots of clubs, but it is still important to concentrate on school, stay focused and always be committed.”]]><![CDATA[Trapped in bed for 14 years with chronic fatigue]]>http://www.dailymail.co.uk

By Gill Swain

She can't swallow. She can't speak. She's in constant pain. Yet some doctors say Lynn's illness is all in the mind. Read her story and you'll never be flippant about 'yuppie flu' again:

For years many doctors dismissed ME, also known as Chronic Fatigue Syndrome, as 'yuppie flu'. But last month a coroner gave ME as the official cause of death for the first time in the UK - raising hope among campaigners that the condition is about to be taken seriously at last.

Here, Kay Gilderdale tells GILL SWAIN the heartrending story of her daughter, Lynn, 28, who was struck down by the illness 14 years ago...

The soft cotton curtains are permanently drawn to cut out the summer glare. On the bed in the gloom lies a beautiful young woman with skin so pale it is almost translucent. She is stretched out flat on a sheepskin to prevent bedsores, her head resting on a towel. There is a tube down her nose delivering liquid food, and an intravenous line pumping drugs straight into her chest.

Her name is Lynn Gilderdale, she is 28 years old and this has been her life for 14 years. Apart from stays in hospital when she develops an infection, Lynn never leaves her bed in the small bedroom at the back of her mother's bungalow in the village of Stonegate, East Sussex.

Her legs are paralysed and without feeling, she cannot sit up without passing out and her neck is too weak to support her head. She has lost more than half the bone density in her spine and went through the menopause at the age of 20. She is in constant pain. She cannot swallow. She cannot speak. Her mother Kay, who cares for her, has not heard her daughter's voice since she fell silent in August 1992.

Lynn is suffering from ME ? Myalgic Encephalomyelitis ? once sneeringly dubbed 'yuppie flu' and suspected of being a psychological affliction that struck mostly people who couldn't cope with the stresses of modern life. Anyone who ever thought that way would find a visit to Lynn a deeply shocking and humbling experience. 'It's like she's in limbo,' says Kay, 52. 'If someone dies, you mourn them, then you get to a stage where you know that person is gone and you move on. But Lynn is neither one nor the other.

'She is stuck in that room, not dead, but not alive properly. If I didn't believe, and she didn't believe, that one day she would get better then I don't think it would be right for her to go on suffering like this for a whole lifespan of 70 or 80 years.'

It is estimated that a quarter of the 240,000 ME victims in the UK suffer severe symptoms such as paralysis and the inability to speak or swallow for months or years, and there are probably several hundred as terribly ill as Lynn. Dr Anne MacIntyre, who wrote one of the first self-help books for ME sufferers and has known Lynn since 1993, says: 'At one time Lynn was so sick she recognised nobody, not even her parents. It is absolutely dreadful. These cases are mostly of people who fell ill in their teens, but they are hidden because no one ever sees them.

'They are too ill to get to a clinic and they are cared for at home by parents or other family. Their GPs have mostly given up on them because no one really knows what is going on with this illness.' Though only able to turn her head weakly from side to side and move her arms,

Lynn's strength of character is unmistakeable. She expresses herself through a sign language that she has developed with Kay, and smiles and makes jokes whenever she can. Kay invites people into her daughter's small room, which is cluttered with soft toys, to meet her and take photographs to convince the world this is a real illness and to encourage more research to find a cure.

To describe the pain she is in, Lynn makes stabbing gestures and points to the left side of her chest, sweeps her hand across her forehead to indicate her persistent headache and twists her hands around each other to represent the churning agony in her stomach.

Asked if she is fed up with being like this, she looks both angry and exasperated and holds her thumb and forefinger emphatically an inch apart, meaning: 'Just a bit!' She is very sad, she indicates, but never depressed. I am not brave, I have no choice but to be hopeful, otherwise I would just give up,' her mother translates.

The family's ordeal has been made worse by the fact that, because there is no diagnostic test which can detect the cause of ME's symptoms, many people - including doctors and nurses - persist in believing it is self-induced. But Lynn was a lively, intelligent, popular teenager who enjoyed a happy life with her family. 'We didn't realise how happy until we lost it,' says Kay.

With her mother, older brother Steve and father Richard, a former police inspector who now works for the force as a civilian, Lynn would go sailing and on family cycle rides.

She played the piano and clarinet, won prizes for ballet, and loved swimming and going to the youth club with her friends. Then in November 1991, when she was 14, she had a TB vaccination and immediately felt unwell. Lynn struggled in to school the next day but was sent home and never returned.

Lynn developed flu, bronchitis, tonsillitis and glandular fever, one after the other. 'By February she was really very ill and we were beginning to realise it wasn't just normal bugs,' says Kay.

'Her legs would give way, her memory was getting very poor, she was having awful pains all over her body and a constant, dreadful sore throat and she would often faint.'

Because of her weak legs, she had to start using a wheelchair, then the top half of her body became floppy. By May 1992, ME had been diagnosed and Lynn was bedridden, had difficulty swallowing, couldn't recognise people and her voice had reduced to a whisper.

Frequently, she would fall unconscious while every muscle twisted in violent spasms. 'That first year was so terrible, when we knew she was extremely ill but the tests didn't show anything,' says Kay. 'The first paediatrician we saw said: "It's OK, you've got a fashionable illness. It will go away in time."

'With every other disease you get kindness and sympathy, but though Lynn was very frightened and we were desperate for help, all we got was accusations that she was pretending. It was hugely upsetting.'

Cruel, if well-meaning, experiments were conducted on her in hospital to 'force' her to admit she was making it up. Nurses left her unattended for hours in the theory that she would get up to use the bathroom. This had humiliating results.

'Making it up'

Doctors once administered a 'truth drug' and questioned her over whether she was being abused at home. There was a suggestion Lynn had school phobia and Kay once overheard a nurse speculating that it was Munchausen's Syndrome by Proxy - when a mother induces symptoms in a child to draw attention to herself.

'One consultant was convinced Lynn was orchestrating her spasms at certain times of day so they took away her clock, the radio and TV and the nurses lied to her about the time. She still had the attacks at the same times.

'They abused her verbally, calling her a "silly little girl", saying "Of course you can do it" and telling her to fetch things herself. Sometimes she was in such pain and felt so terribly ill she would ask us: "What is going to happen to me?" But we had no answers for her, and neither did the doctors.'

Medical opinion now mostly concurs that ME is caused by a virus, but there is still no treatment for it besides controlling the symptoms.

At first, however, Kay was advised to make Lynn stick to a timetable of study, rest, socialising and exercise. So she would make Lynn walk down the road even when she felt weak - then had to half-carry her back when her legs gave way.

Kay had trained as an auxiliary nurse and it made sense to her at the time to keep Lynn moving. Now she bitterly regrets it, as she is convinced it caused Lynn more harm.

Softly-spoken and mild-mannered, Irish-born Kay is determined to stay positive, but she had to struggle to come to terms what she saw as her own role in Lynn's suffering. 'I don't beat myself up about it any more because that would be a waste of energy and I need every atom to cope,' she says.

Nine months after she fell ill, Lynn could move no part of her body except her little finger, could not speak and had to be fed through a tube. But Kay and Richard made the courageous decision to take her home.

'They said if we did, there was a risk she would die, but we felt there was a greater risk if she stayed in hospital and didn't get the peace and care she needed.

'For two or three years afterwards she would wake up screaming from nightmares of things that happened to her in hospital. She is still scared of doctors and nurses and I won't have anything to do with anyone who doesn't believe in ME.'

Kay left her job in accounting to look after Lynn and has never left her side for more than two days. Her marriage broke up - she says not because of Lynn's illness but unrelated problems. However, Richard still helps care for his daughter.

Lynn's brother Steve did well at school despite his family life disintegrating and now works in IT and is due to become a father in August.

Kay was only 37 when Lynn fell ill. But for her, too, normal life came to an end then. She has a carer in twice a week so she can go shopping and see people.

'I don't resent what it has done to my life but I do resent whatever has made her so ill. It's been heartbreaking to watch my child lose her faculties one by one.

'It is still very hard for me to see mothers and daughters together or groups of teenagers dressed up and laughing or to hear a family in the garden having a barbecue with children running around.

'If I lived somewhere like a high-rise flat, I don't think I could have coped. And at least I can walk in my garden.'

Every birthday and Christmas has been sad as the years have passed with no improvement, though Kay tries to make them special. 'For her 18th, I wrapped 18 little presents and put them in a biscuit tin which I iced and put candles on. Lynn said it was a lovely cake but she couldn't eat it, then I showed her what it really was.'

In her late teens, Lynn's body stopped producing oestrogen and she was diagnosed with premature ovarian failure. She has been on HRT ever since, but the lack of hormones contributed to her severe osteoporosis. She is on 24-hour pain control, plus drugs to prevent sickness and spasms.

Light and noise

Lynn is hyper-sensitive to light and noise and for years could not bear to watch television or listen to music. Now she has forgotten how to read. She has a hamster with which she plays in the afternoons and she watches the darting movements of the tropical fish in a large tank beside her bed.

She loves make-up and jewellery and choosing presents from mail-order catalogues. At her strongest she can make cards for friends. But she suffered a knock back in October. Her lung was punctured while she was having her Hickman line - a semi-permanent catheter through which she receives medication - replaced and she is now sleeping nearly 15 hours a day.

Asked what she would like to do if she recovered, Lynn signals that she just wants to do normal things. And she folds her arms together in a rocking motion to indicate her yearning for a baby.

'She has always loved children and I've told her there are many ways to have a baby even if you can't give birth yourself,' says Kay. 'But I am really hoping that once the virus which caused her ME has finally burned itself out, everything else will start working again.

'People do get better, even those as ill as Lynn. Every time I read of such a case I am pleased for them, but I can't help wondering when it will be her turn.

'If she could come out of that room, it wouldn't matter where we went. It would be enough just to feel the air on our faces, see the sky, be part of the world. Lynn tells me she feels it is all out there, waiting for her to step back into.

'It is not that she doesn't want to. She wants to so much. Who would choose to lie in bed and be injected with drugs so many times your veins collapse over the life she had as an active teenager?

'We need to find the cause'

'Yet the Government is putting money into treatments such as graded exercise and cognitive behaviour therapy - which don't help those most severely affected by ME - rather than into research to find the cause.

'Until a cure is found, the thing which would make the biggest difference to our lives would be for everyone to realise it is a real and terrible illness.

'But a lot of people still say to me they thought ME was "just tiredness". And people like Lynn are still being told: "Pull yourself together." '

For information and advice for anyone severely affected by ME contact The 25 Per Cent Group on 01292 318611, www.25megroup.org, or Action for ME on 0845 123 2314, www.afme.org.uk]]><![CDATA[ME still a mystery]]>www.echo-news.co.uk

By James Kershaw

IMAGINE suffering from a condition where there is no diagnostic test, let alone a cure.

An illness that can leave you with flu-like symptoms, extreme tiredness, muscle pain, concentration problems and digestive disturbances.

About 250,000 people suffer from ME, myalgic encephalomyelitis, a mystery illness, which has no known cause.

The condition, also known as chronic fatigue syndrome, affects men and women of any age, but is more likely to develop in people between their early twenties and mid-forties.

Treatment is limited to cognitive behavioural therapy, a psychological technique aimed at dealing with the condition, monitoring daily activity through graded exercise therapy, and pacing.

Yet despite the number of patients living with such severe symptoms, the illness is widely mis-understood and is viewed with suspicion by some healthcare professionals, who believe it is psychological, rather than physical.

This week, a number of ME charities are taking part in ME Awareness Week, a campaign to promote awareness and raise funds for research into the condition.

Action for ME is launching the Big Deal 4 ME Appeal, which is asking people to sponsor sufferers for completing something that is an achievement for them.

This could be finishing reading a book, getting dressed without help for a week or doing any other task that people with ME struggle to accomplish.

“It’s a great opportunity to raise awareness of this chronic, fluctuating condition which affects 250,000 people in the UK,” says Sir Peter Spencer, chief executive of Action for ME.

“As this illness is still so widely misunderstood, it’s vital to increase knowledge and understanding.”

Two other ME charities are launching an internet-based campaign to coincide with the awareness week, aimed at funding biomedical research.

The Just Four Quid campaign, set up by the ME Association and ME Research UK, is based around the idea that if £4 was donated for each of the country’s 250,000 ME sufferers, the charities could raise £1million. Tony Britton, publicity manager at the ME Association, says: “Heaps of money has been put into psycho-social research into ME, but we believe the answer to finding a cure and diagnostic test lies in physical research.

Biomedical research examines areas such as muscle tissue, which thought to behave differently in sufferers, blood flow and brain structure.

“ME is a mystery illness,” says Mr Britton.

“You can have a whole range of symptoms and still not be believed, even if you take those symptoms to a doctor.”

For more information about the campaigns, visit Action for ME at www.afme.org.uk, or www.justfourquid.com]]><![CDATA[Re: When illness is mostly in the mind]]>
So Simon Wessley receives hate mail? (When illness is mostly in the mind, New Scientist, 11 March 2009) Could this be due to the untold damage he has wrought both to patients and to the development of a rigorous scientific and bio-medical understanding of this complex illness?

There are many flaws with his science – among them are his criteria for selection of patients (invented by himself) which are so broad they include many different illnesses which happen to have ‘fatigue’ as a component. In fact ME is a well defined neurological condition (as recognised by the World Health Organisation).

Wessley’s results have not been replicated when stricter diagnostic criteria have been used. In addition, a recent patient survey from Action for ME reports that 1/3 of

patients were made /more/ ill by the graded exercise therapy that Wessley recommends. Is it any wonder patient groups protest?

While much more research and research funding into this illness is needed, there are many promising scientific findings, from gene expression (as reported in New Scientist 21 July 2005), to abnormal mitochondrial function. Maybe New Scientist would consider redressing the balance, by covering these in a future issue?


ME sufferer of 9 years and until recently RCUK
Academic Fellow, University of Strathclyde]]><![CDATA[Controversy over new ME guidelines]]> www.theargus.co.uk

Far from being universally accepted, the recently published National Institute for Health and Clinical Excellence (Nice) guidelines for ME, as written about in your recent article (August 30), have been declared by the great majority of ME support groups as being "unfit for purpose".

The groups have not given their support for them at all and the ME Association is one such group among many. The only groups that have supported their release are Action for ME (AfME) and its close ally Association of Young People with ME (AYME). The Sussex and Kent ME Society is closely linked to these groups so it is no surprise to see them offering their support too.

However, it should be noted that these groups represent only a tiny proportion of ME patients and they do not speak for the great majority in Sussex, Kent or indeed the whole country.

In fact the great majority of people with ME do not support the work of these groups and have great reservations about their actions.

Most people with ME in Sussex are also not happy with the services on offer to them at the Haywards Heath clinic for chronic fatigue syndrome and ME. They seem to offer only psychologically based interventions that have been shown to often cause people to become worse, not better.

This is because the assumption made at clinics such as these is that ME is a psychological condition perpetuated by psychological factors. It is not.

It is time funds were instead given to real physically based research studies because if they are not then the real cause of ME is never going to be known.

There is much that is already known, but has and is being ignored by organisations such as Nice. It is high time this scandal ended.

People wanting to know the facts about ME should join one of the support groups that are really fighting for their cause. There are many out there and there is plenty of information on the internet.

AfME and the Sussex group do not represent me and the great majority of people with ME in this country.

Keith Riley,
Steyning Close,
Seaford ]]><![CDATA[Re: I believe there is a cure for ME - I've tested it]]>http://www.dailymail.co.uk

by Aylwin Catchpole

I am sorry to say that if the Lighting Process worked for Ms. Gibson (I believe there is a cure for ME - I've tested it, Letter in Daily Mail, 20 November 2008), then she never had ME in the first place. Her understanding is not congruent with the 60 years of true biomedical research into the WHO-defined Neurological Disease, ME.

CFS is the unscientific moniker ascribed to a heterogeneous and unknown group of illness processes and, by definition, excludes the very specific and crucial aspects of the infectiousness of ME, as well as the specific neurological/brain injury from which virtually all symptoms of ME find their origins.

Furthermore, repeated research has shown that no one personality type or socioeconomic status can predict ME at all, and in fact there is a NEGATIVE correlation between psychiatric disease and ME, unlike the bogus category of "CFS". So much for the "Yuppie Flu vs. Couch Potato" theory. Yes, Adrenaline metabolism is involved but is rooted in the brain injury and is only one, relatively minor, aspect of this disease.

How could a three day "process" cure anyone of the catastrophic effects of ME on the immune system, the cardiovascular system, the endocrine system, the brain injury with often multiple lesions and metabolically affected areas of the brain, the mitochondrial dysfunction, and the multiple, hidden co-infections that are only some of the aspects of the real disease ME? It not only beggars the imagination but is patently ridiculous.

And there is just no way that anyone with moderate-to-severe ME could ever manage or tolerate three full days of anything without severe consequences.

I am getting very "tired" of these ads-disguised-as-articles for the silly Lightning Process! It not only is a Pyramid-style money scam, but has many of the hallmarks of a cult.

Sincerely
Aylwin Catchpole
British Columbia
Canada]]><![CDATA[Re: Are we any nearer to finding a cure for ME?]]>http://express.co.uk

by Veronica Jones

ME (Myalgic Encephalomyelitis) sufferers need to pace themselves carefully to avoid relapse.  Even for those who know this already, their lives can be made a misery by relatives and friends reading advice in the media about graded exercise and concluding that if only the ME sufferer exercised more they would improve, so it is their fault they are so ill.

I am deeply concerned that Dr Rosemary Leonard advises that 'graded exercise is often beneficial' (Are we any nearer to finding a cure for ME?, Daily Express, 23 September 2008), without a corresponding warning that it has also been found to be positively harmful to a number of patients, as over 30% of respondents in the recent survey for Action for ME testify, corroborating an earlier survey by the 25% ME Group.

No drug having these results would be recommended without a warning and yet patients have ended up severely affected and bedbound after attempting graded exercise.

The government has sadly poured millions into psychiatric research and treatment without funding any biomedical research to find the causes, a diagnostic test and a cure.   ME has been lumped together with other 'medically unexplained' fatigue illnesses (ie for which there is no simple diagnostic test) under the umbrella term Chronic Fatigue Syndrome and this is why what works for some can be harmful to others.

Depression is no more a 'feature' of ME than of any other chronic illness. I am appalled that she recommends that sufferers from ME, a neurological illness, consult the Royal College of Psychiatrists rather than for example, the ME association, www.meassociation.org.uk

Veronica Jones
Gloucestershire]]><![CDATA[Wide Eyed and Restless]]>
Interaction magazine - Issue 60 (May 2007)

Action for M.E -  www.afme.org.uk

Virtually every person with M.E I have spoken to tells me that they have experienced some degree of sleep disorder during their illness, says Elaine Myers.

Whatever the cause or type of sleep disorder, the result is always the same:  all other symptoms are exacerbated.

The constant need for rest becomes an overriding issue and yet often the sleep we do achieve is not restful enough to heal our bodies.

Professor Tony Pinching, Action for ME’s Principal Medical Advisor, comments:

“Essentially there are four main types of sleep problem in people with CFS/M.E: 1.    Waking during the night with unrefreshing sleep quality, often with restlessness and strange dreams; 2.    Problems getting off to sleep; 3.    Other problems that interfere with sleep (e.g. anxiety); 4.    Excessive sleepiness (less common after the initial phase).

The first of these is critical, because the quality and structure of sleep, with its normal balance of phases at different depths, is vital to gain the proper benefit of sleep on physical and brain energy. Normal sleep pattern is also very important in laying down memory and processing information from the day. Sleep deprivation will bring out your weaknesses too!”

Janice has been diagnosed with ME. for over two years but has had symptoms for longer, “My sleep patterns at present are difficult in that I struggle to sleep at night and sleep heavily to nearly lunchtime,” she told us. “When I awake I feel very sleepy for at least an hour I find going to bed at 10pm important and I try to remain awake all day.” Not everyone can manage this.

Gill’s main problem is the reversal of night and day. “I feel drowsy during the day, and can only really start doing things after midnight (hence writing this after 1 in the morning!). It affects my life a lot, because I am up when other people are asleep.”

Unrefreshing sleep
Michele has unrefreshing sleep, disturbed by vivid dreams. “Although I am not working during the day, I am in my sleep!” she said. “Often lam returning to my job but cannot find my notes to teach a class, am very tired most of the day and if I sit down I invariably fall asleep. Sometimes I fall involuntarily into a weird uncontrollable half-sleep that I hate.”

Another member says: “My brain just won’t switch off. I can’t stop worrying. I also have physical discomfort including muscle tension, hot flushes, itching and pain.”

Mike finds that his sleep problems seem to come in cycles: “I can go for months sleeping reasonably and then I am back to waking up at around 3am and am unable to get back to sleep however hard I try.”

Andrew says, “The classic M.E. sleep conundrum followed the following profile in my case: (a) after ME. starts, it is a case of anxiety for no known reason, excessive sleep, a constant feeling of sleepiness during the day, and no benefit from the excessive sleep; (b) about a year later, insomnia strikes, where no matter how tired you are, sleep is not an option presented.”

Emma spotted different patterns in what she calls “the chronic stages” of her illness compared to relapses. “During the chronic stage, I’d be exhausted all day and then find myself wide awake at night-time. During relapses, the pattern tends to be very different as I may find myself asleep for 16-20 hours in each 24 hour period.”

Possible solutions
The website of the American government’s CFS program ( vww.cdc.gov/cfs ) says that:

“Health professionals can help people with CFS adopt good sleep habits. Patients should be advised to practice standard sleep hygiene techniques: establish a regular bedtime routine; avoid napping during the day, incorporate an extended wind-down period; use the bed only for sleep and sex; schedule regular sleep and wake times; control noise, light and temperature; and avoid caffeine, alcohol and tobacco.

Light exercise and stretching earlier in the day, at least four hours before bedtime, may also improve sleep.”

Professor Pinching adds: “This general advice needs to be thought through individually with reference to the severity of your illness, the type of sleep disturbance, and your personal style and preferences. But a careful review of old habits can be useful.

For example, some people have interesting ideas about what constitutes winding down before sleep: watching some films on TV may wind you up!

One patient said she had cut out coffee to avoid caffeine, but was still taking several cups of tea (also containing caffeine), as well as using Red Bull to get through the evening when her husband came home!

“Some therapists are very strong about avoiding daytime sleep, because it can disrupt the quality of night time sleep. This is often good advice, and a rest in the day is often even better, but for some patients a sleep in the middle of the day can be an essential first step. I advise avoiding daytime sleep if it is indeed disrupting night time sleep; but feel able to use it to recharge the batteries if it doesn’t. After all, in the Mediterranean, a siesta is normal! “

Effective pacing routines can help restore better sleep patterns. Patients who are pushing themselves too hard may find that they are too tired to get to sleep or to maintain it.

“If sleep hygiene (dreadful term!) isn’t enough to restore better quality sleep, then medication may be worth considering.

There are three types of approach. Very low doses of tricyclics (the old-fashioned ‘anti-depressants’ but used at a very different dose) are the most effective for restoring more normal sleep rhythms. Some of them tricyclic can be adapted to how much or little help you need with getting to sleep, as well as minimising any morning drowsiness you get as a side effect. Some can suppress nerve pain too, as well as reducing some anxiety.

These treatments can be used for long periods without causing dependency. Mirtazapine (Zispin) and trazodone have a similar effect on sleep quality as the tricyclics.

“Sedatives (including prescribed ones and many over-the-counter and herbal sleep remedies) can only really be used intermittently, because they show decreasing effectiveness with time; most can produce dependency.

The less activating antidepressants such as citalopram and sertraline can have a more indirect effect on sleep quality, as well as helping to treat depression and anxiety if these are present, but Prozac, Seroxat and venlafaxine are likely to increase sleep disturbance.”

Sleep habits
Adopting particular sleep habits has been a help for Frankie: “If I’m awake for more than 15 minutes during the night, I get up and move to a bed in another room. I have an electric kettle and a microwave upstairs, so I can make myself a hot drink and heat up a wheat bag to put against the small of my back, which eases some of my pain. Then, comfortably propped up on lots of pillows, I read, listen to music, write a letter or think more about the book I’m writing. I stay there until I feel drowsy again.

“Occasionally I give myself a holiday from insomnia by taking Phenergan. I can buy 50mg tablets at my chemist without a prescription.”  Phenergan is an antihistamine which is also used as a sedative.

Writing in InterAction in 2002 (issue 41, p 31), Professor Pinching described some of the pros and cons of using sedatives and antidepressants:

 “Sedatives may help in the short term to establish a better sleep pattern… but in the long run, sedatives may cause more problems, specially because one may become dependent on them (i.e. addicted).

All of them can cause this to some extent, though some (like diazepam, temazepam and nitrazepam) are more likely to do this than others. On the other hand, for people who cannot tolerate or do not benefit from other approaches, they can still be useful, used sparingly and with care. Sedatives to consider in such situations include: Nytol, Phenergan (available over the counter) and Welldorm, zopiclone and zolpidem (by prescription only). Some herbal preparations can help too.”

One reader, who preferred to remain anonymous, admits that s/he may well have become addicted. “I have had an inability to go from waking to sleeping at night-time - probably for 10 years now (I have had M.E. for nearly 20 years).

I take zopiclone and it solves the problem, giving some essential sleep of quality that enables me to tackle the next day ahead. I have taken this for years now and may be dependent on it m sure my OP doesn’t want me to continue taking this.”

In January 1998 the BMJ published Physical dependence on zopiclone: case reports (Jones and Sullivan), which described withdrawal symptoms including craving, anxiety and insomnia in patients who had prolonged/ increased their intake of zopiclone above the dose initially prescribed.

Medication alert
Readers are advised not to take any medication without checking with their doctor as self-medication, even using herbal remedies, can have adverse effects.

Sarah tells us: “When I first ill six years ago, sleep disturbance was my most distressing symptom. I had little trouble falling asleep, but only slept very lightly and would wake up very early every morning (3 or 4am), with my heart pounding, unable to sleep again.

“It was suggested to me that I should try herbal remedies to help combat this, including valerina. Although I took less than the suggested dose I felt as if I was being poisoned.

Fortunately, I realized it was the herbal remedies causing this and stopped taking them. I was still only sleeping three or four hours a night though, so I went back to my GP. “I was prescribed Zispin, which is ostensibly an anti-depressant but also works as a sedative and helps reduce anxiety. I am happy to say that these have really worked and I am sleeping relatively normal again.”

Trying tricyclics
A number of other members have had some success with low doses of tricyclic antidepressants, alone or in conjunction with relaxation techniques. Catherine tells us:

“Amitriptyline really helps me. I get a deeper sleep so I am less likely to wake up at night or remain awake if I do get woken. I don’t take it every night, just when I get a phase of insomnia, maybe for a couple of nights. You have to make sure your GP understands that M.E. sufferers can only take very low doses. I couldn’t tolerate more than 25mg.”

Debbie has been using Amitriptyline for four years at a lower dose and feels “It’s really helped me regain normal sleep patterns (and saved my sanity!) after seven years of bad sleep problems with M.E.

“Like many others I had an out-of- whack body clock,” she explains, “I tried everything including getting up at a set time but that usually made me too exhausted to sleep the next night, making the problem worse.” She tried antihistamines but they made her groggy the next day and less likely to sleep the following night. “Then a few years ago I came across an article about Amitriptyline being used to help sleep problems in people with ME. I cut my dose down to 5mg and took this at about 7pm. I fell asleep with no problem at about 1030pm and slept about g hours (a miracle!). This seemed the right dose to fail asleep but not wake up feeling dopey.”

Many people combine medication with other techniques. Cathy says her sleep problems have been helped by taking antidepressants at night ‘and by listening to the World Service radio, and BBC audio tapes, CDs such as Lord of the Rings. The more familiar the story, the more powerful the somnolent effect!”

Andrew feels he has tried everything and still hasn’t found a remedy which works for him, as has Christine, with mixed results. “On really bad nights I take Zimovane. On nights when I can’t decide whether it’s going to be really bad or just bad I take either Valerian, Nytol or Piriton. Tried melatonin but it made the nightmares even worse. Also lavender oil which is nice but no help. I am now trying the herb mistletoe (yes, you did read this correctly) and it is definitely helping with the anxiety.”

Melatonin
Melatonin is a natural sleep hormone vital for a goodnight’s sleep. The jury is still out on the use of melatonin for sleep disorders. It is not available in the UK without prescription, or even on prescription in adults.

Although Dr Kelly Morris admitted in the July 2002 issue of InterAction that she had bought it in the USA while there and used it “in pure form” to counter jet lag, she added: “but it’s effects on the sleep- wake cycle can be unhelpful if taken at the wrong time.”

n 2002, Williams at al aimed to determine whether M.E./CFS symptoms were alleviated by 5gm melatonin and bright-light phototherapy in 30 adults who had experienced unexplained fatigue for more than six months. They concluded that melatonin and bright- light phototherapy appeared ineffective but an evidence-based guideline on the management of M.E. in children and young people, published two years later by the Royal College of Paediatrics and Child Health, said:

“Although there is no research or safety evidence there is anecdotal evidence of the use of melatonin in this area and published evidence for its effectiveness in treating sleep disorders in children and young people with other conditions.”

When Dr Andy Wright looked at melatonin levels in 60 M.E./CFS patients several years ago, he found that they were invariably abnormal. “Using salivary melatonin levels as a test, I found 75% of patients stopped making any melatonin, 20% had phase-shifted melatonin, i.e. the time it was made varied.

The usual rise starts at 8pm and peaks at 2am. Mainly it did not rise until 2pm in the afternoon in these cases, with none at night. In 5% there was normal output. “Melatonin though is only the first part of sleep in humans. It initiates sleep in humans but does not put us into deep sleep.

This is mediated by a complex pathway called the ‘Histaminenterleukin-Prostaglandin Pathway’ (HIP). Various other chemicals in the HIP put us into the different phases of sleep including deep sleep. Then a rise in cortisol produced by the adrenal gland, via hormonal messages from the hypothalamus and pituitary, wakes us up. If this adrenal pathway is abnormal then it causes sleep disruption.”

Dr Sarah Myhill agrees: “We know that patients with fatigue syndromes have a disturbance in their hypothalamic pituitary adrenal axis with knock-on effects to the pineal gland which is responsible for maintaining the biological clock.”

Almost as important as darkness at night is light exposure during the day. Light switches off melatonin production when you are supposed to be awake. Lack of light in the day is also associated with depression and depression will disrupt sleep.

Readers’ tips
When Anne feels exhausted but unable to sleep, ‘My remedy is to get up, make a cup of camomile tea, perhaps take valerian and read a book for 20 mins. This usually does the trick.”

Another reader recommends: “Not having a heavy meal close to bedtime helps although I do have two bites of some non-sugary carbohydrate before retiring — a tiny bit of bread or a cracker biscuit. It’s important to let your brain calm down before sleep time, so cut back on entertainment from the TV, reading, using the computer etc.

I enjoy listening to music on my walkman whilst going to sleep — nothing too stirring. There’s no point in going to bed before I am ready as I toss and turn. I need to keep warm as many M.E people do but I feel better with fresh air coming through the bedroom window even in winter.”

Blackout curtains or blinds help some people.

Rosemary feels that an acupuncture stud on her ear helped restore her sleep pattern. Another acupuncture technique is to apply a special wrist band — see www.sea-band.com .

Susan uses DIY acupressure: “Massaging the back of my neck in the hollow at the base of the skull helps with falling asleep.”

Ray says: “Since I changed all my bedding to cotton, and to the duvet with feathers, and removed all electrical appliances near the bed and moved the bed from any nearby wires, I now get a good night’s sleep and less problems with night sweats. (Also by changing my clothes to all cotton).”

Araya, who is noise sensitive, has the following top tips: “(1) Do not use the computer after lunchtime; (2) do not allow spouse to run video recorder at night (I am noise sensitive); (3) do not believe claims by spouse or Tranquil (the most silent computer that you can buy) that a Tranquil computer hooked up to gadgetry to allow middle-of-the- night recording will be silent. It won’t be.”

And finally
The predominant symptom of primary sleep insomnia is difficulty initiating or maintaining sleep or non-restorative sleep for at least one month without other medical causes.

There have been cases of sleep deprivation being misdiagnosed as M.E. because many symptoms of M.E. and sleep deprivation overlap. If you believe you have primary sleep insomnia, it may be worth considering a referral to a sleep clinic.

Contacts and resources
Useful websites British Sleep Society www.british-sleep-society.org.uk
British Snoring and Sleep Apnoea Association 01737 245638 www.britishsnoring.co.uk

Articles and books
Contact Action for M.E. for information including the Controlling symptoms factsheet and copies of previous InterAction articles:
Dear Doctor (issue 41) and Tired but wired (issue 25) Coping with sleep problems and Coping with children’s sleep problems
The Royal College of Psychiatrists, Talking Life, JA Grosvenor Road, Hoylake, Wirral CH47 3B5. Tel: 0151-632-0662 www.talkinglife.co.uk
Understanding sleep disorders in adults by G. Stores. Family Doctor Publications/British Medical Association 2003
Solve your child’s sleep problems by R. Ferber, Dorling Kindersley, 1986
Dr Myhill’s website at www.drmyhill.co.uk   includes her article “You Must Sleep” (June 2006)
Acupressure - how to cure common ailments the natural way by Michael Reed Gach (Piatkus Books)
ISBN 0-7499-2534-5
Management of insomnia . Kupfer DJ, Reynolds CF N Engl J Med 1997, 336: 341-346

About the author
Elaine Myers has suffered from M.E./CFS for several years and describes herself as a professional insomniac. She has written several health related articles and one cookery book and is currently working on her second novel. With thanks to Professor Pinching for his contributions to this article.]]><![CDATA['Yuppie flu' is finally being taken seriously]]>www.theargus.co.uk

More than 5,000 people in Sussex are believed to suffer from the debilitating condition ME. As a society set up to help them celebrates its 20th anniversary this year, reporter Siobhan Ryan finds out what progress has been made.

Myalgic encephalomyelitis (ME), or chronic fatigue syndrome, was originally dismissed by the medical world as yuppie flu, with sufferers told it was all in the mind. However, many influential bodies, such as the World Health Organisation, now think it is a real illness despite there being no accepted cure or universally effective treatment.

The condition is being taken more seriously, with the National Institute for Health and Clinical Excellence (Nice) issuing new guidelines earlier this month that health professionals should acknowledge the reality and impact of the illness and its symptoms.

In June 2006 Brighton and Hove coroner Veronica Hamilton-Deeley recorded chronic fatigue syndrome (CFS) as the official cause of death for the first time in the UK. Sophia Mirza's death was said to be caused by "acute renal failures as a result of chronic fatigue syndrome". Art graduate Sophia, 32, from Brighton, suffered with CFS for six years before she died in November 2005.

The condition can affect anyone at any age, with some cases linked to a viral infection while others are triggered by an operation or an accident.

Symptoms include severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and inability to concentrate.

The effects of the syndrome vary but it can change people's lives drastically - schooling or employment can become impossible and some people may be housebound or confined to bed for months or years.

Recovery is also unpredictable. Some people do recover completely, although it can take a number of months or years.

Colin Barton knew he had serious health problems when he had to be helped across the road by an 80-year-old woman. He was in his mid 20s at the time and realised the crippling fatigue and aches and pains he was suffering had put his life on hold.

The problems began for Mr Barton in 1981 when he developed a viral infection which he could not shake off. As the months and years progressed his condition deteriorated and he found himself becoming more and more debilitated, eventually spending most of his time in bed, unable to summon the strength to get out.

It was only when he spotted a TV programme featuring yachtswoman Clare Francis talking about her experiences with ME that Mr Barton realised what his problem was. He said: "My friends around me recognised the symptoms she was talking about and said that was definitely me. I was eventually diagnosed with ME in 1987."

It was at this point Mr Barton realised there was very little information about ME and not a lot of support so he decided to set up the Sussex ME/Chronic Fatigue Society that same year to try to help others and learn more. The group now has more than 1,000 members and, as well as helping develop local services, has had an input in national policy.

Mr Barton was on the Chief Medical Officer's working party, was involved in consultation with the Medical Research Panel and was recently a reviewer of the new Nice guidelines. One of the group's proudest achievements was its involvement in setting up a Sussex-wide specialist treatment centre for ME sufferers in Haywards Heath. It has only been going for two years but has already dealt with more than 1,000 referrals from GPs.

The service has provided better access and support for patients who previously had to travel to London to get the treatment they needed. Mr Barton, from Brighton, said: "The centre has made such a difference to a lot of people. We worked closely with the Primary Care Trusts for four years before the centre opened and we are so pleased it is now here".

"It is a sign the NHS and the Government are taking the condition seriously and are doing what they can. Great progress has been made in the past 20 years and we are determined to make sure progress continues. It gives us a great sense of achievement to see what difference has been made over the years."

The society runs regular local support groups around the county, works with yoga experts and has close links with the NHS Expert Patient programme, where people are taught how to manage chronic conditions and get the most out of life.

Support groups are also being set up for parents of young people with ME and for young carers of older people with the condition. The society has organised hundreds of meetings and conferences, one being the second largest gathering of ME/CFS patients to be held in the UK, which was chaired by Clare Francis at Hove Town Hall in 1992.

The charity was also shortlisted for an Argus Achievement Award in 2005 and was commended in BBC South's Community Champions awards in the same year.

Mr Barton said: "The aim is to try to make sure as many people as possible get the best help possible they can. Things are improving and the illness is being taken seriously but there is still a long way to go."

Kate Logan, 54, from Mile Oak, was diagnosed with ME in 1993 after falling victim to a series of illnesses including chickenpox and glandular fever. She gradually changed from someone who had a full-time job as a nurse, worked as a part-time DJ, went to the gym regularly and exercised her two dogs daily, to someone who was bed-bound and unable to leave the house.

She said: "It started off with muscle and joint pain and led to extreme fatigue. I used to be very fit and it was actually when I was on a treadmill at the gym that my legs gave way. I had various tests done before I was eventually diagnosed. It was a bit of a double-edged sword. I was pleased to get a diagnosis but I still had to face scepticism not only from family but from the medical profession".

"People at work were very understanding and helped by reducing my hours but there were others who felt it was all in my head and I just needed to pull myself together. It can be an isolating condition and can lead to depression because you are on your own for long periods".

"This is why the society has been such a help. It helps me sort out getting benefits and offers advice about the treatments available. Things are progressing at the moment but I think I am probably as well as I am ever going to be. I try all sorts of methods and treatment such as modifying my diet and keeping a close eye on the amount of activity I do. I can still get exhausted quickly and when I go out I need the car or my electric scooter."

Oliver Rooke, 31, from Seaford, was in his first year at university when he fell ill with glandular fever. The then 19-year-old became so sick he had to drop out of his computers and management course and was never able to go back.

He said: "I had persistent fatigue both mentally and physically. I tried to do as much as I could by shutting off and ignoring what was happening. But eventually it all caught up with me. I eventually accepted the diagnosis and in the mid Nineties I joined the ME Society. It was good to speak to people who understood what I was going through and could offer their own help and advice about various diets, treatments and therapies that might be able to help."

Mr Rooke now runs a group for people in the Seaford area which is regularly attended. He said: "Perceptions have changed over the years and people are more accepting but there is still much that people do not understand".

"People often associate my tiredness with how they might feel after a long day at work when actually it is something much more intense than that. I have not been able to work since university as I become so mentally tired I cannot function any more".

"Although there is no cure the longer you have a condition the more you learn how to manage it . I used to try to live my life with the same energy and activities as I had lived before but this would lead to me overdoing it and I would crash down. So I learnt how not to overdo things and to conserve my energy and strength."

Jonathan Burrell, 44, from Hove, first became ill in 1989 when he returned home from travelling in Latin America with the flu. He was never able to shake off the illness and ended up having to give up his job and spent two years unable to get out of bed. He was also housebound for a further five years.

He said: "All I could do was sleep for 17 or 18 hours at a time. I had really bad muscle pain and headaches and mental fatigue. I could not manage to read anything for more than half an hour before I started getting pains. I had been really active, I played football, had run in marathons and half marathons and was a regular swimmer. To find myself completing a half marathon one day and then a few weeks later struggling to walk ten yards to the end of the drive was devastating."

Mr Burrell's condition began to stabilise during the Nineties and as his strength recovered he found himself slowly able to do more. He joined a yoga group, which was the first activity he had been able to manage since his diagnosis and was an important step on the road to recovery.

Since then he has gone from strength to strength, managing to find a part-time job and recently taking up football and running again. He met his partner Tamasin Cottingham, 31, while at a group meeting of the society and they have been making steady progress together.

He said: "I am further along than Tamasin but she is improving all the time. "I am probably about 80 per cent recovered now. When I remember what I was like and look at myself now I can see just how far I have come.
There is light at the end of the tunnel".

More about the condition
# The term ME originates from the Fifties when there were several outbreaks of a non-paralytic polio-like illness in Britain.
# Notably the Royal Free Hospital, Hampstead, had to close when 292 of the medical and nursing staff went down with the illness in 1955 and some are still affected today.
# Well known people affected by ME include yachtswoman Clare Francis and Esther Rantzen's daughter Emily. 

# More details about the society can be found at www.measussex.org.uk]]><![CDATA[The tablets made me feel like a zombie - life with ME]]>http://www.newsandstar.co.uk

There is a sparkle in Tracy Elliott’s eyes as she reminisces about this year’s summer holiday, when the family spent three weeks on a campsite in France, playing cricket, table tennis, boules, and swimming in the sun.

It certainly sounds idyllic, but for the mum of four it was an extra special experience, because it was the first time in years she had felt strong enough to join in and enjoy quality, fun time with her children; Joshua, 15, Robbie, 11, Bruckman, 8, and three-year-old Dharma.

Tracy, 38, started feeling ill 11 years ago, yet it was only in February of this year she was diagnosed with ME.

Sitting in her Carlisle home with husband Tony, she recalls: “It started when I was pregnant with my second son, when I had dehydration and sickness.

“I then had throat problems and pains and was basically exhausted. It was a feeling that didn’t go away. I’d often lie on the couch all day. I was too tired to do housework or play with the kids. I didn’t even have the energy to climb the stairs. I’d avoid going to the toilet for as long as possible, simply because I couldn’t face going upstairs. It took all my strength just to keep my eyes open.”

At first Tracy’s tiredness was put down to her being a mum of two, and then three when Bruckman came along. She found some friends lacked sympathy, and simply thought she was lazy.

Tracy knew it was something more serious, yet despite visits to the doctor a couple of times each year, ME was not considered.

She was repeatedly tested for thyroid problems, anaemia, even the early menopause, but they were all discounted.

And it wasn’t just the physical symptoms and the exhaustion that were making life almost unbearable. The fact Tracy spent years not having her condition confirmed took its toll mentally, then there was the guilt she felt at being unable to do things with her children like a normal mum. “It makes you feel like you’re going loopy, because I didn’t know what was wrong,” she says. “And because I just wanted to sleep all the time, I couldn’t play with the kids. Even if they read to me after school I’d just fall asleep.

“And it wasn’t just the physical side; it also causes you to lose confidence and feel depressed. At one point I was given anti-depression tablets, but they made me feel worse, like a zombie.”

For a few years the family moved around because of Tony’s football career, which made things harder.

But through it all Tracy could always rely on his support. The couple hold hands across the table and Tracy smiles: “Tony has always been there. I would have really bad mood swings, because of it and I suppose there had been a bit of jealousy too, because Tony could have a fun time with the kids. But he took it. I know I wouldn’t have got through it without him.

“I’m sure if someone didn’t have such an understanding partner, a marriage could easily break down. But he’s always believed in me and we have got through it together.”

For ex-Carlisle United keeper Tony, also 38, there was never any question he would give up on Tracy, even through the hardest times. “The thing is, we are that close. We are not just husband and wife, we are best friends,” he says emphatically. “We always talk about things and do everything together. And she’s always believed in me, so it works both ways.

“I am the opposite to Tracy, I have so much energy and drive, and can last the whole day without resting, the opposite to how Tracy was. But I have never ever given up on her, and I never would.”

But there’s no doubt it was frustrating for him too. “It was hurting me to see Tracy in that way. I always thought it was ME, but it was just so hard to get it diagnosed. We tried and tried to get a diagnosis, and had blood test after blood test.”

It was in Autumn 2007 that they finally had a breakthrough. A woman Tracy knew at the toddler group, who has ME, said it sounded like Tracy had it too. By chance she saw a new doctor at her surgery, who suggested she go to a specialist clinic in Keswick. “They asked questions there and said there’s no doubt it’s ME. When we left, Tony put his arm round me and I felt such relief, I just broke down. I finally knew that I wasn’t going loopy and there was a name for what I had.”

Tracy now goes to the Carlisle ME/CFS Support Group meetings, held twice a month, at Wigton Road Methodist Church. “It’s amazing to speak to other sufferers, to know it’s not just me, and to get advice if I need it,” she says. “I have a good routine now.

“All the kids help. Josh has always helped, and even Dharma likes helping to clear the table. When I used to do the school run, I would come back and just get into my pyjamas. I had the excuse that Dharma needed her sleep, because she was little. But now I don’t have to do that.”

Although Tony still travels for work – he is on the academy staff at Liverpool FC and coaches the England futsal team, among other commitments – the family are settled back in Carlisle and Tracy is getting her life back on track.

The couple now want to help raise awareness of an illness that is still so misunderstood, and often takes a long time to diagnose, causing misery for those affected.

“There’s a lack of understanding about the illness,” adds Tony. “There’s no drug or operation, it can’t be cured. People need to become more aware of it. And yes it’s about people with ME, but there are also the carers, people like me, who it affects.”

He plans to raise funds for the support group in the near future through his work.

In the meantime, Tracy is slowly getting her life back on track.

“There’s no treatment for ME, but what you can do is treat the individual symptoms,” she explains. “So I can use painkillers for my throat or aches and pains. I am on a more even keel now. I listen to my body more, instead of pushing myself and getting too tired, or not doing enough and sleeping too much. I do the three trips to school now, and the school routines help. I can relax during the day, but I don’t sleep during the day.

“I talk to the children more, and listen to them reading. My confidence has come back. A year ago I didn’t feel like this. It’s still a struggle but it’s definitely getting easier.”]]><![CDATA[Why is Chronic Fatigue Syndrome such a Misunderstood Illness?]]>
The American Chronicle - www.americanchronicle.com

If you told the average person in the United States that you had Chronic Fatigue Syndrome, they would most likely give you a funny look. For many, the words Chronic Fatigue Syndrome conjure up the idea of people that are lazy or hypochondriacs.

The Centers for Disease Control estimates that millions of Americans in the U.S. suffer from chronic fatigue syndrome. If so many people that are affected by this disease then why is it often ignored or dismissed as an illness that is "all in your head"?

Chronic fatigue syndrome or CFS was first described by doctors in the 1700s, it was first named in the 1980s. It remains a controversial diagnosis because it an illness that is diagnosed out of exclusion of other illnesses.

Basically there is no test that can confirm that you have chronic fatigue. A doctor must see that your symptoms fit the profile and rule out all other diseases to diagnose you as having CFS.

More recently the CDC has found genetic consistancies among CFS patients. This may finally give the much needed credibility that patients need to prove to the medical community that CFS is a real illness.

The CDC's Dr. Suzanne Vernon says that these genetics tests show that "there is a clear biologic basis for CFS, and knowing the molecular damage involved will help us devise effective therapeutic intervention and control strategies."

Right now the only treatments available to CFS patients are alternative treatments that include vitamins and health supplements. These alternative treatments can often be very expensive and have little science to back up their use.

It is estimated that most CFS patients spend hundreds if not thousands of dollars a year on vitamins, looking for relief from their symptoms. They also turn to chronic fatigue syndrome forums and the internet to find out what treatments other patients are currently trying.

Having a test that can concretely diagnose chronic fatigue syndrome may lead to research and real medical treatments. A test would also help remove a lot of the stigma that CFS patients face.

This disease is so misunderstood because the science is not yet there to prove it is a real disease. This is not to say that it isn't real, but we do not yet have the medical research to prove that it is real.

As the medical community catches up and more research is conducted, it will become an acceptable diagnoses to doctors and the community at large.]]><![CDATA[Virus Is Found in Many With Chronic Fatigue Syndrome]]>www.nytimes.com

by Denise Gardy

Many people with chronic fatigue syndrome are infected with a little known virus that may cause or at least contribute to their illness, researchers are reporting.

To read more, go to: http://www.nytimes.com/2009/10/09/health/research/09virus.html?fta=y
]]><![CDATA[Is a Virus the Cause of Fatigue Syndrome?]]>www.nytimes.com

by Denise Grady

Could a virus be the cause of chronic fatigue syndrome?

A study published last week in the journal Science suggested that might be the case, reporting that many patients who had the syndrome were infected with a recently discovered virus.

To read more, go to:
http://www.nytimes.com/2009/10/13/health/13fatigue.html?_r=1]]><![CDATA[Re: The tablets made me feel like a zombie - life with ME]]>http://www.newsandstar.co.uk

by Dr John H. Greensmith

Tracy Elliott's experience of being as thoroughly investigated, as she was, to eliminate other illnesses, before being diagnosed with M.E. (The tablets made me feel like a zombie - life with ME, Cumbria News & Star, 24 september 2008) and then finding that, apart from prescription drugs to treat particular symptoms, the best course of action is to rest and gently pace activity, when she can manage is, sadly, the exception rather than the rule.

Hers is in stark contrast to perhaps a majority of M.E. (Myalgic Encephalomyelitis) sufferers, who are told that they are tired due to lifestyle choices, have an illness of psychiatric origin and treated with Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET), which either do no good and sometimes make people with M.E. worse.

It's astonishing, then, that the NICE (National Institute for Health and Clinical Excellence) guidelines recommend GPs to refer patients for these two treatments and some M.E. patient support groups are backing them.

Dr John H Greensmith
ME Free For All. org ]]><![CDATA[ME Sufferers Rely On Alternative Medicines]]>www.medicalnewstoday.com

More than a third of patients with long-term fatigue conditions like Myalgic Encephalomyelitis (ME) believe complementary and alternative medicines (CAMs) are more effective than traditional medicine in treating their illness, research launched at the British Pharmaceutical Conference (BPC) in Manchester reveals.

98% of patients believed alternative therapy should be available through the NHS.

Researchers from Robert Gordon University in Aberdeen found that sufferers of chronic conditions had relief from their symptoms when they used CAMs.

The findings showed:

- About 34% of participants believed that CAMs were more effective in alleviating their symptoms (including pain and malaise, or a general feeling of low energy and of being unwell) than traditional medicines;

- 60% believed that taking CAMs kept them well;

- 73% of participants who reported using CAMs believed that it had improved their health;

- Of those who reported using chiropractics, 83% said they very satisfied with the treatment

- 46% believed that a combination of CAM and orthodox medicine was better than using traditional medicine alone.

Lead researcher, Dr Yash Kumarasamy said: "Many patients who have a long-term fatigue condition turn to alternative therapies because they feel that orthodox treatments failed to work for them, or because they experienced a lack of support from their healthcare team."

"Patients need to know how important it is to consult a healthcare professional before they take complementary or alternative medicines, or stop taking prescription medication. Pharmacists don't just dispense medicines - they are healthcare professionals with a broad range of knowledge and can help people with expert advice and support in managing their health."

About Myalgic Encephalomyelitis

Myalgic Encephalomyelitis (ME) is a chronic, inflammatory, primarily neurological disease that affects the central nervous system, the immune system, the cardiovascular system, the endocrinological system and muscoskeletal system. It can cause a wide variety of symptoms, including changes in sensory tolerance, visual problems, exertional muscle weakness, difficulties with co-ordination and speech, severe fatigue, cognitive impairment, problems with balance, subnormal or poor body temperature control and pain.

The British Pharmaceutical Conference 2008 (BPC)

BPC 2008: Pharmacy in the 21st Century: Adding years to life and life to years. In 2008, as the NHS marks its 60th anniversary year, BPC will examine how pharmacy and the pharmaceutical services are helping to add years to life and life to the year of the UK population. The profession of pharmacy plays an important role in meeting the healthcare challenges associated with the UK's ageing population.

How can pharmacists contribute to caring for the population as well as ensuring quality of life? Increasingly, scientists and practitioners have to consider the cost implications of this conundrum, and the evidence base for all interventions is becoming of paramount importance: BPC 2008 will debate these issues and open up discussion on them. Visit: http://www.bpc2008.org/

The main sponsors of BPC 2008 are: Boots The Chemists (Lead Sponsor), AstraZeneca (Associate Sponsor and BPC-PJ Careers Forum Platinum Sponsor), Pharmacists' Defence Association (PDA) (Associate Sponsor) and GSK (BPC-PJ Careers Forum Platinum Sponsor).

Research released at BPC is published in the International Journal of Pharmacy Practice (IJPP).

Also Appears In:  Neurology / Neuroscience,
Save time! Get the latest medical news headlines for your specialist area, in a weekly newsletter e-mail. See http://www.medicalnewstoday.com/newsletters.php for details.

© 2008 MediLexicon International Ltd]]><![CDATA[When illness is mostly in the mind]]>http://www.newscientist.com
Interview of Simon Wessely

by Clare Wilson

Mind over body

Can people think themselves sick? This is what psychiatrist Simon Wessely explores. His research into the causes of conditions like chronic fatigue syndrome and Gulf war syndrome has led to hate mail, yet far from dismissing these illnesses as imaginary, Wessely has spent his career developing treatments for them. Clare Wilson asks what it's like to be disliked by people you're trying to help

How might most of us experience the effects of the mind on the body?
In an average week you probably experience numerous examples of how what's going on around you affects your subjective health. Most people instinctively know that when bad things happen, they affect your body. You can't sleep, you feel anxious, you've got butterflies in your stomach... you feel awful.

When does that turn into an illness?
Such symptoms only become a problem when people get trapped in excessively narrow explanations for illness - when they exclude any broader consideration of the many reasons why we feel the way we do. This is where the internet can do real harm. And sometimes people fall into the hands of charlatans who give them bogus explanations.

Is that how chronic fatigue syndrome can start?
Often there is an organic trigger like glandular fever. That's the start, and usually most people get over it, albeit after some weeks or months. But others can get trapped in vicious circles of monitoring their symptoms, restricting their activities beyond what is necessary and getting frustrated or demoralised. This causes more symptoms, more concerns and more physical changes, so much so that what started it all off is no longer what is keeping it going.

One of the enigmas is why certain infections, like glandular fever, have an increased likelihood of triggering chronic fatigue syndrome (CFS), while others, such as influenza, do not. We also don't know why people who have had depression are twice as likely to develop CFS. I get cross with people who want to explain one and not the other. Some people take too psychiatric a view of CFS and ignore the infective trigger, whereas others want to think only about the infection.

So how do you treat CFS?
The first thing you have to do is engage people. I see them for 2 hours, which enables me to take a proper history to ensure I understand their symptoms and how the illness is affecting them. This helps people to open up, as they can see I am interested in their problems and taking them seriously.

With many people I genuinely do not know why they are ill. Or if I do, if they had glandular fever five years ago, say, I tell them there is nothing I can do about the original trigger. What makes a difference is what happens next. Then we get on to the practical stuff, such as finding out how people deal with the condition. Are there things they are doing that may not be the best for recovery? Then I recommend cognitive behavioural therapy and tailored programmes of gradually increasing activity levels.

How successful is your treatment of CFS?
Roughly a third of people completely recover and a third show good improvement. About a third we can't do much for.

What about those people who have such severe CFS they are bedridden?
In that kind of disability, psychological factors are important and I don't care how unpopular that statement makes me. We also have to consider what those years of inactivity have done to their muscles. People know that if you break your leg, when you take the plaster off there's nothing much left. If you've been in a wheelchair for some years, the laws of physiology haven't stopped.

Your most cited paper claims that conditions such as CFS, irritable bowel syndrome and fibromyalgia are all the same illness.
If you ask people with irritable bowel syndrome whether they suffer from fatigue, they all say yes. It's just gastroenterologists don't ask that question. Likewise, if you talk to someone with CFS, you find that nearly all of them have gut problems. If you systematically interview people with these illnesses, you find that a big proportion of these so-called discrete syndromes have a large overlap with the others. You have to think that we have got the classifications wrong.

So do you think these syndrome labels are arbitrary?
Each country has different syndromes. They don't have CFS in France; they have a strange one, spasmophilia, where a person has unexplained convulsions. In Sweden they have dental amalgam syndrome, which hasn't really caught on here. In Germany they believe low blood pressure is bad.

Where does Gulf war syndrome fit in?
I'd read about people with Gulf war syndrome in newspapers. They looked incredibly like my CFS patients except they were in uniform. Behind them was an interesting scientific conundrum calling out for epidemiological research. Someone had to ask: "What are the rates of illness in those we sent to the Gulf compared with those we haven't?" And that's what we did. We showed that serving in the Gulf had definitely affected the health of a proportion of those personnel, even though this was not a new "syndrome".

Is looking into Gulf war syndrome how you came to focus on military health?
Yes. I like dealing with military personnel - I admire what they do. Looking back on my career, it is military research that has given me the most straightforward pleasure, and the satisfaction of knowing we have had a positive impact on policy.

What kind of input has your team had on military policy?
We have provided information on rates of psychiatric disorders in troops. For example, alcohol is a bigger problem than post-traumatic stress disorder (PTSD). We've shown that extending operational tour length has a bad effect on people's morale and mental health. We also did a comprehensive review of prior research into PTSD and concluded that psychological debriefing after a traumatic incident doesn't help. Normal soldiers need to keep away from people like me - psychiatrists and counsellors.
Alcohol is a bigger problem than post-traumatic stress disorder in troops

Your recent research is on people who claim that mobile phones make them ill. What's going on there?
My colleague James Rubin and I showed that people who believe they are sensitive to mobile phones aren't able to tell the difference between sham and real phone signals. So are these people all making it up? Of course not. They've got themselves into a situation where a mobile phone triggers symptoms, but it doesn't do so through electromagnetic radiation.

What is it like to receive hate mail?
There have been times when it has been pretty unpleasant. But it goes with the territory. I'm not targeted by my own patients. If I ever thought that my patients or peer group thought I was a bad person, I would be worried. What matters is that the research we do is good quality. That's what you stand or fall by.

Profile
Simon Wessely trained in epidemiology at the London School of Hygiene and Tropical Medicine and psychiatry at Maudsley Hospital in London. He founded the Chronic Fatigue Syndrome Research and Treatment Unit at King's College London and the first specialist NHS clinic for CFS at what is now King's College Hospital. He now focuses on military health and terrorism psychology, and is an adviser to the UK's Home Office and Ministry of Defence.]]><![CDATA[Listen to your body after swine flu]]>http://www.guardian.co.uk

by Emine Saner

Rushing back to work after swine flu could be dangerous. Taking your time to recover is the best way to avoid complications

Last week a friend of mine, Emma, a 31-year-old publisher, developed what she thought must be swine flu. She decided it wasn't any worse than a bout of flu she'd had before, and followed the NHS guidelines and stayed at home, waiting for it to pass.

"I took Monday, Tuesday and Wednesday off, and went back to work on Thursday," she says. "My boss took one look at me and said I looked as if I should be in hospital. I must have looked really ill, because I noticed other colleagues giving me looks of horror. I thought I was getting better – I thought I had shaken it off and was over the worst of it. I didn't feel completely well, but I thought it was nothing a couple of nights' sleep couldn't fix."

She was sent home, but decided to go back into work the following Monday – only to be sent home again. "The problem for me is it seems to come in waves. You think you're over it, then I start to feel like I have a fever again. The office environment can make symptoms feel worse as well – the lighting made my headaches worse, and the dry, air-conditioned air made me cough. I suppose we live in a culture where work is all-important – I've never taken two weeks off for sickness before, and I feel slightly aghast at it. It feels like a bad thing to do."

When Emma finally went to see her GP, she was told it was too late to start taking Tamiflu, but was "prescribed" rest. "That's what I've been doing, but rest seems to be very underrated as a medicine," she says. "We are so used to being able to fix things with drugs."

Whether it is because the outbreak of swine flu has coincided with economic meltdown and fear for our jobs, or whether it's because we live in a society where our lives are so relentless that we're just not used to taking time off, anecdotal evidence suggests many of us are forcing ourselves back to work too soon. It is now estimated that up to half of the UK's workforce could need to take time off work at some stage because of swine flu, and the government is considering plans to allow anyone infected with swine flu to stay off work for 14 days without the need for a doctor's note (a week more than the current seven days they are allowed without a note). "We don't want people to feel obliged to leave the home or return to work when they are still unwell or put an unnecessary burden on GPs in a pandemic," said a department of health spokesman.

"The primary danger of going back to work too soon is infecting other people, particularly people who may be susceptible to swine flu," says Ann Robinson, a GP. According to the Health Protection Agency, people are most infectious to others soon after their symptoms appear, and continue to be for around five days as the symptoms subside.

"After a week, you'd be unlikely to be contagious. But if you push yourself with any viral infection, there is the possibility of developing something nastier such as pneumonia. It's the same reason you shouldn't go for a six-mile run while you're ill – your body has enough to cope with."

Physical over-exertion seems to be one of the main factors in prolonging illness, says Robinson, so it largely depends what your job is. "Going back to work in an office and sitting at a desk won't affect you as much as if you're a gardener and you spend all day digging and lifting heavy loads, for instance. The vast majority of people get over the vast majority of viruses in about a week, though there are some, such as glandular fever, which linger longer. It also depends on your immune system. Listen to your body – if you're still running a fever, coughing up green muck and feel nauseous at the thought of getting on the train or bus, don't go into work." You should rest, she says, but not lie in bed for days, particularly if you are obese or smoke as even two or three days in bed can put you at risk of developing a thrombosis – take it easy at home, she says, but get up and about.

There isn't any evidence, so far, that swine flu hits people harder than any other form of flu, despite news of a study published in the science journal Nature last week. Experiments on the effects of swine flu on animals at the University of Wisconsin showed that the virus was able to penetrate the lungs to a deeper level and caused greater respiratory damage than other forms of flu, and could be more likely to cause pneumonia. Professor Ian Jones, an expert in virology at the University of Reading, says it doesn't automatically follow that swine flu is any harder to get over than current seasonal flu – he points out that these experiments were performed on animals that were given a far higher dosage of flu than a human would usually catch from another person.

"If we say this flu is three or five times worse than current seasonal flu, what does that mean? Current seasonal flu tends to be quite wimpy, but Spanish flu [the outbreak in 1918 which killed an estimated 50 million people] was considered to be 1,000 times worse, so compared with that, swine flu doesn't look too bad. The evidence so far is that it tends to be mild and over fairly quickly." 

However, as with any viral infection, there could be longer-lasting health problems. It is thought that chronic fatigue syndrome, also known as myalgic encephalopathy (ME), can be triggered by viruses, including flu. The symptoms of ME can range from tiredness and recurrent mild illnesses to debilitating conditions that can affect every area of a person's life.

"The causes of chronic fatigue syndrome and ME are unknown but it is accepted that a common triggering factor is acute viral illnesses and or stress," says Professor Leslie Findley, a consultant neurologist who specialises in chronic fatigue syndrome. "It is possible that swine flu could trigger chronic fatigue syndrome in people who are vulnerable to it, and exacerbate symptoms in people who already have chronic fatigue syndrome." But Findley stresses that any viral illness can trigger it, "and we have no evidence that swine flu will be any worse, so you have to keep it in context".

Dr Charles Shepherd, medical adviser at the ME Association, says: "I am comparing swine flu to 'ordinary' flu here, and some people do report that flu was their trigger, but I should say that it doesn't tend to be a major trigger. Most fit adults get over flu and are perfectly healthy. But if there is going to be a major outbreak, some people are going to have post-viral symptoms and may go on to develop ME. So listen to your body. Anyone who still feels under the weather two weeks on should consult their doctor to see if they have got post-viral syndrome coming on. It is important to get appropriate management early on."

There is no drug treatment, but people should take adequate time to rest and recuperate. "We do know that people who force themselves back to work too early seem to be the ones who go on to develop long-term problems."

How to get better quicker

A GP's top tips for recuperating well

• Once you are feeling over the worst, go for a gentle walk to get some fresh air. But don't over-exercise, and go back to it gradually.

• Don't panic if you don't feel like eating. Try to eat small meals, often. This is better than going from no food to bingeing. It sounds obvious, but eat healthy food (below)

• There's really no evidence that supplements boost the immune system, so don't waste your money. Also, don't listen to the scaremongers – the odds are you will be back to normal within a week or so.

• Get enough sleep – between eight and 10 hours a day, if possible.

• Try to avoid crowds – you don't want to pick up another bug on the rebound, which is what can happen.

• Moderate your alcohol intake. It's not so much the alcohol itself – although drinking too much does put your body under strain – it's the behaviour that goes with it, such as staying out late, not eating properly and being in crowds.

Dr Ann Robinson

Guardian.co.uk © Guardian News and Media Limited 2009
]]><![CDATA[Unlikely Bedfellows: Prostate Cancer and Chronic Fatigue Syndrome]]>www.plosone.org

To read the article, please go to:

http://www.plosone.org/annotation/listThread.action;jsessionid=A8F2093E3A7D0A23470C5017CC7A19C4?inReplyTo=info%3Adoi%2F10.1371%2Fannotation%2F5217bc5f-fac3-4cca-bb52-a6914754608c&root=info%3Adoi%2F10.1371%2Fannotation%2F5217bc5f-fac3-4cca-bb52-a6914754608c]]><![CDATA[Re: Jane's Flash Recovery]]>
[A version of this letter was published in the Mail on Sunday, paper version, 1 March 2009]
There is no miracle cure for M.E.

Practioners of the treatment for M.E., which led to Jane Flowers's, "Flash Recovery" (Jane's Flash Recovery, YOU Magazine in the Mail on Sunday, 22 February 2009) claim 85 per cent sucess.

AFME 2008 Survey reavealed that only 53 per cent of our survey respondents found it helpful, 31 per cent said it made no difference and 16 per cent said it made them worse.

ME is a chronic fluctuating illness and no one treatment has proven to be beneficial to everyone affected.

More research is needed into the effectiveness of treatments.

Sir Peter Spencer
CEO, Action for ME
by e-mail]]><![CDATA[I believe there is a cure for ME - I've tested it]]>http://www.dailymail.co.uk

by Zena Gibson

Esther Rantzen refers to her daughter's illness as Chronic Fatigue Syndrome and not ME (I'm risking my dignity on I'm a celebrity to prove to myself I can survive outside the comfort zone, says Esther Ranzten, Daily Mail, 13 November 2008) because that's what it's called in medical terms.

In 1994, after a time of great stress, I had a series of viral infections which resulted in ME (as it was then called). I was diagnosed at St. George's Hospital, London, in early 1995. I later took part in medical trials foe ME and again my illness was confirmed. I had to give up work and my social life declined almost to nothing. The only advice given by the medical profession was to 'manage' my illness, which I did for 12 years. I never tried any alternative procedures because I reasoned that if they worked, we would all get better.

In January 2007, a friend told me about the Lightning Process (LP) and how it had 'cured' two relatives of hers. I wasn't impressed; in fact, I was rather irritated because over the years many cures had been suggested.

Then the Daily Mail published a double-page spread on LP and linked ME to adrenaline. I'd already had a feeling about this connection because I felt ill after excitement and joy as well as negative stress. I went to the website and it seemed to good to be true, so I asked several friends to look, too.

Between us we decided it was worth a try, even if it only helped me cope with the ME.

I took the three-day course in February 2007 and was astounded that, despite my scepticism, it worked. First to return was my energy, then all the rest of the symptoms went.

Since then I have had two blips, each occurring when I have been stressed but, when I felt my symptoms returning, I have carried out the LP and on each occasion they have cleared up in about a week.

It's hard to believe that all the very real physical symptoms we suffer with ME can possibly be caused by raised levels of adrenaline, but they are.

This is not an imagined illness; it is very real. It is not 'in our mind' but is the brain's reaction to stress.

They called it Yuppie flu and that is the key - if you are laid back and don't care if you miss work, you won't get ME.

MY GP said it was caring, conscientious people who got ME. Call it what you will, CFS or ME is within your control. You can get rid of it and keep it away.

Zena Gibson
Milford-on-Sea
Hants]]><![CDATA[Alternative Reality]]> http://thedubliner.typepad.com/the_dubliner_magazine

Alternative medicine is rubbish, says Francis Hourican. The only thing it will permanently affect is your wallet.

One of the colour supplements just ran an article on the miracle of osteopathy. You know the kind of thing – despairing family, failed by mainstream medicine, turns to osteopathy. After just two sessions – miracle! – ailing child is completely cured and hasn’t given a minute’s trouble since. If you didn’t read the article, you’ve read a hundred like it – for osteopathy substitute acupuncture, reiki, craniosacral therapy, ayuverdic massage, tuning fork therapy, whatever.

Returning to the article in question: “We increase fluid circulation in the skull and down the spine and aid the circulation of blood and lymphatics,” explains the osteopath. What? She’s actually manipulating spinal fluid! Her gentle fingers are working through hard bone (in a non-invasive kind of way) getting the fluid to swish about.

It sounds a little dangerous, but we’d love to know how it’s done. Unfortunately we’re not told. It’s the kind of feel-good story, big on happy, smiling photos and short on science, that has victims of this rubbish tearing our hair out.

I have used CAM (complementary and alternative medicine) in one form or another since the age of three. Over the years I’ve tried homeopathy, aromatherapy, ear candling, acupuncture and herbal supplements in an attempt to find a cure for several chronic ailments, including asthma, eczema and bronchitis.

In my view, they don’t work. None of them work.

In 2001 I fell seriously ill. I got out of bed one morning to find my head spinning so much I could hardly stand. It seemed like a bad flu but wouldn’t go away. A month later I was still dragging myself around, dark rings under eyes, glands swollen, head drooping. I was listless, melancholic and bitchy. After a year it was clear this wasn’t going away. I began to panic – in a listless kind of way.

Nobody was using the word, but I had ME, a debilitating illness usually triggered by a virus such as glandular fever. It is diagnosed by default – when they’ve ruled out everything else and you still feel dreadful, they call it ME. Doctors haven’t a clue how to treat it, so many of them dismiss it as psychosomatic.
It became clear that the GPs had nothing up their sleeves except antibiotics and more antibiotics (which were having no effect), so when I heard about an acupuncturist who was getting great results, I seized on it.

My first consultation was heartening. The acupuncturist listened carefully, in perfect stillness.
“Can you help me?” I asked.
“Yes,” she said, nodding matter-of-factly and staring at me in silence.

I was slightly thrown. I’d expected some kind of diagnosis. But then I had not yet read The Book. Sold to me then and there by my acupuncturist, The Book would apparently answer all questions. Written by an eminent professor, The Book boiled all ill-health down to “imbalance.” When your ‘chi’, or life force, is out of balance, illness takes hold. Only through the exceptional sensitivity of the acupuncturist can your particular imbalance be divined and the natural flow of your chi restored.

After just one session I felt I was already regaining balance. I was buzzing, euphoric. Not only had my symptoms cleared up but I felt strangely happy and at peace. Overnight I became a convert. I went about with a spring in my step, extolling acupuncture to anyone who’d listen.

Why did more people not know of this miraculous cure? It was my mission to bring acupuncture to the suffering – perhaps even become an acupuncturist myself. I flattered myself that I had the sensitivity – sure, I was useless at chemistry, biology and all the subjects required to get into pre-med, but, by God, everywhere I looked I could see imbalances! Clear as day.

I bought a huge book called Chinese Medicine but it couldn’t tell me all I wanted to know – who found out that there were 12 meridians in the body, each linked to a vital organ? My acupuncturist simply said that it came about because Chinese soldiers in battle began to notice how good they felt after being struck with spears, or something like that… But no matter. I felt a million dollars and this was just the beginning! A few more months and I’d be unstoppable. I’d conquer the world!

A week later, I crashed. I couldn’t get out of bed – except to see my acupuncturist. I dragged myself in. “How are you – in yourself?” she asked, looking significant. “I’m dreadful” I replied. “I haven’t been out of bed for a week.” She concluded, with some satisfaction, “Law of Cure.” I’d read about the Law of Cure in The Book. It meant that I was going to get worse before I got better. It was a good sign. A proof that all those toxins were being expunged. Don’t panic if you feel worse – it’s a good sign. Of course if you get better without getting worse, that’s also a good sign. Everything’s a good sign.

Law of Cure seemed to go on and on. I kept waiting for the upturn, the moment of absolution. My acupuncturist gave me charts to fill in. I had to make a daily entry: date, hours of sleep, how am I feeling morning, how am I feeling evening, energy score out of ten. I filled them in meticulously, ever vigilant for signs of recovery. Reading over them now, they look like the final entries in the log book of a ghost ship: “May 2nd. Chesty, groggy, frustrated – but feel it may be working itself out of system.” A week later: “May 8th. Will I ever get out of bed?”

I’d report my energy scores to my acupuncturist. “Three,” I’d say, trying to shock her. But she was unfazed: “Oh! That’s good.” She developed a strong hold over me. After sternly vetoing a blood test (“unnecessary”), she dispensed advice on how to deal with my mother, who was distraught and hostile to acupuncture: “Turn your body at right angles to your mother when she is arguing with you, place a protective hand over your breast, and surround yourself psychologically with white light.”

But try as we might, the acupuncturist and I couldn’t get that initial, glorious honeymoon period back. Even extreme measures such as sticking needles in my eyeballs and fingertips failed to get a reading on the Richter scale – it was like putting a dead cat under a defibrillator. I was deathly, sluggish, and living in dread of a needle in the perineum (the area between anus and groin). I had heard rumours of this on the grapevine – it was for really serious cases. The thought of arriving for treatment and being informed that it was the perineum today brought me out in a cold sweat.

I hoped that through willpower, I might start to improve. My charts reflected this. From my honest initial energy score of three, I was defiantly entering five or even six every other day. But people around me couldn’t see a change. After several months I had to admit that nothing much was happening.

Next up was a nutritionist. She looked more ill than I did, and spoke in that irritating, soothing tone peculiar to people who work in health-food shops. I learnt that the problem was in fact candida – bad bacteria running rife in my gut and spreading through my body like wildfire. (I did have candida but learned later that it is a symptom of ME, not the cause.)

I had to cut out bread, yeast, sugar, flour, alcohol, pasta, white rice, cereals, cheese, milk, eggs, butter. Meat was alright, but not mustard. That left a cheerless diet of brown rice, rice milk, millet (birdfood) and quinoa (a seed-like cereal taken by the Incas). Then there were the supplements: grapefruit seed extract, plant sterols, garlic capsules. We’d starve the candida and then blitz it with the antibacterial supplements. “You’re going to feel great,” said the nutritionist, but not like she meant it.

The diet did starve the candida. It also starved me. Three weeks later I had lost a stone, was gaunt and hollow-eyed and could think of nothing but food. I felt like an anorexic, controlling each mouthful. I was obsessed with fighting candida, and combed the Internet for products. There was no shortage of stuff – Probio5, Pau d’Arco, Caprylic acid, yew tree, olive leaf.

I discovered that 85% of Americans have candida, and most of them don’t even know it! Of course there was a disclaimer at the end of each product (“Not intended to treat, cure, or prevent any disease”) but what did that matter? That was just a legal formality. Look at the testimonies: “Since I started the grapefruit seed extract I feel I have finally got my life back. Now I go up and down the stairs several times a day and have even started playing the piano again. Thank you for this supplement!” enthuses John from Oregon.

It gave me a sense of empowerment to take ownership of my health. It was a full-time job and costly too, what with all the vitamins, supplements and specially sourced food. I couldn’t say I felt better – I was nauseous most of the time, but my nutritionist told me that was a good sign (the bacteria were dying off!). But there was a catch – you can’t actually get rid of candida. Like the war on terror, it can’t be rooted out, just kept under tight control. Which meant more supplements…

Thus I found myself surrounded on all sides by modern day mountebanks, defined by Dr. Johnson as a “doctor who mounts a bench in the market, and boasts his infallible remedies and cures.”
So how to spot a mountebank? They go by many names: acupuncturist, aromatherapist, cranial osteopath, chiropractor, crystal therapist.

One of the most popular refuges for mountebanks – and arguably the most contentious – is homeopathy. In June an English academic decided to offer a prize of £10,000 to anyone who could provide verifiable evidence that it works. His view is that homeopathy, “in which patients are offered absurdly dilute solutions of various substances, is of no use whatsoever.”

In her new book, Suckers: How Alternative Medicine makes Fools of Us All, Rose Shapiro notes the ten characteristics of every branch of complementary and alternative medicine (CAM)

The Ten Characteristics of Complementary and Alternative Medicine

• There will be a disclaimer.
• It will be holistic (claiming to treat the whole you).
• Feeling worse will be a good sign.
• It will be based on centuries or millennia old wisdom and the method will not have changed over time, unlike conventional medicine which is constantly refining.
• It will flatter you, make you feel special.
• It will be supported by extravagant testimonials.
• A powerful establishment will be said to be suppressing it.
• It will sound too good to be true.
• It will not be used in a crisis (no one turns to alternative medicine for
a broken leg, appendicitis or a
heart attack).
• There will be no empirical evidence that it works. This, despite over $1 billion already having been spent on research into CAM.

Alternative medicine devotees are unperturbed by any of this – indeed science has almost become a dirty word for them. A trip to an acupuncturist or a cranial therapist is a lifestyle choice. And anyway, they think, it’s non-invasive. It’s difficult to know exactly what non-invasive means, but it’s definitely safe.
Except it isn’t.

Chiropractic medicine, for example, is so integrated that it comes as a surprise to learn not only that it’s CAM. In my view it’s downright dangerous.

Consider the case of Laurie Jean Mathiason, who suffered a massive stroke minutes after having her neck cracked by a chiropractor. As she was wheeled out to the ambulance the chiropractor muttered it was a “one in a million chance,” but in fact Canadian researchers found that stroke victims are five times more likely than controls to have visited a chiropractor in the week before their stroke. As a doctor said to Laurie Jean’s mother, “Never let those buggers touch you above the shoulders.”

Even worse are the alternative practitioners operating within the ‘cancer industry.’ Last month Clare GP Paschal Carmody was brought to trial by the families of three of his former patients who say he promised them a miracle cure for cancer through Photodynamic Therapy, an unproven alternative procedure. He was found not guilty of six charges of obtaining money by deception; the jury could not decide on the remaining 11 charges, and the case will be brought before the court again at the end of this month.

In the US, Shapiro cites cases of cancer sufferers being persuaded to stop chemotherapy and part with large sums for a more ‘holistic’ treatment. Paul McNamara paid $44,000 (€28,000) for his wife to undergo the ‘Rana System,’ a nutritional approach to beating cancer, which includes energy-zapping devices, Zen Chi massages, magnetic pulsers, coffee enemas, ozone therapy and thermal imaging. To no effect, of course.
It was the evangelical aspect of CAM that bugged me most.

Admittedly, mainstream GPs didn’t do me much good either. I found doctors bored and unhelpful. When I failed to respond to treatment, they decided that my illness was psychosomatic – the default diagnosis of an arrogant profession. It is cruel to tell an ill person that the problem is in their mind, and it’s this attitude that drives the sick into the arms of CAM. But I’d still take doctors, in their disinterest and cruelty, over the dangerously misplaced confidence of CAM quacks.

Very few alternative therapists will admit they can’t help. For a start, they need patients since the market is increasingly competitive. But worse, I believe they’re too complacent to admit that they don’t know what’s wrong, or that there are illnesses to which herbs and chi won’t respond.

Take the list of conditions they claim they can treat: asthma, acne, bronchitis, herpes, ME, learning difficulties, migraine, varicose veins, etc. Most doctors admit they have no idea how to cure ME, so how can someone with an internet correspondence course think they’ve cracked it?

The acupuncture did help me – for about a week. I now know that was because sticking needles in you releases endorphins. You get the same buzz from a tattoo. But it won’t cure anything.
For sick people in desperate need of help, someone who waltzes in with complete confidence is a liability.

A sick person will brush aside the lack of evidence and believe what they want to, or need to. The testimonials presented as evidence on every single alternative therapy website or pamphlet are meaningless. Even if they’re not actually made up, you can’t trust a sick person’s evidence. John from Oregon may indeed feel like he has “finally got his life back,” but that’s because he’s grasping at straws.

The good news is that I eventually found something which helped, but it wasn’t in the world of CAM. It was at the cutting edge of mainstream medicine – immunology. A four-year course of allergy shots didn’t cure me, but it gave me great relief, in which time my body returned to more or less its former health. I’m lucky – I had the emotional and financial support to keep looking for help.

But as Tom Kindlon of the ME Association of Ireland says, “Many ME sufferers have no money left because they’ve spent it all on alternative medicine.”]]><![CDATA[Diagnosis Danger for Men with M.E - AFME]]>Action for M.E ( www.afme.org.uk )

MEN who fear they have M.E. were today urged to visit their doctors, as it was revealed that thousands are putting their long-term health at risk through delayed diagnosis. Early identification of the illness, which affects an estimated 80,000 men in Britain, is critical in aiding a quicker recovery and can prevent the condition from becoming severe.

But a report released today by the UK’s leading M.E. charity, Action for M.E., shows that for 62% of men it takes over a year to discover what is wrong with them, and for 25% it takes more than two and a half years. Overall, figures suggest that 16,000 men in Britain are currently undiagnosed and unsupported.*

Part of the problem appears to be men’s reluctance to visit the doctor. Of those questioned by the charity, almost half said it took them over a month to initially seek help. 15% took over six months. Some doctors’ perceptions of the illness as a women’s disease may also play a role.

M.E. is a painful and debilitating illness, affecting many body systems, particularly the nervous and immune systems. In its most severe form, it can leave people house- or bed-bound for decades. Many need wheelchairs and some have to be tube-fed. Initial symptoms include overwhelming exhaustion, sleep problems and joint and muscle pain.

“It’s a well-known fact that men are less likely than women to go to the doctor, hoping their problem will go away of its own accord. But with this illness that’s the worst thing you can do,” said Trish Taylor, Chair of Action for M.E.

“Being a man with M.E. is not about soldiering on and pretending you’re not ill. It’s about getting informed, getting diagnosed and getting help.”

Today’s report also reveals the terrible personal cost M.E. can have on men’s lives. A significant number of men (22.7%) lose their home after falling ill, over half go through a divorce or relationship breakdown, whilst many initially keep the illness secret from family or friends.

“M.E.’s financial cost to the UK has been estimated at £6.4 billion per annum.** But the cost in terms of personal loss to those it affects is incalculable,” added Trish Taylor.

Of the men questioned most saw their income plummet as a result of the illness. Before their illness, less than 10% had an income under £10,000 a year. After developing M.E. that figure leapt to 64.2%

The World Health Organisation classifies M.E. as a neurological disease, and the NHS funding of specialist M.E. clinics is an acknowledgement that M.E. is a serious health problem.

Internationally, concern about M.E. is on the rise. In the US, the Centre for Disease Control (CDC) recently launched a major campaign to increase awareness and the need for early diagnosis.

The CDC estimates that over a million Americans have M.E./CFS, with only 20% being officially diagnosed. M.E. is three times more prevalent in women than men, and is often viewed as a middle-class white woman’s disease. But in reality, it affects 250,000 people of every class, age and ethnicity in the UK.

Today’s report on men with M.E. shows:
61.6% take over a year to get diagnosed
A quarter (25%) take over 2.5 years to get an official  diagnosis
51.8% suffer a divorce or relationship  breakdown
22.7% lose their home

When first diagnosed almost a third (30.3%) do not tell employers,  and 39.1% do not tell their families.
88.5% do not initially disclose their illness to friends 14.6% take over six months to first visit a doctor
42.7% take over a month to seek medical advice
And almost a third (27.3%) feel that their gender impacts on how they are treated by the medical profession during the process of diagnosis]]><![CDATA[Tiredness that turned me into a total zombie]]>
Worcester News - www.worcesternews.co.uk

HOW do you go from a high-flyer to a bed-ridden zombie who finds even speech a soul-destroying struggle?

To find out, you need look no further than Joe Green, a once hard-working financial director who reached the pinnacle of his profession only to plummet to unimaginable depths.

Joe had been a divisional director and experienced independent financial adviser employed by the Clarke Roxburgh broking group in Malvern, where he worked on behalf of 1,500 clients for 30 years.

It was during this time that Joe, of Colwall, near Malvern, was struck by a deeply misunderstood condition that turned his life upside-down.

He soon found it difficult to get out of bed, let alone go to work, and the harder he fought against it, the weaker and more helpless he became.

This crushing condition is chronic fatigue syndrome (CFS).

But how did Joe find himself in such a dark and empty place?

The answer eludes him, though he has his theories.

Joe is a self-confessed perfectionist and this perhaps put pressure on his body and mind, triggering CFS.

His traumatic story began in March 2003 when he began to feel exhausted at work.

Joe would fall asleep in his office with his head on the desk and decided he desperately needed to take a week’s holiday even though he usually had his holidays much later in the year.

He managed some heavy lifting and gardening work and felt fine but that evening he felt terrible, as though he was developing flu.

He was shaky, feverish and weak.

He struggled to keep his balance and even crawling into bed was an effort.

Joe now describes himself as being like a battery that cannot recharge.

He said: “It was just a wipe-out, like having continuous flu. Your head just feels under pressure – you can’t even do a crossword. You don’t want the radio on or the TV. It’s almost like a vegetable state, quite zombie-like. It did feel a bit like a living death.

“I went through a traumatic time and seem to have finally regained some life but I have no answers. I do not understand what happened to me. I do not understand what laid me so low. I do not understand how I was unable to recover.

“All I know for certain is how very ill I was for so long, and it seemed nothing I could do would change that.

Perhaps the only real healer is time.”

When he was diagnosed with CFS by his GP it became clear he was not well enough to go back to work and doctors provided him with notes to cover his continued absence.

After three months the pay cheques stopped coming in and problems with health insurance payouts meant he was struggling to keep up to date with bills and his mortgage.

Other symptoms were poor shortterm memory and he struggled to find words to express himself even though he was extremely emotional at times.

There was a continuous ache at the front of his head and aches also developed in his knees and elbows and cramp in his toes, feet, calves and leg tendons.

His throat was constantly sore and his headache often left him feeling physically sick. Even getting out of his pyjamas was a colossal effort.

Sufferers of CFS and its linked condition, myalgic encephalomyelitis (ME), have in the past accused others of not treating the condition seriously enough. Joe was not exposed to any of this.

He was so ill he became a virtual recluse – he wanted no one to see him in his weakened state.

Joe had the support of his wife, Pearl, who stood by his side when he was at his lowest point.

He has now managed to return to work on a part-time basis for Malvern Independents independent financial advisers, and the job is aiding his slow recovery and helping to restore his confidence.

There is support for people like Joe thanks to the Worcestershire ME Support Group which has been helping those with the condition and their families for the last 25 years.

Ian Logan, aged 61, of Martley, the chairman of the group, has not been to work since for 20 years because of the condition. He was a selfemployed engineer but the condition left him unable to work.

Ian has found the lack of support and research deeply frustrating.

Specifically people with ME/CFS want more biomedical research, more recognition and support from GPs, more care from Worcestershire Primary Care Trust and more recognition from benefits agencies.

Ian said: “It can make you suicidal.

It can cause depression. You can be so fed up with it you want to cut your throat.”

FACT FILE

WHAT IS ME?

Myalgic encephalomyelitis (ME) is characterised by a range of neurological symptoms and signs, including muscle pain and intense mental and physical exhaustion and cognitive disabilities. It is classed by the World Health Organisation as a neurological illness. The term chronic fatigue syndrome (CFS) is used more and more often.

However, experts are divided about whether it is the same condition as ME.

WHAT CAUSES ME?

Nobody knows for sure but experts say there is unlikely to be a single cause. It has been suggested that ME is triggered by infection. But other traumatic or environmental factors may be to blame.

WHO SUFFERS FROM ME/CFS?

About 150,000 people in the UK are thought to be living with the conditions. Most sufferers cannot work to full capacity and 25 per cent are severely disabled with some house-bound/bed-bound.

People of all ages and backgrounds suffer.

HOW CAN I GET HELP?

If you have any of the symptoms described the Worcestershire ME Support Group suggests you ask your GP for a referral to Dr Mark Roberts, lead clinician of the CFS/ME local multi-disciplinary team at Worcestershire Royal Hospital.

You can also contact the support group directly through co-ordinator Jill Pigott on 01905 455187 or chairman Ian Logan on 01886 888419.

There are monthly meetings in Worcester, Droitwich, Malvern, Pershore, Kidderminster and Bromsgrove where sufferers can get support and advice.]]><![CDATA[Mother arrested as 'yuppie-flu' daughter is found dead after 16 years in bed]]>
By Vanessa Allen, Colin Fernandez and Tamara Cohen

A mother who nursed her daughter for 17 years with the disease ME has been arrested on suspicion of her murder following what is believed to have been a 'mercy killing'.

Police sources revealed that Lynn Gilderdale, 31, died from a massive overdose of morphine after attempting suicide with the same drug at least twice during her battle with the debilitating condition.

Detectives arrested her mother Kay, 54, over suspicions that she helped administer the fatal dose after watching her daughter suffer since she was 14.
Lynn Gilderdale

Bedridden: Victim Lynn Gilderdale, 31, had been confined to her home for 16 years

Mrs Gilderdale, a trained nurse, was the full-time carer for her frail daughter, who had been bedridden for more than 16 years and was taking a cocktail of drugs for her condition.

Police were called to their bungalow in Stonegate, near Heathfield, East Sussex, on Thursday after the alarm was raised by Lynn's father, Mrs Gilderdale's ex-husband Richard, a former police sergeant.

Mrs Gilderdale was arrested on suspicion of murder, interviewed and released on police bail on Friday. The suspected 'mercy killing' will reignite the right-to-die debate over assisted suicide.
Kay Gilderdale returning home following her arrest for the suspected murder of her daughter Lynette

Kay Gilderdale returning home following her arrest for the suspected murder of her daughter Lynette

Yesterday she and her ex-husband released a statement on behalf of their family.

Pointedly referring to Mrs Gilderdale's 'total dedication' to her daughter, they said: 'Lynn was young, beautiful, loving and caring. At the age of 14 years she was struck down by ME - an illness greatly misunderstood - and as a result, suffered the stigma attached to this dreadful illness.

'She fought long and hard for 17 years with immense bravery, enduring constant pain and sickness.

'Every system of her body was affected. She required 24-hour care that was provided by her totally- dedicated mother, with continuous support from Lynn's father.'

They said Lynn had been active and healthy until she was 14. She had a tuberculosis immunisation in November 1991 and immediately felt unwell.

She was diagnosed with ME in May 1992 and was left bedridden by her severe condition. She had been unable to speak since August that year.

Her family said: 'Prior to her illness, which left her paralysed, unable to speak, eat or drink and until recently, no memory, she was an active healthy teenager full of life's dreams.

'She enjoyed sailing, swimming, cycling and was an accomplished musician. Her family praise and admire Lynn for her courage, which she showed to the end.

'She was a much-loved daughter, sister and granddaughter who despite her illness always gave love and support to others.
 
'Lynn's family say her death will leave a massive void in their lives - and the love she gave so unreservedly, will be missed every minute of the day.' Police were called to the £400,000 bungalow at 8.30am on Thursday. Mrs Gilderdale was arrested just after 10am.

A post-mortem examination has been carried out but police refused to reveal the cause of death pending further toxicology tests.

Chief Inspector Heather Keating said: 'This is a very tragic incident. We are not looking for anyone else in connection with it.'

A Sussex police spokesman said Mr Gilderdale, who still works for the force in a civilian role, was not suspected of any involvement in his daughter's death.

He split from his wife in 2002. The couple, who also have a son, Steven, said their divorce had not been caused by their daughter's illness.

Mr Gilderdale still lives nearby and is said to have visited his daughter daily and to have helped with her day-to-day care.

He was with his Irish-born ex-wife at the family home yesterday, where she was being comforted by her sister.

Mrs Gilderdale has been a prominent campaigner over the illness which struck down her daughter.

The family statement added: 'In life, Lynn strove to help the medical profession improve their insight into ME which affects thousands of people, in varying degrees of severity.

'Her dedicated mother, supported by Lynn's family, has pledged to achieve her ultimate goal - for better understanding and recognition of this life-destroying illness.'

THE AGONISING TRUTH ABOUT 'YUPPIE FLU'

ME affects up to 250,000 sufferers in Britain. Although it was first documented in the 1930s, it was not officially recognised by the Government's medical advisers until 2002.

Until then victims of myalgic encephalomyelitis were often dismissed as having 'yuppie flu', as its symptoms were considered particularly common among overworked middle-class professionals.

Common symptoms include severe fatigue, painful muscles and joints, insomnia, gastric disorders and poor memory and concentration. There is currently no test or cure and doctors are able to diagnose it only after ruling out other possible causes, including flu, diabetes and depression.

The condition usually develops during the early twenties to mid-forties although children can also be affected, most probably between the ages of 13 and 15. Women account for up to three-quarters of all cases.

Prior to her illness: Lynn at the age of 12, completing her homework. She enjoyed a normal childhood before being struck down

Prior to her illness: Lynn at the age of 12, completing her homework. She enjoyed a normal childhood before being struck down

Sufferers include the athlete Dame Kelly Holmes, who was struck down in 2001 but recovered and went on to win double gold at the 2004 Olympics in Athens.

Scientists believe it could be carried in the genes, or be set off by a 'trigger' including bacterial illness, a viral infection such as glandular fever, stress, depression or a reaction to a traumatic event, such as bereavement or redundancy.

Some sufferers recover fully within two years and the majority learn to manage their condition with anti-depressants and painkillers and through avoiding stress, monitoring their energy levels and taking gentle exercise.

But around a quarter go on to develop severe ME lasting for years or even decades, often leaving them completely housebound and totally reliant on carers.

In his 2002 report the Chief Medical Officer, Liam Donaldson, said ME 'should be classified as a chronic condition with long-term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease.']]><![CDATA[Re: Are we any nearer to finding a cure for ME?]]>http://express.co.uk

by Antoinette Christie

I found Dr. Leonard's recent comments and advice on ME (Are we any nearer to finding a cure for ME?, Daily Express, 23 September 2008) very poor and misleading.

The two most worrying things are that she says M.E. is often associated with depression and she says it is believed that graded exercise helps>

Fact ME is not often associated with depression.

Fact Antidepressants have proven to have an adverse effect on ME patients.

Fact Graded exercise Therapy (GET) has been proven over and over again to make ME patients Worse.

Might it be a good idea for once to actually listen to the patients who actually have the illness?

I am disgusted that ME sufferers have become invisible, not able fit to fight for recognition for M.E. There is not ONE doctor here with an interest or educated knowledge of ME, Who will educate these GP'S and Consultants?

In answer to Are We ANY NEARER TO FINDING A CURE? believe it or not the answer is NO as our Government still refuse to FUND BIO MEDICAL RESEARCH.

Funding for Bio Medical Research has been completely left up to ME sufferers families and charities. WHY?

Antoinette Christie
Mother of 15yr old ME Sufferer/
Fundraiser for ME Research
Belfast
Northern Ireland
familyfights4me]]><![CDATA[4th XMRV Study Fails to Confirm Association with CFS]]>http://www.cfids.org

Another negative study of XMRV in CFS

A study published on Feb. 25, 2010, in the British Medical Journal by
Frank van Kuppeveld, et al, of the Netherlands did not find evidence of
xenotropic murine leukaemia virus-related virus (XMRV) in 32 patients
with CFS and 43 matched controls. This study used blood samples
collected in 1991-1992 from CFS patients defined by the Oxford
criteria. None of the cases or controls tested positive by sensitive
polymerase chain reaction (PCR).

The Association's scientific director, Suzanne D. Vernon, PhD, has
written an analysis of this study and provided some context for the
three negative reports of XMRV that have been published in the last 51
days. Please read "Playing A Weak Hand Well" at
http://www.cfids.org/xmrv/022510study.asp.

We have updated our XMRV resource page at
http://www.cfids.org/xmrv/default.asp#info and will provide additional
information about the XMRV reports in February, as well as other news,
in the March edition of CFIDSLink. Sign up here
http://www.cfids.org/development/checkemail.aspx or join us on Facebook
(www.facebook.com/cfidsassn) to keep up with the latest developments.
]]><![CDATA[Cognitive behaviour therapy recommended]]>www.iomtoday.co.im

Cognitive behavioural therapy is one of the few evidenced based therapies available and is clearly the preferred choice by GPs and psychologists these days.

It is also highly regarded by the National Institute of Clinical Excellence (NICE) because it is evidence based, this means it is not hocus pocus and is based on thorough and reliable research where it has been tested against other approaches under controlled conditions and proven to be the best method.

It is led by clear protocols and plans for patients and these can not be altered according to what the therapist likes to do.

There are now clear protocols for a range of treatments, depression, anxiety, worrying and stress, obsessive compulsive disorder, along with chronic pain management and Chronic Fatigue Syndrome (CFS).

But there is often a popular misunderstanding about being sent for psychological assistance, suggesting that the problem is psychological. ME and CFS are not psychological problems, they are physical illnesses.

But psychology input may help cope with the ME and CFS. As with many other chronic health problems, such as diabetes, cardiac infarction and stroke, and forms of cancer coping with these diseases can be very difficult for the person and their family.

There are some important strategies that have been developed by psychologists to help people cope better with a change of their health and life circumstances such as losing mobility or becoming incontinent can stop people enjoying their life and going out.

Neither doctors nor psychologists who work with health-related problems believe the problem is psychological but they know the stronger their patients are mentally, and the more resilient they are psychologically, the better they cope. It is for these reasons patients are sent to see psychologists.

This is very important when I see chronic pain patients who are having to live with ongoing and severe pain due to damage to their limbs or spine. This actual pain can not be seen, but the agony the patient is in is obvious and sometimes analgesics do not work.

I often have to spend considerable time explaining to my patients that they have been sent to see a clinical psychologist not because the doctors think they are imagining the pain, but because I can show them strategies to cope better with the pain and assist them change some of their attributions and cognitions associated with the pain.

With the current research available today, no one believes that CFS or ME is a psychological condition but psychology may help the person manage the chronic problem better.

For further information on Cognitive Behavioural Therapy and self help please go to  www.cbtwellbeing.com

Dr Helen Nightingale
Consultant Clinical psychologist
The Psychology Private Clinic
70 Derby Square
Douglas
IM1 3RL]]><![CDATA[Re: Jane's Flash Recovery]]>
Anyone with a knowledge of M.E. and reading Jane Flowers story (Jane's Flash Recovery, YOU Magazine in the Mail on Sunday, 22 February 2009), would have been hard pressed to accept that this serious neurological disease, was ever an adequate or likely explanation for her collapse.

Starting with the post-natal depression, Mrs Flowers seemed to fall into a spiral of a slow burnout, with her exhaustion and anxiety being the main problems.

That isn't Myalgic Encephalomyelitis. M.E.is an acute illness that often occurred in epidemics of previous well and healthy adults. The patient usually presents with marked immunological and neurological abnormalities.

Mrs Flowers didn't present like that and she should never have assumed (or even been encouraged) to believe that she had the disease.

It's not enough to say that a doctor, "said that she had ME". There are very few doctors left in the UK who can diagnose Myalgic Encephalomyelitis. It's become common for it to be called "CFS" but patients and doctors don't think that this is always accurate.

What probably happened is that a doctor told Mrs Flowers that she had "chronic fatigue" (and by that the doctor could have meant a psychological condition) and then somewhere along the line, Mrs Flowers (or someone) decided that M.E. was the same. It's not.

The reason I suspect this scenario that your article included no neurological and immunological tests to confirm her condition. If she had them you would have shown the current results to prove that she recovered.

Was Mrs Flowers misdiagnosed and, if so, why isn't that made clear in the article?

There is a story here but you did not cover it.

Yes, it can be difficult and expensive to get the correct tests but are you really suggesting that someone would find the money for an unproven psychological treatment instead of these?

These "recovery" stories need to be plausible and you do a disservice to the M.E. patient group when they are not.

If you were to run a similar feature on a person with Multiple Sclerosis I would expect to read about the state of their myelination before and after Lightning Therapy. People with ME deserve no less.

Simply expecting that we will take someone's "word for it", is not enough.

There is a story here but you did not cover it.

Yours faithfully
Annette Barclay
London]]><![CDATA[Re: Jane's Flash Recovery]]> YOU Magazine in the Mail on Sunday

The scenario of Jane Flowers discovering the Lightning Process and recovering from M.E. (Jane's Flash Recovery, YOU Magazine in the Mail on Sunday, 22 February 2009) is remarkably similar to many other stories which have appeared in provincial newspapers all over the country: the subject of the piece has been diagnosed with M.E., often very severely for years; they have tried everything without success; then they happened to hear of the Lightning Process; they were sceptical at first but, feeling they had nothing to lose, they tried the three-day course and were surprised and delighted to find it worked. Some have now trained to offer it to others.

There often follows a, by now, familiar exchange of correspondence.

A number of letters are published in response: the Lightning Process is a procedure which cannot be properly explained, has no independent scientific evidence to support it, is not recognised by any medical authority, is practised by a heterogeneous group of people with no qualification, to do it, recognised outside its own arcane and secretive organisation. Phil Parker objects to the term 'pyramid selling' but it is traded in layers with trainees buying the training and franchise to practise for a fee and paying a cut to the Lightning Process's designer. It is hard-sold on their own website, YouTube, and endorsed by celebrities, never cross-examined about their claims for its success, unbalanced by any views to the contrary and with never an opportunity to do so. It is expensive, especially for M.E. sufferers dependent on disability benefits. The most common fee quoted is £580 but we have heard of people paying more than twice this for return visits after the usual three days. Most worryingly, the Lightning Process relies on people who have been chronically ill for decades suspending their critical faculties and taking it because everything else has failed them. The harsh reality is that the Lightning Process is also providing hopes which are rarely realised.

The writers of these letters are frequently contacted by Vikki Rimmer, who handles the PR for the Lightning Process and often by a relative of the subject of the piece and a Lightning Process trainer. They say that the subject has been hurt and distressed; they may try to get contact details of the other writers; they would like to have "positive dialogue", correct any "misrepresentations" you have and sometimes it is suggested there could be grounds for legal action. This can deter people from writing again, thus distorting the balance of opinion published.

Latterly, in an attempt to have the last word, there have been orchestrated promotions, in local newspapers, with a handful of letters, from the PR machine, trainers and patients-turned-trainers repeating recommendation of the Lightning Process for M.E. sufferers but without any evidence to support what they say. And the process is repeated with more free advertising in every part of the UK.

To break this vicious circle of claim and counter-claim, based on assertion rather than any hard scientific facts, ME Free For All. org has decided to test the efficacy of the Lightning Process on M.E. sufferers with more rigorous scientific scrutiny than it has ever had, using conventionally accepted procedures (such as a double blind trial, with neither experimenter, nor practitioner, knowing which of a reasonably large sample size, say 100, are the test subjects) that would be needed to persuade the Editor of an academic journal to accept our findings for publication.

In anticipation of the possible charge that this Research Psychologist and M.E. sufferer of 21 years might not be scrupulously objective, we are inviting advocates and practitioners of the Lightning Process, in particular, but also anyone else with an interest in the outcome, to preview and agree our experimental design and diagnostic criteria of M.E. subjects before we go ahead; to have the work conducted by an agreed independent third party and, in accordance with our "goldfish bowl" policy, to have the whole programme clearly transparent to all and reported in a newspaper. It would be fitting that the Mail on Sunday is the first to be invited to do this if they wish. The purpose would be to have no quibbling about the results on the basis of experimental design flaws or statistical bias and to provide a solid basis for making a decision about having the Lightning Process for M.E. sufferers.

If, after the Lightning Process, there is no significant improvement in measurable variables such as return to work or education and a resumption of some degree of previous social life, we would expect M.E. to be removed from the list of illnesses on the Lightning Process website and in all advertising. If, on the other hand, there is anything approaching the 85% success rate claimed for these same measurable variables and if the improvement is sustained, without relapse, in regular follow-up studies at six-monthly intervals, we shall suggest that doctors' associations seriously consider the Lightning Process as a treatment for M.E. and recommend that it become more freely available on the NHS.

Accordingly, I have copied this letter to Phil Parker, the Inventor of the Lightning Process; Vikki Rimmer, PR for the Lightning Process; Angela Neustatter, the journalist of this article; everyone mentioned in it: Jane Flowers, the subject; Charlotte Farrant, the practioner and Esther Rantzen & Austin Healey, the celebrity endorsers; Sue Peart, the Editor of YOU Magazine; Peter Wright, the Editor of the Mail on Sunday; Rachel Ellis, Health Correspondent of the Mail on Sunday. In addition, I have sent it to all M.E. contacts, registered charities, and online organistaions. Anyone may forward this to anyone with an interest (or any I have tried and may have failed to reach). Simultaneously, we would like to hear from anyone who would like to join us in this research project (which may lead to others) as part of the experimental design team (knowledge of design and analysis useful); patients to take part in the research; anyone planning to have the Lightning Process anyway and anyone who has already had it (whether with a favourable or unfavourable outcome or experience). We guarantee confidentiality and can promise anonymity if they feel the need to ask). We may forward to other national newspapers especially if the Mail on Sunday declines our invitation and, perhaps, to provincial newspapers, who may have a local interest in following participants who live in their area.

We hope this project receives the level of interest it deserves for all concerned, since it seems the fairest way to determine whether people with M.E. should take the Lightning Process or not.

Yours sincerely
Dr John H Greensmith
ME Free For All. org]]><![CDATA[Re: I want to get better, more research is needed]]>www.highbeam.com/Bristol+Evening+Post

by Dr John H Greensmith

The headline chosen for Vicki Mathias's article about teenage M.E. sufferer, Helen Wood, (I want to get better, more research is needed, Bristol Evening Post, 28 May 2009) could be a one-fits-all for M.E. sufferers. They couldn't have a much better one. Unfortunately, the treatment offered is also a one-fits-all but which couldn't be much worse, since it is either ineffective or makes matters worse but which, although every M.E. organisation has branded it, to some degree, "unfit for purpose", is still recommended.

The willingness of M.E. (Myalgic Encephalomyelitis) sufferers, like Helen, to share their experiences makes a valuable contribution to our understanding of this baffling, complex, neurological illness which we need because sufferers do not all start or progress in the same way. It looks as though Helen started with Glandular Fever (Epstein-Barr virus), as a huge majority of M.E. sufferers do but we mustn't be too quick to jump to conclusions about the cause of M.E. because some appear to have a different origin, perhaps pneumonia, shingles (Herpes), or some other viral infection; or it may have been after a vaccination, like TB, or Hepatitis; or it may have been some toxicity in the environment such as chemicals for crop spraying. And, of course, many get over Glandular Fever, or these other things, with no further problems. This is why biomedical research is so essential to understand the pathogenesis of M.E.

As well as improving knowledge about and public perception of M.E., it is essential to jettison some myths, once and for all, which are hampering progress towards a cure. That old chestnut 'Yuppie flu" is dismissive, as well as inaccurate and must go. M.E. affects both sexes, all age groups and social classes all over the world. Other myths that need dispelling are that M.E. is a psychiatric illness, attention-seeking, laziness or just a bit of tiredness.

M.E. is a discrete neurological illness, named in the 1950s, recognised by the world Health Organisation in 1969, for which there is an abundance of evidence to justify its name today. There is, as yet, no cure. The best medical attention any M.E, sufferer can have is the support of a good GP for symptom relief, such as pain or difficulty sleeping or whatever you have. There is no evidence that anything else -- orthodox, complementary or radical -- works. Cognitive Behaviour Therapy (CBT) has no enduring benefit for people with M.E.; Graded Exercise Treatment (GET) makes a majority worse, sometimes irrecoverably so and you'd be better to keep your money in your pocket than invest in any of the others. The best agreed common sense plan is pacing, which is really doing as much as you can manage without overdoing things and then resting or sleeping as required. But it does require some discipline to stop when you know you should.

I do believe that it is only a matter of time before we get a definitive diagnostic test for M.E. - maybe a blood test or a scan - just as they did for illnesses like MS, which were once written off or dumped in the psychiatrists' dustbin but it's never going to be soon enough for those people whose lives have been devastated by this extremely disabling neurological illness, which is so much more than mere tiredness and needs to be recognised as such.

Yours sincerely
Dr John H Greensmith
ME Free For All. org ]]><![CDATA[Feedback to 'What is chronic fatigue syndrome or ME?' article]]>
Anna Gregorowski paints too rosy a view of the way that the understanding and treatment of M.E. (Myalgic Encephalomyelitis) is going (What is chronic fatigue syndrome or ME?, The Times, 14 September 2007), when much of what she says is far from universally accepted, highly contentious, lacks scientific credibility to support it, being based on highly selective evidence, whether by ignorance or deliberate misrepresentation and perpetuates myths, which keep nationally uncoordinated multidisciplinary teams in work and thousands of M.E. sufferers in pain and distress.

The reason that it may be erroneously posited that M.E. is "more common than many realise" is because of the false premise that M.E. = Chronic Fatigue Syndrome.

The number of sufferers is artificially inflated by bundling the discrete neurological illness M.E. in with all other illnesses having chronic fatigue as a principal symptom, under the catch-all CFS and then treating CFS as synonymous and interchangeable with M.E.

This leap of logic may account for the massive range in the Department of Health's estimate of CFS/ME (terms now welded together) as between 0.02 and 0.04% of the population or 120,000 - 240,000.

It is obviously much too great a tolerance gap; for example, in answer to the question how many people attended a football match, you may tolerate a couple of thousand either way but surely not say between 30,000 - 60,000.

It's most likely that the number of people with M.E. is at the lower end of the scale. The key word is "fatigue". Whatever M.E. is, it is not tiredness as we normally understand it, being brought on by physical or mental effort. It is an overwhelming lethargy that is omnipresent for no such expenditure of energy. Nor is it repaired by any number of hours of sleep.

In addition, there is an extraordinarily long period required to recover from the effects of the slightest exertion ("post-exertional malaise") and there is a range of symptoms - including muscle pain, cognitive dysfunction and dizziness - that the word "fatigue" alone does not cover.

Chronic fatigue and M.E. are different; until they are separated, the search for a physical cause for M.E. will be hampered and any findings distorted by the inclusion of people who do have some illness but not M.E.

Did Anna Gregorowski really say, "What we do know is that looking for a cause .... is not useful"? Without the knowledge of a physical cause, of any illness, any treatments offered must carry some potential risks if the grounds upon which they are recommended are disputed.

This is exactly what is happening here, either in blissful ignorance, or with deliberate misrepresentation. It is perhaps not surprising that the NICE (National Institute for Health and Clinical Excellence) guidelines for the treatment of M.E., published last month, recommend continuing with the same two management techniques - Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET) - when the Guideline Development Group was dominated by therapists (often known as "clinical champions"), favouring a psychiatric model, who had suggested them in the first place, despite being warned of their being based on highly selective, flawed, research of questionable validity and continue to use them, despite serious concerns about harmful effects on patients.

It is also very worrying that one of the three patient representatives on the panel felt compelled to resign because she was unable to agree with the content of the guidelines (but not allowed to say so until after publication because of a confidentiality clause) and the other two have subsequently admitted they were not totally happy with what they had signed up to.

Two new studies, in Japan (Kazuhiro et al, July 2007) and the US (Enlander, September 2007) have supported earlier findings that M.E. sufferers are worse after Graded Exercise Treatment (GET). Anna Gregorowski doesn't tell us what is the number, or what proportion of M.E. sufferers she means when she says that "most" young people on a rehabilitation programme recover within 12 to 24 months and do return to normal life.

It certainly doesn't include those severely affected sufferers, represented by the 25% Group, who are bedridden, paralysed, can't speak, are tube-fed and need 24-hour care, year after year. There are some crucial hidden statistics, which remain concealed or unconsidered, again either by ignorance or design; for example, the massive drop out rate from treatment, often well above 50%, may not be included in the analysis, rather than counted as failures; the relapses, after some time and the lack of follow-up studies, perhaps because patients are now too ill, or fear being recalled for further treatment.

There is even some bias in recommending which support organisation young M.E. sufferers should join rather than another. For example, AYME, the one recommended here, is generally more favourable towards and supportive of, the NICE guidelines. The other, The Young M.E. Sufferers Trust (Tel: 0845 003 9002), has quite different views and was not mentioned.

The most worrying matter is that not a single therapist, administering these treatments, has ever been prepared to guarantee, or at least say with a good degree of probability, that no patient will ever come to any harm, or become wheelchair bound or bedridden, after having had Graded Exercise Treatment.

I should say that there are researchers in M.E., who do apply the principles of good scientific practice, absent here but they are not getting any slice of the MRC (Medical research Council) funding, for biomedical research, to make the necessary breakthrough.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org]]><![CDATA[Are we any nearer to finding a cure for ME?]]>http://express.co.uk

by Dr Rosemary Leonard

A close family friend has been recently diagnosed with ME.

Before succumbing to this debilitating illness she held down a responsible job and enjoyed an active social life. Can you tell me if any progress has been made towards finding a cure?

Unfortunately, the cause of Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome, is still not known and this has made progress with effective treatment difficult.

It is thought to affect around four people in every 1,000. As well as causing persistent, severe fatigue it can cause muscle and joint pains, disturbed sleep, flu-like symptoms, dizziness, nausea and difficulty with concentrating and impaired memory.

Many sufferers also have an intermittent sore throat, swollen lymph glands and sometimes palpitations.

However, symptoms can vary between different people and what works for one sufferer won’t necessarily help another so it is important that treatment is geared to the individual.

It does seem that graded exercise therapy is often very beneficial. Activity management is also important – which means being active but not pushing yourself too hard.

Resting for long periods is not recommended but experts also feel that an imposed schedule of activity and rest is unlikely to help either.

There is no evidence that taking any supplements is effective – eating a healthy, well-balanced diet with plenty of fresh fruit and veg is far more important.

Depression is a common feature of ME and some patients do benefit from taking antidepressants. They can also help with disturbed sleep. You can get more useful information from the Royal College of Psychiatrists, which has published a detailed information leaflet about the condition.

 ©2008 Northern and Shell Media Publications
]]><![CDATA[Illness causes mum to take her life]]>http://www.bromsgrovestandard.co.uk/

by Lucy Thomson

A BARNT Green woman travelled to Switzerland to end her own life using the assisted suicide method which is legal over there, an inquest heard.
Nicola Caroline McNougher, 43, was diagnosed with Myalgic Encephalopathy (ME) after suffering a number of other debilitating illnesses which caused her severe and chronic pain, said Worcestershire Coroner Geraint Williams.

After choosing to end her own life, Mrs McNougher, who had two teenage sons aged 13 and 15, contacted Dignitas, a Zurich-based assisted suicide organisation and flew to Switzerland where she took an overdose of the sedative barbiturate. In Switzerland, prosecutions for assisted suicide can only be taken if the person is acting out of 'self interest'.

Mrs McNougher originally told her husband, from whom she was separated, that she wanted him to accompany her to Switzerland to see a doctor about further treatment and the couple flew to Zurich on May 24.

In a statement read aloud by Mr Williams, her husband, Mr McNougher, told the court how on May 25, his wife had told him the real reason she wanted to travel abroad. He said she undertook two consultations with nurses to determine her state of mind.

Then on May 28, the couple travelled to a Dignitas room where, in front of a video camera, Mrs McNougher drank 15 grammes of liquid barbiturate, which is no longer prescribed in the UK. She fell asleep at 1.37pm and was confirmed
dead at 2pm.

In the statement, Mr McNougher said he tried to persuade his wife that there were other options, but she could not be deterred.

In an unusual move, Mr Williams also read a statement prepared by Mrs McNougher which declared she was living 'an inhuman existence' and stated that she 'simply do not wish to exist'.

She said although she felt sad her children had lost their mother, she was glad they could now 'live as children.'

Mrs McNougher also stressed she did not want the blame to rest with Dignitas, which had been 'thorough and professional'.

"It should not be criticised, especially by those who do not have this disease.

"The focus should be on conducting proper medical research," said the statement by Mrs McNougher, who also revealed she was donating tissue for ME research.

Closing the inquest, Mr Williams expressed his condolences to Mr McNougher and his sons before recording a verdict that Mrs McNougher took her own life.]]><![CDATA[NICE to see]]>
The Bedworth Tribune Action for ME strongly recommends that readers who have ME, their families, carers, GPs and other other healthcare professionals get their hands on a copy of the new guideline on ME (myalgic encephalomyelitis/encephalopothy), or chronic fatigue syndrome,which has been published by the National Institute for Clinical Excellence (NICE).

It's not perfect but here at last is an official guideline which recognises the reality of illness and its symptoms, advocates individual management plans for care and treatment and emphasises between healthcare professionals and patients their families and carers.

Copies may be downloaded free from www.nice.org.uk/CG053 .

Through contacts with patients, Action for ME will monitor rigorously the implementation of the guideline.

Sir Peter Spencer,
Chief Executive Action for ME
Canningford House
38 Victoria Street
Bristol]]><![CDATA[Feedback to "'Yuppie flu' is finally being taken seriously" article]]>
In Sussex Argus - www.theargus.co.uk

By Dr John H Greensmith

There is likely to be a very big difference between what is said in the NICE (National Institute for Health and Clinical Excellence) guidelines for the treatment of M.E. (Myalgic Encephalomyelitis) and what will actually be done in practice for M.E. sufferers.

Doctors who didn't believe it before will still treat M.E. no more seriously than fatigue, or think it is 'all in the mind' until they have evidence of a physical cause.

They won't get that until there is properly funded biomedical research.

That won't happen while the millions of pounds of research funds are all going to pay for two management techniques, one of which, Cognitive Behaviour Therapy (CBT) does no lasting good for people with M.E. and the other, Graded Exercise Treatment (GET) does lasting, irreversible, harm for some.

Contrary to advice, some GPs are still recommending dangerous unsupervised exercise, or to go to the gym and, although patients should be equal partners in the process and be able to refuse treatment or call a halt if they feel uncomfortable or worse, they won't, in practice, challenge the authority of the therapist.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org]]><![CDATA[Re: When illness is mostly in the mind]]>
So, according to this government advisor, people who are diagnosed with Chronic Fatigue Syndrome, have 'abnormal illness beliefs' (When illness is mostly in the mind, New Scientist, 11 March 2009).

First, it would be useful to differentiate here: what does he mean by Chronic Fatigue Syndrome? Does he refer to chronic fatigue (a symptom of a number of diseases), Post Viral Fatigue Syndrome, Myalgic Encephalomyelitis or, to use the National Institue for Clinical Excellence's criteria for diagnosing what they are calling 'CFS/ME, someone with fatigue and one other symptom which persists for more than six months and is difficult to find cause for, or the Canadian Definition of ME/CFS or someone who has been misdiagnosed with CFS/ME and is later found to be suffering from illnesses such as Celiac Disease but is also stuck with the diagnosis of CFS/ME.

Or, which I feel is more likely, is he just referring to his own patients who seem to be suffering from a form of depression?

I have attended several international biomedical research conferences about this cluster of illnesses and thoroughly recommend them.

Jill Cooper
Rugby]]><![CDATA[Sense and Sensitivity]]>
Interaction magazine - Issue 59 (March 2007)

Action for M.E - www.afme.org.uk

"One of the many symptoms of M.E. is increased sensitivity to noise and bright light," says Action for M.E. member and former consultant psychologist and researcher, Dr Jenny Watts.  "When I experienced these sensitivities, I set out to investigate their effect on everyday life and see what help is available. "

Gone are the days when I've come home after a late night disco and kicked off my shoes. With the onset of M.E. 14 years ago my lifestyle has changed. I used to love bright revolving spot lights and pulsating music. Now people playing their ipod on full volume and folk in cars pounding with the latest CD are my sworn enemies.
After being bombarded by checkout scanner bongs in supermarkets, deafened by piped music at superstores and irritated by a cacophony of ring tones on mobile phones in pedestrian areas, you'd think that home would be a quiet haven. Not so.

Five years ago, I had a new neighbour. DIY started immediately, followed by a prolonged loft conversion and recently, guitar playing. Then the property on the other side was sold. For the next two years, the new owner extended the kitchen, did yet more DIY and disturbed me with very loud rap music.

My M.E. got considerably worse. I felt nauseous, shaky, got severe headaches and tinnitus. I couldn't sleep or keep to a pacing routine of writing, rest periods and time out. Even though I talked to the neighbours about M.E. the noise continued. I took action and got support from a mediation organisation.

The local authority environmental health department logged all noise nuisances and advised on acceptable times for doing building work and DIY. The police recorded all noise and followed up with visits to the neighbours. The Citizens' Advice Bureau wrote to the local authority directorate about the nuisance and concern for my health. My MP also offered to intervene. An ASBO was served and warning letters were sent to the neighbours.

Now my house is quieter as the police and local authority continue to monitor any breaches.   Acoustic trauma Members who contacted me via Action for M.E., by-mail and post, report that noise is a major problem.

Gail developed severe noise sensitivity when she was living in a maisonette. "A very deaf elderly lady upstairs had a TV/radio blaring through most of the day: from 6am to midnight," she explains. "The young man next door got home at 1 am, put his radio on, sang along, often collapsed and left it playing all night. On occasions he would do some DIY in the middle of the night."

She says that the lack of sleep and constant exposure to noise has damaged her hearing. "My brain seems to have been rewired to hear noises as being much louder than they are."

Kay writes that she's very sensitive to any noise and hears sounds that others hardly notice e.g. the hum from electrical appliances, gadgets, radio, CD player and central heating. When she plays scrabble the rattling of the tiles in their bag grates on her.

Rose is the same. She can't bear a newspaper or book pages being turned by someone in another room. "The noise seems to enter my body and reverberate in my skull." On a self-catering holiday, she had to ask her husband to sit in the bathroom to read. "If I'm having a bad day, I can only speak in a very low voice as it echoes in my head."

Intolerance indicators
For Mary, noise intolerance is one of the most accurate indicators of her state of health. She can only listen to music when she is well. "When I start having to ask people to speak more quietly then I know that I need to rest." She avoids going to pubs or clubs and visits quiet cafes with friends; seeing them one-to-one, so that she doesn't get tired.

Other members report that crowded staffrooms, open plan offices, loud traffic, church singing, some male voices and children playing cause tiredness and noise sensitivity. Monotonous news announcers and even just watching TV make some of them head for the mute button.

Jane says, "I've had noise sensitivity since a viral infection triggered M.E. The first things I noticed that made me want to scream were slammed doors and babies crying. I've since had problems staying in the same room where there are several people and more than one conversation is going at the same time. My brain can't cope with anything other than minimal audio input. "

Effects of medication
Some people with tinnitus have taken Xanax and report that there's been an improvement with noise sensitivity, although they sleep more. Others have found that Valium, valerian herbal tablets and GABA from the USA have helped them cope with noise.

Sarah, who has auditory nerve sensitivity and tinnitus, found Rivatril "dampened down the autonomic nervous system."

However, members who have taken Sertraline (Lustral), say that for them, their sensitivity to noise got worse before they noticed any improvement.

Pat says that when she was taking it, any sound caused her to shut down completely. She describes when her brother was playing the organ in the next room. "I was standing in the middle of the kitchen and the noise affected me so much, it was all I could do to take one step to the kitchen counter, where I held on.

I was shaking and my brain had closed down to the extent that I could only speak in monosyllables." She had to ask her mother to tell her brother to stop playing. When he did, she could think clearly and stand unaided again.    

Block it out!
Many people with noise sensitivity use masking aids. Wax earplugs mould to fit in the ear cavity and block out almost all noise. Foam or rubber ones are lighter and allow conversations but aren't effective enough for many people.

However, some GPs don't advise the wearing of earplugs because they can cause infections, especially if they're worn for any length of time.

Ear defenders, which are used by pneumatic drill operators, block out 95% of noise but they're very bulky to wear and can't be used when resting.

People who contacted me say that after a short time they start to squeeze the head causing a headache. They prefer noise-cancelling headphones because they can be combined with earplugs, which have a jack inside to take an earphone.

Music can be played on an ipod to mask unwanted noise. Recordings of white noise or the sounds of a stream or rain were all suggested.

To completely block out noise, a room needs soundproofing. The materials give a noise reduction of up to 61 decibels and are 9cm thick but can only be used in walls not close to adjacent windows.    

Beth had great difficulty reading because the contrast of black and white was too disturbing. "All the words seemed to jump off the page at once and I couldn't focus on the phrase I was trying to read." She couldn't use her PC or watch TV. Overcast days were more difficult to tolerate than sunny ones.

At an appointment at the Institute of Optometry, London, she had a thorough eye health examination and colorimetry test. As a result, she was prescribed two pairs of blue-tinted glasses. One pair for general wear/watching TV, the other with prisms for reading/working on her PC. The glasses have made a big improvement with her vision.

Other visual problems are associated with rapidly changing scenes and alternating light and shade. Linda says that when she's driving and the sun is low behind trees lining the road, she has to look away briefly. "The problem occurs on a tightly curved entrance to and from a motorway where there are medium-sized trees close to the road. They seem to whizz by." She's noticed a similar problem when she's watching TV and there are car chases or rapid scene changes in the adverts.

Other members say that they can't cope with the flashy brightness of TV. They prefer desk PCs to laptops because they are easier on their eyes and they can sit further away. Several can't bear the glare of table lamps in restaurants and shut their eyes when there is strobe lighting in theatres.

Shields and shades
Wearing a brimmed hat or baseball cap, both indoors and outside, can help. Wraparound sunglasses cut out light, especially at the sides and they can be worn with prescription glasses. Glare shields have a similar effect.

 Some members prefer blindfolds and eye masks to shield their eyes. Others feel that silk, moulded and padded eye masks aren't as effective as the gel ones. These can be put in the fridge between uses and are practical when travelling. Cold flannels draped over the eyes and eye pillows are useful for rest periods.

In the home, low wattage and, coloured light bulbs reduce glare and are easier on the eyes. Direct light can be reduced by fitting dimmer switches and dispersed by using up-lighter lights. Dawn simulator lamps may help you to acclimatise to light on waking as they come on gradually over two hours.

Members with severe light sensitivity have installed window film, blackout curtain lining, blackout blinds or complete blackout systems, to reduce the amount of light in a room or make it pitch black.

For many people with M.E., sensitivity to noise and light restricts and isolates them. At home they have to wear earplugs, limit visitors and cut out or reduce light. This often causes domestic friction.

In public they risk comment, even ridicule, if they're out wearing a hat and sunglasses on a dull day. Those who are able to have a holiday, request a quiet bedroom, go equipped with aids and take blackout material. When the sensitivities are very severe, they are housebound.

Like other members, I now enjoy my peace and quiet. No more discos. For me, a night in, reading a good book or quality time working on an article is a little piece of heaven here on earth.

Susan White, now recovering from M.E., talks about her experiences with light and noise sensitivity

My sensitivity to sound began a long time before I got M.E., at age 11, when I started to get insomnia and polycystic ovary syndrome.

The sound sensitivity worsened with the onset of M.E. Fourteen years ago and I had to resort to using wax ear plugs to get to sleep and stay asleep, otherwise the slightest noise would wake me.

During a particularly bad relapse when I was bed bound, even the sound of my three-month-old baby's breathing was almost unbearable. It felt as if it was a knife cutting through my brain.

Light sensitivity became a real problem too with the start of M.E. Watching TV or looking at a computer  screen was sometimes impossible. I used to have to wear sunglasses when outdoors and during one bad relapse I had to lie in a dark room for several days.

Even now in recovery, I often wear a pair of ear defenders when noise around the home is a problem. I have to limit screen watching to an hour maximum a day otherwise I have tired, aching eyes that are more sensitive the next day.

Something I have noticed worsen over the years is that bright lights at night, e.g. from street lamps or cars, appear to 'bleed' towards the edge of my vision. I still find sitting in a room and looking at the daylight through a window tiring.

My main advice is to withdraw yourself in whatever way you can from the source of the problem, either by going somewhere else, putting in ear plugs or doing what you can to change the situation.  

About the author Author
Dr Jenny Watts was one of the people photographed by Sunday Times and Life photographer Terry O'Neill to feature in our 2006 campaign.

Jenny collapsed across her desk at work in 1992 and was diagnosed with M.E. the following year. At the time, she was a consultant psychologist and principal research officer and head of assessment and evaluation in a local authority.

Contacts and resources

Noise sensitivity
The British Tinnitus Association, Ground Floor, Unit 5, Acorn Business Park, Woodseats Close Sheffield S8 OTB. Tel: 01142509922.
Freephone: 0800 018 0527.
E-mail: info@tinnitus.org.uk .
www.tinnitus.org.uk

Earplugs
A pack of five Muffles wax earplugs are available from Boots for around £1.99*. www.boots.com

Hearos Earplugs (from the USA and Canada) are available online.
www.hearos.com/products-02427.htm .
 
See also www.earplugstore.com .

Made to measure earplugs can be obtained from hearing aid shops and cost approx: £35/£40* .

Ear defenders
Buy from builders' merchants/Wickes for £9.99*. www.wickes.co.uk

Noise cancelling headphones
Can be purchased from Bose. Freephone: 0800 085 9021. www.bose.co.uk

Soundproofing
Various types are available from NoiseStop Systems. Tel: 08451 306269.
E-mail: info@noisestopsystems.co.uk. www.noisestopsystems.co.uk .

The cost of materials ranges from £18.70 to £33.85* per sq metre, plus accessories (sound-breaker bars etc), VAT, delivery etc.

The cost of floor soundproofing is from £22.57 to £43.38* per sq metre, plus VAT and delivery.
For all systems, installation is extra.

Light sensitivity
The Institute of Optometry, 56-62 Newington Causeway, London SE1 6DS. Tel: 020 7407 4183.
E-mail: admin@ioo.org.uk .
www.ioo.org.uk.

For private eye health examination and coladmin@ioo.org.uk
admin@ioo.org.uk
Orimetry test: NHS exemption if on means-tested benefits.

Wraparound Sunglasses
Available from Home Free and cost approx: £10*.
Tel: 0870 908 7050.

Blindfolds
Buy from Superdrug and other chemists. Eye masks Mojo eye masks cost £31.50* (Jet Set Eye Mask)

Dimmer switches
Available from Wickes/DIY superstores and cost £6.89/£19.99* each.

Blackout systems and window film
ACS Window Treatments, 73 Manor Road, Brackley, Northamptonshire NN13 6ED. Tel: 01280 701 275

Tinted Film Security and Solar Window Film.
Tel: 01242 523 912.

* Prices correct at time of going to press.]]><![CDATA[ME (myalgic Encephalitis) Stomach Virus Link]]>
Medical News Today -  www.medicalnewstoday.com

Myalgic Encephalitis, or ME, is associated with a stomach virus, according to an article published in the Journal of Clinical Pathology (BMJ).

ME is also known as Chronic Fatigue Syndrome.

John Chia and Andrew Chia examined data on 165 patients who suffered from ME. They all had longstanding intestinal complaints and underwent an endoscopy. An endoscopy uses a extended tube with a camera at the end; it goes in through the throat (gullet) into the stomach.

Stomach tissue was taken from the patients to test for viral proteins - these samples were then compared to specimens taken from healthy people, as well as patients with intestinal disease who did not suffer from ME.

The authors explained that ME patients frequently have intermittent or constant gut problems, such as IBS (irritable bowel syndrome) and indigestion. The following viral infections also produce several of the symptoms suffered by ME patients; glandular fever (Epstein Barr virus), cytomegalovirus, and parvovirus.

Enteroviruses infect the bowel and cause severe but brief respiratory and gastrointestinal infections - there are over 70 different types of enteroviruses, they all affect the CNS (central nervous system, heart and muscles.

The majority of the biopsy specimens obtained from patients with gut (intestinal) problems showed evidence of long-term inflammation, explained the authors. Not many were infected with Helicobacter pylori, which is a common bacterial infection that triggers inflammation.

However, 80% of the ME patients' specimens had enteroviral particles, compared to 7% of the healthy people's. Many of the ME patients had the infections had been present for several years.

"Chronic fatigue syndrome is associated with chronic enterovirus infection of the stomach"
John K S Chia, Andrew Y Chia Online First
J Clin Pathol 2007;
doi: 10.1136/jcp.2007.050054

http://jcp.bmj.com
Copyright: Medical News Today]]><![CDATA[Sick or just tired]]>http://www.news.com.au/heraldsun

By Evonne Barry

Are you sick or just tired?

Are you tired because you’re not getting enough rest, or does your fatigue have a more serious cause?

For many of us, the boundless energy of childhood is just a distant memory. As kids, we fired on all cylinders all day, every day.

But as adults, keeping energy levels up can be more challenging. Working long hours, poor diet, lack of exercise and medical conditions can all lead to fatigue.

But how do we know if lethargy is due to bad habits, or something more serious? Naturopath Mark Shoring, from the Endeavour College of Natural Health, says fatigue is often a body’s way of crying out for help.

“Often people can simply push themselves too hard,” Shoring says.

“They get to the point of exhaustion and don’t give their bodies a chance to recover.”
Shoring says a poor diet combined with inadequate sleep or exercise will eventually take its toll.

The symptoms of fatigue can be physical, mental or emotional, and include:

• Chronic tiredness or sleepiness
• Head and muscle aches
• Slower reflexes
• Poor concentration and memory loss
• lrritability
• Loss of appetite
• Lack of motivation

Sometimes there are medical explanations for what’s happening to your body, as Anita Webster, 37, discovered.

For the past 10 years, the office administrator has been battling severe fatigue and body aches.

“I wake up feeling tired, like I’ve been run over by a steamroller,” Webster says. “I fight it, but I have days when I feel really exhausted and can barely keep my eyes open.”

After being convinced by a friend to visit a doctor, Webster was later diagnosed with fibromyalgia, a condition related to chronic
fatigue syndrome.

She is now undergoing treatment at Melbourne’s Monash Medical Centre. This is a classic example of how confusing symptoms of fatigue can be.
“I didn’t realise I was any different to anyone else,” Webster says. “Because it’s normal for me, I thought everyone felt the same way.”

It’s not “normal” to have to drag yourself out of bed every morning. Or to struggle past the 3pm blues every afternoon. But doctors and naturopaths says it is common, and GPs say as many as one in every 10 visits is related to fatigue.

While there may be underlying medical problems, as in Webster’s case, fatigue can also be the result of an unhealthy lifestyle, relationship problems, financial worries or work stresses.

Often, the key to getting over fatigue is getting back to basics. Do a stocktake of your life: are you paying attention to your diet? Are you getting enough sleep? Do you do regular exercise?

Jeremy Sheppard, a senior scientist at the Australian Institute of Sport, says getting active can be a cure for fatigue.

He says that rather than tiring us out, exercise gets our cardiovascular and respiratory systems in shape for more exercise, and everyday life.

“When you increase your fitness, you increase the efficiency of your body to work,” Sheppard says. “It allows you to do your day-to-day activities, such as tolerating long meetings or running up stairs, with less stress.”

An honest assessment of diet is also very important. Then there is the big factor: sleep.

The Australian Medical Association says a lack of sleep is the number one cause of fatigue, and that the average adult needs eight hours a day to function properly.

But what if you’ve got all of those boxes ticked, and are still feeling exhausted? It’s time to consult an expert.

Call a doctor if you feel any of these symptoms: confusion, dizziness, blurred vision, unexplained weight loss or gain, swelling, constipation, insomnia, depression or headaches.

Kick-start your energy

A good diet is second only to sleep when it comes to boosting energy levels, according to Dietitians Association of Australia spokeswoman Melanie McGrice, who also runs Health Kick in Melbourne.

“People need to remember that food is our fuel,” McGrice says.

Here are her top 10 dietary tips for boosting energy:

1. Kick-start your energy levels by eating a nutritious breakfast.

2. Space your meals out evenly throughout the day. (Of course you’re going to run out of energy if you haven’t eaten for six hours).

3. Cut back on tea and coffee (especially at meal times), which decreases your absorption of iron.

4. Avoid high-GI foods such as lollies and sugar: they may give you a short-term energy boost, but it’s followed by an energy slump.

5. Change to wholemeal or wholegrain bread, which contains more iron than white bread.

6. Have a glass of milk before bed – it contains tryptophan, which helps you sleep better.

7. Avoid going to bed on an overly full stomach, which will disturb your sleep.

8. Drink at least two litres of water each day, as dehydration decreases your energy.

9. Avoid fad diets that cut out important food groups and will leave you feeling tired and run down.

10. Limit alcohol intake. Alcohol is a depressant and will decrease energy levels.

Did you know?

Chronic fatigue has nothing to do with laziness.

“It often affects people who are high functioning and very active, rather than lazy, malingerer types,” says Dr Lionel Lubitz, founder of the Austin Health Chronic Fatigue Syndrome Program in Melbourne.]]><![CDATA[Chronic Fatigue Syndrome Linked to Genes, Study Says]]>
Bloomberg.com - www.bloomberg.com

Scientists in Australia identified 35 genes linked to chronic fatigue syndrome, helping narrow the focus of research on a little-understood condition affecting more than a million people in the U.S. alone.

Researchers at the University of New South Wales in Sydney screened 30,000 genes in blood samples from 15 people known to have had infectious mononucleosis, which can lead to chronic fatigue.

Thirty-five of those genes were expressed differently in those who recovered promptly from the illness to those who went on to suffer months of physical and or mental weakness.

"It's definitely plausible that one of these genes, or maybe more than one of these genes, will be the key'' to understanding chronic fatigue, said Andrew Lloyd, professor of infectious diseases at the university's Centre for Infection and Inflammation Research, which led the study.

The findings add to scientific evidence of the existence of a distinct syndrome separate from mood disorders or depression.

No cause has been identified for the illness, which costs $9.1 billion a year in lost productivity in the U.S., according to a 2004 study by researchers at the Centers for Disease Control and Prevention in Atlanta.

Previous studies ruled out persistent infection and immune deficiencies as causes of chronic fatigue, Lloyd said. The research, published today in the Journal of Infectious Diseases, suggests the brain may play a more important role in the disease than muscles, he said.

Concentration Lapses
Some of the 35 identified genes were linked to specific symptoms, including fatigue and pain, Lloyd said. Other symptoms, including concentration lapses, memory loss and sullenness, didn't appear to be linked to a specific gene, he said.

Until the mid 1990s, so little was known about the makeup of chronic fatigue that some medical authorities questioned its legitimacy as an illness.

The potentially disabling disorder occurs most frequently in women 40 to 60 years old. There are no physical signs that identify the syndrome and no laboratory tests that can diagnose it, according to the CDC.

Since there is no known cure, treatment is aimed at relieving symptoms and improving function. Specific treatments are probably years away, Lloyd said.

His team of researchers will extend their investigation to determine whether the same genes may be associated with chronic fatigue following bouts of infections such as Ross River virus and Q fever. Infectious mononucleosis is known as glandular fever in Australia and the U.K.

Sexual Abuse Emotional, physical or sexual abuse or neglect in childhood may also be linked to chronic fatigue, according to a separate study published in November in the Journal of the American Medical Association.

That study found patients with the condition had a higher incidence of traumatic childhood events than non-sufferers.

Earlier research by the CDC showed chronic fatigue is marked by physical changes that can be identified with medical tests, not just by how a patient feels.

The study, published in April last year, found subtle disturbances in blood-related genes, as well as the central nervous and immune systems in chronic fatigue sufferers.]]><![CDATA[Re: Are we any nearer to finding a cure for ME?]]>http://express.co.uk

by Keith Riley

I found Dr. Leonard's recent comments and advice on ME (Are we any nearer to finding a cure for ME?, Daily Express, 23 September 2008) very poor to say the least. They betrayed a very flawed understanding of true ME,a devastating illness, and came over as very ill-informed as to the real facts.

If ME patients follow her advice then I fear a large amount of people are going to find their ME symptoms made very much worse and could send them on a downward spiral from moderate to severe sufferer. This has happened to many many people with ME who have misguidedly been told to do graded activity. All the patient surveys always say the same thing, that graded activity has made them worse.

Dr. Leonard has obviously taken her cues from the psychiatric lobby whose skewed biased ideas are vigorously disputed by the huge majority of ME patients. Might it be a good idea for once to actually listen to the patients who actually have the illness?

Incidentally there is no proof that people with ME have more depression than other illnesses and that antidepressants are largely helpful. Indeed a high proportion of ME patients can't tolerate these medications. Surely that says something? The only thing that makes me depressed is reading yet more plain wrong articles such as this one and constantly fighting for the proper recognition and respect that this dreadful illness requires.

Yours faithfully
Keith Riley
Sussex

]]><![CDATA[Re: Are you sick or just tired?]]>
M.E. sufferers will be pleased that Evonne Barry's article, (Sick or just tired, Melbourne Herald Sun, 1 March 2009) recognises that chronic fatigue has nothing to do with idleness but will wish that she had gone just one step further and informed a wider audience that chronic fatigue ought to have nothing to do with M.E. (Myalgic Encephalomyelitis).

It's a shame that we have to spend valuable time unpicking myths and unlikely stories that have been associated with this seriously disabling neurological illness:

It is hardly likely to be laziness when M.E. sufferers are people who have had a previously exemplary attendance record at work or school and are eager to return to normality.

The Yuppie flu myth, created in the late eighties, sticks like dirt to our shoes, even though it was never true, since M.E. affects both sexes, all age groups and social classes all over the World.

But the biggest science fiction, which is accepted by far too many doctors and researchers, who really ought to know better and which is delaying progress to finding appropriate treatment towards a cure for M.E., is the unwarranted identity switch from M.E. to Chronic Fatigue Syndrome - supposedly because chronic fatigue is the principal symptom of M.E. sufferers. In fact, people with M.E. do not put fatigue at the top of their list, if they cite it at all; muscle pain, swollen glands, cognitive dysfunction, dizziness and others are always amongst the first mentioned. Whatever is the overwhelming feeling of exhaustion in M.E., it is not fatigue as we normally understand it. It does not come on, as tiredness usually does, with expenditure of physical or mental energy, nor is it refreshed by any amount of sleep and there are some distinctive symptoms in the range, such as "post exertional malaise", or a debilitating, painful, effect disproportionate to a tiny amount of effort expended, which takes an extraordinarily long period of recovery.

Fortunately, some influential researchers, in different parts of the World, are realising that the original Myalgic Encephalomyelitis of the fifties, recognised by the World Health Organisation, in the late sixties, wasn't broke, didn't need fixing and are calling for its re-adoption.

Yours sincerely
Dr John H Greensmith
ME Free For All. org]]><![CDATA[Re: When illness is mostly in the mind]]>
The Association Francaise du Syndrome de Fatigue Chronique et de Fibromyalgie would be surprised to know that ME/Chronic Fatigue Syndrome doesn't exist in their country (When illness is mostly in the mind, New Scientist, 11 March 2009):

asso.nordnet.fr/cfs-spid/

Yours faithfully
H. Patten
by e-mail]]><![CDATA[Re: Gordon Brown: don't legalise assisted suicide]]>http://www.telegraph.co.uk/

by Dr John H Greensmith

A Populus poll in July 2009 and a BBC poll, just before the airing of the Panorama programme, about the Kay Gilderdale trial, on 1st February 2010, agree that the vast majority of the population - around 75% - is in favour of assisted suicide.

In response to Debbie Purdy's victory to have clarification whether those helping someone commit assisted suicide would face prosecution (Debbie Purdy wins House of Lords victory to have assisted suicide law clarified, Daily Telegraph, 31 July 2009), the Director of Public Prosecutions, Keir Starmer, issued interim guidelines and is due to announce a finalised policy soon. But it will remain illegal since only Parliament can change the law.

If it were to be decided by one-person-one vote, it would surely go through but a minority of powerful voices could have an influence, disproportionate to their number. When the Prime Minister, Leader of the Opposition, senior Church figures and the British Medical Association speak out against it, there must be an influence on the supposedly "free vote" that MPs will have, in accordance with conscience. And here's a dilemma: Suppose your MP is personally against assisted suicide on religious or ethical grounds but knows that the vast majority of constituents are in favour, how do they vote?

We shall never forget the name of the loving Gilderdale mum, Kay, who conducted herself with such dignity in the spotlight of the world's media but we must never let the admittedly important public debate about assisted suicide make us forget the crucial matter of M.E. that has been hidden away within misleading statistics and behind closed doors for decades, or the name of the very special Gilderdale daughter, Lynn, within the darkness of whose tiny four walls it all began.

It will be some comfort to M.E. sufferers that the Telegraph's James Kirkup referred to their dreadfully disabling illness as a "neurological condition" here (Gordon Brown: don't legalise assisted suicide, Daily Telegraph, 23 February 2010 - http://www.telegraph.co.uk/news/newstopics/politics/lawandorder/7301399/Gordon-Brown-dont-legalise-assisted-suicide.html) and again here (Debbie Purdy criticises Gordon Brown over assisted suicide, Daily Telegraph, 24 February 2010) while the rest of the press pack still report it as "the chronic fatigue syndrome". It goes some way to Kay's wish being fulfilled that Lynn will be remembered as the symbol of getting M.E. treated more seriously. It would have brought a smile to her sweet face.

Yours sincerely
Dr John H Greensmith
ME Free For All. org]]><![CDATA[Surviving ME]]>www.guardian.co.uk

The following article written by Rose Perkins (a pseudonym), which first appeared at The Guardian's website on 18 September 2007, was updated on 16 June 2010.

ME, or myalgic encephalomyelitis, has had its fair share of controversy, with many doctors refusing to acknowledge that it is an illness. Rose Perkins, now 21, explains to Carrie-Anne Savage what it has been like living with ME for the last seven years.

If I wrote of all the symptoms that I experienced everyday, you wouldn't believe me. Apart from being physically exhausted, you also have "brainfog" which is where nothing is in your mind because you don't have the energy to think – to the point where you can't string two words together. You're so exhausted you have constant body pains, not like muscle ache, more like muscle pain everywhere. You have stomach cramps every time you eat and sometimes you can't physically put food in your mouth because you're exhausted.

To read the whole article, please go to: http://www.guardian.co.uk/lifeandstyle/2007/sep/18/health-and-wellbeing]]><![CDATA[The Effect of Illness Accumulation on Quality of Life]]>
The American Chronicle - www.americanchronicle.com

It would seem obvious to most people that the more illnesses one has, the less functional they would be. Scientists, on the other hand, must prove things via empirical studies.

In a study titled 'Functioning in individuals with chronic fatigue syndrome: increased impairment with co-occurring multiple chemical sensitivity and fibromyalgia', Brown and Jason (2007) set out to "differentiate these diagnoses by comparing individuals with one or more illnesses on functioning, psychiatric comorbidity, coping style, and in vivo physical measures".

Brown and Jason were spurred by the proposal that chronic fatigue syndrome (CFS), multiple chemical sensitivity (MCS), and fibromyalgia (FM) commonly co-occur and may be manifestations of the same illness.

The researchers surveyed 114 men and women who met the criteria for CFS. They further diagnosed FM during a physical examination, and MCS using a questionnaire.

The men and women were then divided into four groups based on diagnoses: 43.9% met criteria for CFS, 23.7% met criteria for CFS & MCS, 15.8% met criteria for CFS & FM, 16.7% met criteria for all three.

Demographics varied widely. A total of 46% were referred by physicians, 34% from media advertisements, and 20% from word-of-mouth.

After an initial screening, participants were given a CFS questionnaire to collect demographics, health status, medication usage, and symptom data.

This was followed by a structured clinical interview for DSM-IV (Diagnostic and Statistics Manual of Mental Disorders) disorders to determine presence of any mental disorders.

A medical assessment of CFS was performed, including an in-depth medical and neurological history, and physical exam. A self-report measure was used for general functioning.

The Fatigue Severity Scale was added to measure fatigue and the Beck Depression Inventory was included to measure depression. A Brief Cope and Brief Pain was administered to determine how subjects reacted to stress and pain respectively. An Actiograph, designed to measure activity during every minute of a week was worn to record daily activities. A six minute walking test measured physical functioning and the Rating of Perceived Exertion was used to measure subjects perception of the intensity of their activity based on bodily sensations. Sit and reach, hand grip, and employment status were the final factors examined that concluded this extensive battery of measures.

As you undoubtedly guessed, the more conditions the subject had, the more impaired they were. Those with CFS alone were the highest functioning and those with CFS, FM, and MCS were the lowest functioning, leading Brown and Jason to conclude that "this study provides evidence that having more than one illness exacerbates one's disability beyond CFS alone", which we have already guessed would be the case.

No significant differences were found in varying socio-demographic categories. A rather large percent of subjects (68%) had a college degree or higher, suggestive of prior functioning.

A substantial number of CFS patients (56%) had co-occurring MCS and/or FM, which is consistent with prior study findings that have shown significant overlap between MCS, CFS, and FM.

Depression was more common in those with MCS, CFS, and FM combined, suggesting increased prevalence of depression in those who are more severely disabled.

Overall, this exhaustive study has shown that increased disability means decreased functioning. It is important to remember that all participants in this study suffered from CFS. FM and MCS was not evaluated alone or as a pair without the presence of CFS.]]><![CDATA[A website to bring together M.E. sufferers and their carers]]>http://www.halifaxcourier.co.uk

by Dr John H Greensmith

For M.E. Awareness Week (10 - 16 May) 2009, the UK's biggest charity, Action for ME, has launched the superb initiative, "This is the face of M.E.", with personal stories and pictures of M.E. sufferers, which we are delighted to join in promoting.

To read them and to ask to add your own, go directly to http://www.afme.org.uk/news.asp?newsid=534 or to the AfME home page and follow the links.

No one expects to be ill for years or decades but, for a majority, M.E. (Myalgic Encephalomyelitis) is a life term and, for some, a death sentence.

Rather than admit ignorance or helplessness, there is a tradition, amongst both doctors and patients, of denial and of soldiering on, in defiance of pain which, experience shows, frequently turns out to be the worst thing to do.

The origins of M.E. are uncertain but, in common with most cases reported, my onset, in 1988, was preceded by a viral infection of pneumonia. Most M.E. sufferers were previously ordinarily fit and healthy, with a good attendance record at work or school; some were quite athletic.

I had a clear medical history, except for a very bad bout of Glandular Fever (Epstein-Barr Virus), 11 years earlier, while doing my PhD.

Others may have been brought on by vaccinations, such as those for TB or Hepatitis and some may have been affected by toxicity such as by chemicals in the environment, including in crop spraying. Although it is possible for M.E. sufferers to, additionally, have a psychiatric history or concurrent illness, there is no evidence of a greater incidence than in the general population, nor that the one is a prerequisite for the other.

I have had the best possible experiences an M.E. sufferer can have: the best available medical care and support from my GP and every doctor to whom I have been referred, with never disbelief, derision, or a suspicion of malingering, a very early diagnosis and suitable treatment for any symptom relief, as required.

In addition, I have the unconditional support of a loving family and some loyal friends and I also have the good fortune to live in the political constituency of one of the best MPs in the House of Commons, Dr Roger Berry, for representation of all matters about M.E. and for practical help with disability benefit claims. It took me some years to realise that this standard of excellence, I took to be typical, is actually the exception rather than the rule.

With an academic background, as a research psychologist, it seems that the best way to make progress is to dispel myths and share the scientifically-sound evidence that we have to better understand the physical cause of this dreadfully disabling neurological illness that devastates so many lives which, in turn, should suggest appropriate treatment towards cure.

Thus, I founded mefreeforall.org, a website-based organisation to bring together M.E. sufferers, their carers, doctors and researchers in a single meeting place. Those who contribute believe that we will only reach the definitive diagnostic test that we need - perhaps a blood test, or a scan result - from reliable biomedical research for which we seek appropriate Government funding. In the meantime, M.E. sufferers need support and advice, as well as the opportunity to meet others in the same boat, to share experiences and make new friends, in order to ease the isolation this illness brings.

The Red Letter Day for raising International M.E. Awareness is 12th May and I am so pleased to contribute to this excellent initiative.

Thank you so much
Best wishes

Dr John H Greensmith
drjohngreensmith@mefreeforall.org
ME Free For All. org
North Street
Downend
Bristol]]><![CDATA[Re: My body told me to rest: I got better by doing the opposite]]>www.theherald.co.uk

by Dr John H Greensmith

I hope - in the interests of seeing all sides of an argument and because the consequences for M.E. sufferers could be so serious, even potentially harmful - that you will allow the same space and prominence to my response, as you did to Martin Greig's article, promoting Mickel Therapy and the talk to be given by it's inventor, Dr David Mickel, in Glasgow, on Saturday 17 May 2008 (*My body told me to rest: I got better by doing the opposite, Glasgow Herald, 28 April 2008*), which prompts it.

Before embarking on any course of treatment - including Mickel Therapy - M.E. (*Myalgic Encephalomyelitis*) sufferers would be well advised to weigh up what is known about the therapy being offered and learn from other areas of medicine in order to better understand any possible risks or consequences.

It is a quite legitimate, understandable, early step in any scientific enquiry to set out with a theory. The traditional approach is to test a hypothesis and, once it has been proved valid and reliable, with a high degree of probability of repetition, usually 95% or 99%, accept that the suggested treatment is appropriate and safe. Often, treatments are tested thoroughly under laboratory conditions, or on animals, before they are given to patients, to maximise safety.

In M.E. research, the approach has too often been to skip the testing and expect M.E. sufferers to be guinea pigs (for example in the PACE -* Pacing, graded Activity and Cognitive behaviour therapy: a randomised Evaluation*and FINE - *Fatigue Intervention by Nurses' Evaluation* - trials, which are being carried out on patients before the results are in and have been assessed, a practise which would be unethical in some drugs and animal experiments).

No one, as yet, has a cure for M.E. but some people claim to have treatments which "help" people with M.E., though the ways in which this help are clearly observable, such as a return to some measure of a previously healthy life, like returning to work or school, are not always obvious.

When people have been ill for long periods of time and have tried everything suggested without success, they tend to be less critical of and take bigger gambles with, more radical treatments. There is, undoubtedly, an opportunity for charlatans but, even when the practitioners are well-intentioned, reputable and honourable, they only have a theory. Interestingly, the advocates of different radical treatments advance different theories of M.E. with equal firmness that theirs is the correct one - the hypothalamus (Mickel Therapy), amygdala (the Gupta Programme), adrenaline (the Lightning Process) - yet they all remain unproven theories.

No one - not even the practitioner - knows how they work. There is no scientific evidence for them. They are not approved by any medical organisation. They have not been independently reviewed and rely only on recommendations from people, who claim it has helped them, not balanced by any dissatisfied customers, who may be too ill to speak out or fear the consequences if they do. They are often, quite secretive, pyramid-sold treatments, practised by a motley crew of people with disparate, indefinite, qualifications, such as 'life coach'. There are no follow-up studies, or statistics available, to check whether M.E. sufferers relapsed; anecdotal evidence suggests that many do. A single session often costs as much as some people, on benefits, have to manage on for a week. They rely on faith and put the responsibility to get better squarely on the patient. Thus, if the M.E. sufferer says they feel better, success is claimed for the treatment but if they say they have not improved, it may be said the patient was somehow negative or not ready for it.

In other areas of medicine, treatment is given even when the causes of an illness are not fully understood and the scale of possible side effects of treatment is unknown. The stakes are high. For example, we are now seeing some of the undesirable after-effects of chemo- and radiotherapy; I'm sure that the people behind Thalidomide had nothing but good intentions; frontal lobotomies seemed a good idea at the time. This is not scaremongering. We know, for sure, these things happen; we do not know, for sure, how many cases there are of damaged M.E. patients and whether any improvements would have been achieved without any treatment at all.

It is probable that there are many more M.E. sufferers, who have been badly affected by a particular treatment than we know about because the victims are too ill, after it, to speak out; some are daunted by the energy required to respond publicly; some fear threatened litigation, even bullying. We simply don't know the figures because the work hasn't been done.
Furthermore, claims of success for M.E. patients do not take account of later relapses, again because follow-up studies have not been done and the statistics are not available.

It is also possible that the success doesn't belong to the therapy claiming it because the patient may not have had M.E. at all but some other illness misdiagnosed. Or, credit may, instead, belong to some other intervention taken simultaneously, which has not been considered, in a multivariate analysis. Or, improvement may be due to the passage of time, during which resting and gentle pacing has had an ameliorative effect. Indeed, pacing is recommended as the treatment most likely to show a beneficial effect by most M.E. sufferers, though it does require discipline and is easier said than done.

For some, it's too late once the damage is done. Patients considering any exercise treatment, even in clinics with recommended therapists, should take note of the experience of M.E. sufferers who had well-meaning advice from GPs to exercise and finished up in wheelchairs, or bed bound, from which they have not recovered their previous level. There is also experimental evidence, in this country and in Belgium, that even the more orthodox recommended treatments have no lasting benefit for people with M.E, or leave some irrecoverably worse than before.

The advice of this Research Psychologist and 20-year M.E. veteran is that it is better to have no treatment at all than one which does you no good, or leaves you worse after it. Remember, the burden of proof is on those recommending the treatment, not for patients to acquiesce for any other reason than firm evidence.

At ME Free For All. org we have a reputation for even-handedness and welcome contributions of all shades of opinion to our discussion groups at http://www.mefreeforall.org/Mickel-Therapy.212.0.html

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org]]><![CDATA[Re: Carol in 23-year struggle with ME]]>www.rugbytimes.com

by Dr John H Greensmith

Every article, about the Lightning Process, I have ever seen, has one thing in common: the subject of the piece (Carol in 23-year struggle with ME, Rugby Times, 30 September 2008) always goes on to become a practitioner themselves and, consequently, benefits from a page of free advertising space.

The Lightning Process has no scientific evidence to support it; is not authorised by any medical authority; is a very secretive organisation, run by a heterogeneous group of people, with no recognised qualifications and is expensive beyond the reach of most people with M.E., in receipt of disability benefits, who have about the same to manage on for a whole week, as it would cost for about an hour's session with a self-styled "life coach".

The Lightning Process is really only proven as a successful pyramid-sold venture, which is making its founder, Phil Parker, a millionaire at lightning speed.

Yours sincerely
Dr John H Greensmith
ME Free For All. org]]><![CDATA[Raltegravir Is a Potent Inhibitor of XMRV, a Virus Implicated in Prostate Cancer and Chronic Fatigue Syndrome]]>www.plosone.org

To read the Research article, please go to:

http://www.plosone.org/article/fetchArticle.action;jsessionid=703A8B1A6C333DC6FF1E23DDD1847BE2?annotationId=info%3Adoi%2F10.1371%2Fannotation%2F5217bc5f-fac3-4cca-bb52-a6914754608c&articleURI=info%3Adoi%2F10.1371%2Fjournal.pone.0009948]]><![CDATA[What is chronic fatigue syndrome or ME?]]>
Times online - www.timesonline.co.uk

Child health experts at Great Ormond Street Hospital talk about chronic fatigue syndrome, probably the most common medical reason for absence from school

Chronic fatigue syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), can affect children and young people as well as adults. It’s more common than you might think.

Between two and six per 1,000 young people suffer from the condition and it‘s probably the most common medical reason for absence from school.

CFS/ME can be debilitating. Extreme tiredness, sleep problems, nausea, dizziness, headaches and joint pain are just a few of the symptoms, and the impact on a young person’s life can be devastating. Those affected may be unable to go to school, lose contact with peers, and become generally less able to be involved in their usual activities.

WHAT IS IT?

What is CFS/ME?
It is significant tirednesss which is severe enough to restrict usual everyday activities, and has been present for at least three months. It doesn't go away with rest or sleep, and usually affects every aspect of a person's every day life.

Other symptoms include muscle and joint pain, headaches, nausea and dizziness. Sufferers often sleep erratically. Finding it difficult to concentrate, being forgetful and experiencing mood changes are also common symptoms.

Why does it happen?
Unfortunately we don’t know what causes it, although there are several theories. The condition is typically triggered by a viral infection from which the young person does not recover in the usual way. By the time the condition is diagnosed, there is usually no evidence of the triggering illness. Some affected children and young people seem to have subtle abnormalities of the immune system and others may be more allergic than the general population. Yet only a few seem to be helped by allergy treatments.

What we do know is that looking for a cause - once all the appropriate medical tests have ruled out other possible reasons for tiredness - is not useful. While there isn't a cure for CFS/ME, we are beginning to understand more about this complex condition and there are a range of tried and tested treatments that can help.

When should I seek medical attention?
It's a good idea to see your GP if the symptoms continue for more than three months. Your child may be referred to a paediatrician at this stage.

How is it diagnosed?
There is no definitive test that diagnoses CFS/ME. Routine tests, including blood tests, are carried out to exclude any other possible causes of the tiredness. This is usually the first step. Many medical conditions can cause fatigue, for example glandular fever or thyroid hormone deficiency. It is important to exclude these, as they need specific treatment. Your GP will want to know if there have been any recent infections.

A diagnosis of CFS/ME is usually made by a process of elimination and by taking a careful history including medical, school, social, activity and family history with all test results negative.

Many young people will then be referred to a paediatrician by their GP and some go on to be referred to a specialist team working with children and young people with CFS/ME.

What does treatment involve?
There is no cure for CFS/ME but a variety of treatments can help. These treatments should be prescribed and reviewed by a specialist CFS/ME team, or by a professional with specialist expertise and experience of working with young people with CFS/ME.

Complete rest is not a good idea, particularly at this age. Lack of exercise is associated with brittle bones, poor growth, school failure and possible psychological problems.

A TREATMENT PLAN

Treatment usually centres around routine: avoiding boom and bust
Young people with CFS/ME say they have good days and bad days. On a good day, they are often very busy (boom), but on the following days, their symptoms seem worse than normal (bust). Having a routine where your child does the same things every day helps get rid of these boom and bust feelings.

Sleep
Not getting enough sleep can affect how much activity a child can do and how well they feel. Getting a good sleep routine in place is a key part of treatment. This part of the rehabilitation programme tries to help improve the quality of your child’s sleep. This means your child is more able to take part in activities.

Activity & exercise
Everyone finds it difficult to get back to normal activities when they have been ill for a while. This may be because your muscles have become weak and you may have become unfit. Some people are frightened of making their symptoms worse by doing particular activities. A physiotherapist can help put together a plan of how to improve what your child can do each day.

Returning to school
School is a normal part of everyday life. The team caring for your child will work with you, your child and your local school and health teams to plan your child's return to school. Some people find that having lessons at home is a good start.

Medication
While there is no medication to cure CFS/ME, it is sometimes possible to help with the symptoms such as poor sleep.

Working with families
It can be helpful for your child to discuss their feelings with the team and other staff. Being ill can have an effect on the whole family, so it may help you as parents, and also brothers and sisters, to talk about your feelings too.

How successful is treatment?
Most young people on a rehabilitation programme recover within 12 to 24 months. This means that they are able to get back to school and to their usual social activities within this time.

What else is going to help?
As well as getting into a good routine, seeing friends again on a regular basis is also important. Keeping time watching TV and using computers to a reasonable level is a good idea as watching screens excessively can adversely affect sleep, mood, social contact, and concentration.

What's the outlook?
Most young sufferers who take active steps towards recovery in a planned and gradual way do return to a normal life.

Who else can help?
There is a support organisation for young people with CFS/ME: Association for Young People with ME (AYME). Telephone: 08451 23 23 89 (Monday to Friday from 10am to 2pm) www.ayme.org.uk.

The National Institute for Health and Clinical Excellence (NICE) published guidance last month on CFS/ME. It included a section for parents, carers and the public. Visit www.nice.org.uk.

In summary:
Chronic Fatigue Syndrome is more common than many realise. It's important for the condition to be recognised as soon as possible in order to get early access the right support and treatment.

Contact our advertising team for advertising and sponsorship in Times Online, The Times and The Sunday Times.

© Copyright 2007 Times Newspapers Ltd.
]]><![CDATA[Feedback to 'Controversy over new ME guidelines' article]]> "Controversy over new ME guidelines"

From Colin Barton

Help is at hand if you have ME

Concerning the controversy Mr Riley perceives in the treatment offered at the specialist ME/chronic fatigue syndrome service based at Haywards Heath (Letters, September 4), we would confirm that officers from our charity worked with representatives of all of the Sussex primary care trusts and London's St Bartholomew's Hospital for over four years planning and implementing the service that operates in three sites across Sussex.

The service has handled over 1,000 referrals from GPs since it was established two years ago and is a multidisciplinary team led by two specialist physicians.

Mr Riley's notion that the service views ME/chronic fatigue syndrome as a physiological illness is not remotely the case. Indeed these days it would be unusual for any professional to view the illness in that way.

If Mr Riley has ME and is isolated with his illness he could do worse than ask his GP for a referral. He then would realise that the dedicated NHS team is doing everything possible to help people with this dreadful illness.  We also operate 20 helplines across Sussex and can be reached on 01273 674828.

Colin Barton
Chairman,
Sussex ME/CFS Society
Robin Dene,
Brighton
http://www.measussex.org.uk

From Bill Kent

I would like to assure your correspondent Mr Keith Riley that reMEmber is not impressed by the National Institute for Health and Clinical Excellence (Nice) guidelines for ME.

Nice is promoting cognitive behavioural therapy - a psychological treatment which is of limited help against a physical illness - and graded exercise which can be harmful to ME patients who are not well enough to follow such a regime.

Fortunately there is much good biomedical research being done by leading research doctors and scientists, such as Jonathan Kerr and John Gow in the UK and Sue Vernon in the USA, which shows that ME is caused by an up-regulation of the immune system, often following an infection.

A definitive test for the illness cannot be far away and a treatment that helps to modulate the immune system will then follow, but this may take time.

In the meantime reMEmber is doing all it can to help ME patients. We have a helpline and newsletter. We run self-management courses to help people deal with the everyday problems that ME brings.

We help people to understand the illness, how to pace themselves, conserve scarce energy, manage medicines and diet and so on.

More than 250 have attended our courses and most say they feel better. And most important is the friendships and social network they form, and the feeling of relief that they are among people who understand.

Our next courses start in Hassocks on September 20 and in Eastbourne on November 8.

For more information
Contact reMEmber on 01273 831733,
email me_cfs@hotmail.com or see www.remembercfs.org.uk

Bill Kent
Secretary
The Chronic Fatigue Society
High Street
Hurstpierpoint  ]]><![CDATA[Supporting Information for Susceptibility of xenotropic murine leukemia virus-related virus (XMRV) to retroviral restriction factors]]>http://www.pnas.org

Supporting Information for Susceptibility of xenotropic murine leukemia virus-related virus (XMRV) to retroviral restriction factors

Please go tot this site to read the document -

http://www.pnas.org/content/suppl/2010/02/24/0913650107.DCSupplemental/pnas.200913650SI.pdf]]><![CDATA[Two ME sufferers challenge ‘perverse’ guidance given to doctors]]>The Herald - www.theherald.co.uk

by Phil Miller, Arts Correspondent

A former violinist for the Scottish Philharmonic Orchestra launched a High Court battle yesterday to change the "perverse and irrational" guidance given to doctors who treat ME sufferers.

Douglas Fraser, a former professional concert musician, along with Kevin Short, a university graduate and engineer, want a judicial review of the guidelines given to doctors for the treatment of Myalgic Encephalomyelitis (ME), or chronic fatigue syndrome, which affects an estimated 250,000 people in the UK.

They believe they should focus on medical treatment for the condition as well as the therapies advised by the National Institute for Health and Clinical Excellence (Nice).

Yesterday, at the High Court in London, a judge was told the medical watchdog that issued the guidance was unlawfully recommending a restricted range of treatments on the NHS. Lawyers for the two men also accused Nice of appearing to be biased, because individuals responsible for the guidelines had failed to declare certain interests.

Both Mr Fraser, from London, and Mr Short have had their careers blighted by the illness, which causes extreme exhaustion, sleep disturbances, memory and concentration difficulties, headaches and pain in the muscles and joints.

Jeremy Hyam, barrister for both men, told Mr Justice Simon that, although the claim was being brought by only two individuals, their view that the guidelines were biased, or had the appearance of bias, "is shared across the ME community".

Mr Hyam told the judge he was resting his case on the appearance of bias, but the difference between that and actual bias was "fine".

The guidelines were issued by Nice in August 2007 through a guideline development group. Mr Hyam said various members of the group had failed to declare their personal and non-personal interests prior to their selection.

The group itself was constituted of members who, as shown by published literature and declarations and other sources, had a "predisposition" for recommending cognitive behaviour therapy and graded exercise therapy for the treatment of ME.

Mr Hyam said these recommendations had been perversely or irrationally made "to the exclusion of other treatments". The barrister argued the guidelines were "perverse or irrational" and "not justified" in the light of the "nature and cardinal symptoms" of ME, research evidence and the experiences of patients and clinicians.

Although Nice's lawyers say the guidelines have been "widely welcomed", Mr Hyam claimed they had in fact been "widely condemned" by the vast majority of UK charities working in the field.

Andrew Dillon, of Nice, said: "The group considered a range of complex issues in great depth taking full account of the views of patient groups and health professionals."

Reproduced with permission of The Herald, Herald & Times Group ã 2009.

]]><![CDATA[Myalgic encephalomyelitis - The roots of chronic fatigue]]> http://www.economist.com

ME is a puzzling illness, but it appears to have a biological basis and a test for it could be developed

A DISEASE that carries with it a social stigma causes additional and unnecessary suffering. This has often been so with myalgic encephalomyelitis (ME), or chronic-fatigue syndrome, as it is also known.

Despite debilitating symptoms, patients have been accused of suffering from an imaginary illness: “yuppie flu”. Doctors have struggled to distinguish the ailing from the malingering. Nonetheless, evidence has grown in recent years that the syndrome is real, and now there is news that it has its roots in genetics.

ME manifests as extreme exhaustion, something that may include a range of other symptoms, such as disturbed sleep, difficulties in remembering and concentrating, headaches, and painful muscles and joints. Psychological symptoms, such as anxiety and irritability, can also be present. As the symptoms can vary in severity, the syndrome can be hard to identify, and patients can suffer for months before a diagnosis is made.

However, new hope for ME sufferers arrived this week at a conference in Cambridge, in Britain. The event, organised by ME Research UK and the Irish ME Trust, two charities that help to fund studies and assist sufferers, was attended by researchers investigating what causes the illness and how it could be treated.

Jonathan Kerr of St George's University of London told the meeting that with his colleagues they have identified 88 genes which are expressed differently in the blood of patients who had been diagnosed with ME. Moreover, in studying the records of 55 patients with ME, they found that they could divide them into seven separate sub-types that consistently pair distinct genetic patterns with a combination and severity of patients' symptoms.

This, says Dr Kerr, points to a biological basis for the illness and holds out hope that a blood test could be developed to identify its different forms. His group are now trying to find the biological markers that such a blood test would need to detect.

ME, myself, why?
One tactic for dealing with ME is to treat its symptoms with drugs that are already used against other diseases. Patients with some of the severest symptoms suffer from low blood pressure and have difficulty regulating their heartbeat.

Julia Newton, of Newcastle University in Britain, says this is because of problems with their autonomic nervous systems, which is responsible for subconscious activities.

In studies using a magnetic-resonance imaging scanner, she found a build-up of acid in the muscles of ME patients when they took exercise. This can cause muscle weakness and pain.

Dr Newton believes the build-up could be influenced entirely, or at least in part, by the degree to which the autonomic nervous system fails to properly maintain blood flow. It could also mean that drugs that already exist to help improve blood flow might also help some ME patients.

But what triggers ME?
Some estimates put its occurrence at around one in 200 people in America and Britain. Sufferers are often in their 20s and 30s, and more women are affected than men.

That it is so widespread suggests to some researchers that there are many causes, including exposure to certain viruses and other infectious diseases. A long period of fatigue after suffering from an infectious disease is not unusual.

At the conference, a team of Australian researchers speculated that many cases of ME are in fact cases of “post-infectious chronic fatigue”.

Stephen Graves, of the Australian Rickettsial Reference Laboratory, said they had found a proportion of Australian ME sufferers may have a genetic predisposition to developing ME as a result of exposure to Q Fever or Flinders Island Spotted Fever.

These are a pair of relatively uncommon diseases caused by two bacteria which can pass between animals and humans. If their hypothesis is correct, Dr Graves believes the incidence of ME in Australia may be reduced by greater public-health measures.

Although the trigger for most cases of ME may remain a mystery, the discovery of its biological roots and the promise of a test will bring hope of a diagnosis to sufferers. And, perhaps, inspire a sudden recovery in the malingerers.]]><![CDATA[Re: Cognitive Behaviour Therapy recommended]]>
Cognitive Behaviour Therapy is not only one of the few preferred therapies, available on the NHS, for people with M.E. (Myalgic Encepahlomyelitis), it is, with Graded Exercise Treatment (GET), the only option available. That there may be a waiting list, in some places, does not indicate popularity or desire to have it but no other choice.

It is worrying that a network of clinics has been set up in the UK to offer only these management strategies, when the evidence based (a phrase, which Dr Helen Nightingale uses in recommendation of CBT; Letters, Isle of Man Examiner, 10 March 2009) on review studies has been widely considered unreliable, because of flaws in experimental design, by people of at least equal qualification with those who acclaim them.

One might expect CBT to be "highly regarded" by NICE (National Institute for Health and Clinical Excellence), since the guidelines were drafted by a Development Group dominated by members who always had a preference for it and/or derive employment from their implementation.

There are also some substantial differences between the theory Dr Nightingale posits in her letter and the experience of patients in practice. She says that CBT is led by clear protocols and can't be altered according to what the therapist likes to do. Yet, a major claim is that treatment is "tailored" to the individual patient's needs. The guidelines suggest that treatment should be negotiated and agreed between therapist and patient but, in practice, the therapist decides. Further, although the guidelines say that a patient should be able to decline any treatment at all, or ask for it to be stopped if it is painful or distressing, this is often not made clear and patients are reluctant to challenge the authority of the therapist or referring GP.

Latest research (in this country, Belgium, USA and Japan), by some of the very same people who advocate and/or practise CBT and GET, shows that one, CBT, has no lasting benefit, without relapse, for people with M.E., while the other, GET, leaves a majority worse after it, some irrecoverably so. On the basis of this evidence, this organisation suggests that it would be better to have no treatment at all than one which does you no good or may even make you worse.

Yours sincerely
Dr John H Greensmith
ME Free For All. org]]><![CDATA[Re: M.E. sufferers relief at biggest UK Charity statement, 20 April 2010]]>
http://www.mefreeforall.org/April-2010.2430.0.html
04/21/10

In the run up to M.E. Awareness Week (9 - 16 May 2010), M.E. sufferers, not only in the UK but around the World, will be hugely relieved that the biggest UK Charity, Action for M.E., has made such a clear and unequivocal statement opposed to the proposal of M.E. (Myalgic Encephalomyelitis) being reclassified in the next edition of The Diagnostic and Statistical Manual for Mental Disorders (DSM-5) as the psychiatric illness "Complex Somatic Symptom Disorder" in its submission to the American Psychiatric association (Complex Somatic Symptom Disorder, AfME News, 20 April 2010).

Will AfME now add further comfort and substance to the hopes and prayers of M.E. sufferers for a better understanding of the organic cause of their illness - already recognised as a neurological illness in the World Health Organisation (WHO) Handbook and for which there is ample postmortem evidence of inflammation of the spinal cord to justify its name - by calling for all funding to be directed to biomedical research, not squandered on psychiatrically based projects, in the hope of finding appropriate treatment towards recovery, perhaps even a cure? Will AfME equally forcefully challenge the NICE (National Institute for Health and Clinical Excellence) Guidelines of 2007, which recommend only treatments developed for the management of psychiatric illnesses? And will Action for M.E. recommend a suspension of GP referrals to a network of clinics, predominantly staffed by Psychiatrists and Clinical Psychologists, offering a combination of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) since the latest research review (Twisk and Maes, September 2009) confirms the findings of all research to date, including that of the advocates, practitioners and AfME's own survey for M.E. Awareness Week 2008, that CBT is ineffective and GET makes a majority of M.E. sufferers worse, some irrecoverably so.

There is an abundance of anecdotal evidence that, despite reassurances to the contrary, M.E. sufferers are not involved in shared decision making, are being directed against their wishes towards these treatments but suffer in silence, fearing any consequences if they speak against it to the therapists, who gave it to them, or the GP, who referred them for it. They, in particular, will be most grateful for this tough stance and firm representation.

Yours sincerely
Dr John H Greensmith
ME Free For All.org

]]><![CDATA[Mum-to-be Sarah also facing test of coping with ME]]>www.echo-news.co.uk

by Vanessa Moon

NEW mums are destined to be exhausted, but how do you cope if you also have a debilitating illness?

For Sarah Morgan, who has ME, it is something she has to come to terms with soon, as her first baby is due in only a few months.

Sarah, 26, from Eastgates, Colchester, has battled with ME since she was 17 and she now knows how to control the condition.

But that does not mean she is not concerned.

Sarah says: “I am worried I will be really tired and if I get too rundown, I won’t be able to look after the baby.

“When I had a relapse of ME, I couldn’t even lift a cup, so how will I be able to lift a baby if that happened again?”

Sarah developed ME a short time after she had her tonsils out when she was 16. She said it was a bad experienced and she never fully recovered from the infections when she suddenly found herself exhausted, in pain, and unable to leave her bed.

Sarah says: “I couldn’t get out of bed for six months and then I was in a wheelchair for six months. I had to do my A-levels from home because I didn’t want to give them up and I didn’t want to be defeated. I went on to university in Canterbury because I wanted to be a teacher, but I had to give it up after 18 months because it became too much.”

The problem was a lack of routine at university, says Sarah.

“There were different lectures every day at different times and my body was saying, ‘You aren’t doing that’. I had to come home.”

ME, short for myalgic encephalomyelitis is a chronic and fluctuating illness which is sometimes referred to as chronic fatique syndrome by national support organisations and the medical profession.

Sufferers are keen to stress that ME is not the same as chronic fatigue, which is different to chronic fatigue syndrome.

About 20 to 30 years ago, before much was understood about ME, it was referred to as yuppie flu, an insulting term insinuating sufferers were just being lazy and wanted to sleep all day. But nothing could be further from the truth.

Although there is still no concrete medical test to diagnose it, GPs are now more open to it as an illness, taking into account medical history. Now there are an estimated 250,000 people, including children, who have it.

It affects different parts of the body, such as the nervous and immune systems, and it most commonly manifests itself through severe fatigue, exhaustion, problems with memory and concentration and muscle pain.

Sarah describes the feeling as if “someone has taken your batteries out”.

She says: “It’s like having the worst cold or flu you can imagine and there is nothing in you.

“I always feel a little bit vacant and haven’t got the energy to think about anything. It’s unlike me because I am quite focused and determined.

“I always know it’s coming because I don’t have the energy to think and I just feel numb to the world.

“There is a lot more help and support around than when I was diagnosed and a lot more awareness of ME.”

After recovering at home following university for six months, Sarah managed to get work as a telephone sales representative with Essex County Newspapers in North Hill.

She is now a team manager and doing well. Despite two relapses, Sarah has been working full time for the past five years, but now she has to start taking it easy again.

The support of her family and husband Matthew, 28, whom she met two months before being diagnosed with ME, have helped Sarah through her illness. The fact her mother had it in her twenties is also a source of much advice and guidance.

She says: “My mum has a low immune system, so she gets hit harder than the average person, but she has adapted and coped with having two children. But things were different then as my mum didn’t have to go back to work – I do.”

However, Sarah is determined to keep going.

“Doctors are worried I may not have enough energy to give birth, but I said I wanted to keep working until three weeks before the baby is born.”

Sarah knows she has to take each day at a time and said keeping to a strict routine has helped.

She added: “If I have no structure, I would be asleep all the time and get depressed, but you have to motivate yourself to do something everyday and that is work. A lot of it is about positive thinking, which can be difficult, but you have to believe you can beat it. If I had let it consume me, I would still be sitting in bed.”

Group is here to help

COLCHESTER ME Self Help Group is a registered charity and available to those who have the condition and their family and friends.

The group helps sufferers with questions regarding employment, family and where to turn for help.

Chairman Vivienne Mills said: “Our aim is to help people as much as possible.”

The group now has 200 members.

Its next meeting is on June 6 at 2pm at the RAD Hall, in Walsingham Road, Colchester.

For more information, call Vivienne Mills on 01206 530297.]]><![CDATA[Re: I believe there is a cure for ME - I've tested it]]>http://www.dailymail.co.uk

by Hayley Klinger

Zena Gibson refers to Chronic Fatigue Syndrome (CFS) as the medical term for ME (I believe there is a cure for ME - I've tested it, Daily Mail, 20 November 2008).

Actually, CFS is a name given to many different illnesses involving 'unexplained chronic fatigue', whilst ME is a term used by medical experts around the world for a complex multi-system illness in which studies have found serious immunological, neurological, endocrinological, genetic and cardiac abnormalities. ME devastates the lives of patients and it is not the same as fatigue.

Zena goes on to claim that she was cured by the Lightning Process (LP) and that adrenaline was the cause of her illness. As shown by the research into the biochemistry of ME, adrenaline is not the cause but, even more bizarrely, no-one involved in LP has ever shown that it actually does reduce adrenaline levels!

Chronic Fatigue can be caused and cured by many things and I am glad Zena is better; however for ME sufferers with the serious abnormalities found in ME a cure will depend on biomedical research, not on unproven and scientifically unsound therapies.
 
Hayley Klinger
Media Relations
25% ME Group]]><![CDATA[Re: Are we any nearer to finding a cure for ME?]]>http://express.co.uk

by Jean Long

I am deeply concerned by the erroneous advice Dr Leonard provided readers who have may have ME rather than chronic fatigue (Are we any nearer to finding a cure for ME?, Daily Express, 23 September 2008)

Cognitive Behaviour Therapy (CBT) and graded exercise programmes may well help patients with unexplained fatigue due to lifestyle factors, or other illnesses but it is not suitable for those who have ME (Myalgic Encephalomyelitis).

The graded exercise Dr Leonard recommends involves aerobic exercise; the very form of exercise that should be avoided by people with ME. Research has proven that people with ME do not have a normal response to exercise; many who previously had mild to moderate ME and followed these programmes are now severely affected.

The incidence of depression in ME is no higher than it is in other similar neurological and chronic illnesses; in fact the rates are often lower. The advice on antidepressants is misleading too; they are one of a range of medications and medical interventions that can make patents with ME worse; as with graded exercise the ill effects can be permanent.

It is important that patients who have the ME understand their illness before agreeing to a graded exercise programme or CBT that involves a sustained increase in mental or physical activity. The ME Association (http://www.meassociation.org.uk), the 25 ME group for the severely affected (http://www.25megroup.org) and the Tymes Trust for young people (http://www.youngactiononline.com/index.htm) provide information and support. ME Research UK 
(http://www.meresearch.org.uk )is also a good information resource and funds serious medical research. 

Until serious researchers are provided with adequate funding we will not get any nearer to finding a diagnostic test, more effective treatments and a cure.

Yours faithfully
Jean Long]]><![CDATA[ME has taken over my daughter's life]]>http://news.bbc.co.uk

Kay Gilderdale, whose 23-year-old daughter Lynn is severely ill with ME tells BBC News Online how the illness has affected her family over the last nine years.

Lynn Gilderdale, from Tunbridge Wells in Kent, was a happy 14-year-old when she fell ill.

She had been an active teenager; sailing, dancing, playing the clarinet and piano and going out with her friends.

After a BCG vaccination for TB, she felt unwell. She then went on to have bronchitis, tonsillitis and glandular fever in quick succession.


If I could bring people here each day and make them see what Lynn has put up with... It's taken over her whole life

Kay Gilderdale
Kay said: "Our GP told us she was developing a post-viral infection. But she began to get very ill and we knew that there was something very serious going on."

She was diagnosed then as having ME.

The family followed their GP's advice and encouraged Lynn to take as much exercise as possible.

But that proved to be the worst course of action, says Kay. "We would walk her down the road and she would get back to the house and collapse.

"It got to the point where she was totally bed-ridden and she couldn't sit up without going unconscious.

"She couldn't swallow anything at all. She was in terrible pain, with muscle spasms and she had swollen glands and lymph nodes.

"We were very frightened by the whole thing and we went to the medical profession to try to get some help."

But she says: "We came up against a brick wall because nobody seemed to realise ME could be that serious."

'Lack of help'

A short stay in a psychiatric ward, the only place available, proved to make Lynn's health worse.

Lynn is bed-ridden
Lynn is bed-ridden
So for the last nine years, Kay has cared for her daughter at home, giving up work to do so.

She says she gets extremely angry when people dismiss ME.

"Lynn knew she was very ill. We knew she was very ill, but she had doctors and nurses telling her that she was pretending and that she could do more.

"We get very very mad if we see anyone who doesn't believe ME is an illness, and if people just think its a very minor illness.

"If I could bring people here each day and make them see what Lynn has put up with... It's taken over her whole life."

When she came home, Lynn could do nothing for herself. She could not even speak.

Over the last nine years, she has suffered a number of complaints.

Last year she had a clot on her lung. And she has suffered from low cortisol levels, which could have led to her adrenal glands failing.

In the course of treating that, doctors looked at the hypothalamus in the brain, and found that was where the problem lay. She is now on steroids to correct the problem.

Lynn also has osteoporosis because of low oestrogen levels.

Her health has improved a lot over the last nine years. She still cannot speak, but can communicate through sign language, and she is bed-ridden, but can mover her arms and the top half of her body.

Her memory is still bad, and she has to be fed through tubes because she us unable to swallow.

Kay says the family's life has changed dramatically since Lynn got ill, though the family have no way of knowing when she might get better.

But she is determined to do so. Kay says: "Lynn always says to us that she hasn't given up so much not to get better."

Over the years she has had to watch her friends, and her older brother go through the normal stages of growing up, and hearing their news makes her happy.

Kay says: "But sometimes I read letters to her and there are tears in her eyes because she can't do any of that."]]><![CDATA[The trouble with ME]]>http://www.guardian.co.uk

by Sarah Boseley

We mark ME awareness week with a report on the latest research into chronic fatigue syndrome – and the controversy that surrounds the subject

To read the article, please go to:
http://www.guardian.co.uk/society/2010/may/13/me-chronic-fatigue-syndrome]]><![CDATA[Re: I believe there is a cure for ME - I've tested it]]>http://www.dailymail.co.uk

by Paula Gilfedder

I read your article about the lady who was 'cured' of M.E by the Lightning Process (I believe there is a cure for ME - I've tested it, Letter in Daily Mail, 20 November 2008). If only it were so easy!

Having researched M.E for many years I have never yet found any evidence that M.E is related to adrenaline.

So now we go back decades and return to calling the illness 'yuppie flu' because this lady maintains that all we have to do is be 'laid back and miss work' and no-one will ever get M.E.

Researchers all over the world are working tirelessly with very little funding and have concrete evidence that this severely debilitating illness is a very physical and neurological problem. It is articles like these that make the illness seem trivial which is extremely dangerous and plays right into the hands of the people who are holding back the money which is so desperately needed to continue with the research to find a proper cure for M.E.

Paula Gilfedder
Belfast]]><![CDATA[Delay in Release of Study on Chronic Fatigue Syndrome Prompts at Outcry]]>www.nytimes.com

By DAVID TULLER

Researchers at the National Institutes of Health and the Food and Drug Administration, citing a need to re-evaluate their data, have delayed publication of a new study believed to provide evidence of a link between chronic fatigue syndrome and a little-known retrovirus.

The study, already peer-reviewed, was supposed to appear in the prestigious Proceedings of the National Academy of Sciences. The delay has sparked an outcry on blogs and social networking sites among chronic fatigue patients, who are desperate for answers about their debilitating illness and fear that important scientific data are being suppressed.

To read the whole article, please go to:
http://www.nytimes.com/2010/07/14/health/14fatigue.html?_r=1&scp=1&sq=&st=nyt
]]><![CDATA[Jane's Flash Recovery]]>http://www.mailonsunday.co.uk/home/you/index.html

by Angela Neustratter


When nurse Jane Flowers (pictured left) was bedridden for a year with severe ME. She was convinced that she would never get better.Then she discovered the Lightning Process ...

Jane Flowers, 50, jumps up from the window seat of her Brighton home, the large family dog she has just walked for two hours beside her and opens the front door. She makes coffee, chats animatedly and laughs a lot.

Nothing unusual in this, you might think, except that three months earlier Jane was bedridden with such acute ME that she had not been able to go downstairs for the past year. Crossing the landing to the bathroom left her on the point of collapse and taking a shower was out of the question. Her eldest daughter Sally, 17, bed-bathed her and washed her hair. Jane's eyes hurt if she kept them open for more than a few minutes and a raised noise seemed to tear her head apart.

`I was terrified. I thought I would never get better,' she says. The family went into freefall. My 11-year-old daughter Louise asked .me if I was going to die. My husband Adam was devastated by what seemed the unlikelihood of my ever being well, or us ever getting back our loving relationship.

It was in January 2006 that Jane, a highly qualified pain management nurse and daughter-in-law of the renowned London art gallery owner Angela Flowers, reached the point where she retired to her bed for the next 12 months. She'd had a particularly bad dose of flu and, although she got better enough to return to work, she was quickly overwhelmed by exhaustion. 'I found that doing anything, even walking around the house, was impossibly hard. My stomach became swollen and painful. I was constantly on the verge of tears.'

The doctor diagnosed ME but, Jane says,'Nobody really understands the condition and, if you have it badly, there's very little doctors can offer you. I tried antidepressants but they didn't work. Neither did Cognitive Behavioural Therapy or activity management. Special diets did nothing to improve my state and I spent a fortune on vitamins that were supposed to help strengthen my body, but they were useless.'

The roots of the ME had been there, Jane believes, for many years. She suffered postnatal depression when she gave birth to Sally. her daughter by her first marriage. She goes on: But then I met Adam, had Louise, took on a stepdaughter and started a new job. Everything felt wonderful and exciting.

However, as time went by I began to feel more and more exhausted and that I wasn't able to cope with it all. I became anxious and then insomniac and I was aware of feeling unbearably stressed.'

As she lay in bed, unable to do anything but listen to the radio at gentle volume, Jane heard an item about the Lightning Process, which was initiated in 2000 by Phil Parker, hypnotherapist, osteopath and neurolinguistic programming (NLP) practitioner. Sufferers of ME and a range of other stress-related diseases learn how they can teach the body to behave differently and enable the brain to create new positive neurological pathways.

Jane says, 'Listening to people talking about how they had been helped I felt, for the first time, that this might be something for me. As a medical practitioner, I know that the nervous system is not fixed - it can be altered for better or worse. The idea of your brain learning to conjure up positive neuro-chemicals instead of negative stress hormones made sense. I have always been wary of things that seem too new age but this had a sound scientific basis.'

Jane contacted Charlotte Farrant, a practitioner willing to come to the house (the Lightning Process is most often done in groups and in residential settings). Farrant, 42, had been an ME sufferer herself for 18 years. She recovered over a period of weeks after doing the Lightning Process with Phil Parker and was so impressed that she took the training course.

`When I arrived at Jane's home, her husband let me in,' Charlotte says. She was upstairs lying in a dark bedroom looking like a corpse. At the end of the three days she was dressed and made up, ready to go on a shopping expedition.'

Over the ten hours spread across three days that Charlotte spent with Jane, she addressed the complex physiology that underlies ME and showed how It is possible through body movements, postures and asking key questions to repattern your neurlogy.

And that, Jane says, is what happened. 'During the first hour of the course I felt my eyes clear. During the second my head cleared and during the last two hours I was able to get up and practise the movements. After Charlotte had gone I had a bath on my own, got dressed and went downstairs to greet my husband and children for the first time in a year.

'By the end of the third day I was able to go into town for the first time since I retired to bed and spent five wonderful hours there.'

Charlotte says,'I watched Jane come back to life. She said she was the happiest woman in the world.'

It is the combining of the life-coaching techniques of NLP, self-hypnosis and the powerful impact of osteopathy on muscles and the skeleton that is key, says Phil Parker, who is also Principal of the European College of Holistic Medicine. He says: 'This approach is fundamentally different to therapy or treatment because it is not done to people, they do it for themselves and it is a tool they can use throughout their lives.'

Parker, who works in the UK and the US, specialises in ME and sees people of all ages, from children to pensioners, who may have had it for anything from a few months to 40 years. Some 85 per cent recover enough to lead normal lives, he says. Some report that they're better by the end of their three-day training, for others such as Charlotte, it can take longer.

And then there are the wonder stories.'I had someone who arrived in a wheelchair because he could stagger just a few yards with a stick,' says Parker. 'After the training he walked 26 miles. A mother who was "lost" to her family not only got better but went on to have twins.

'But it does require commitment because the process is only as successful as the amount a person puts into it It is so satisfying because this is an area where modem medicine has very little to offer.'

It is difficult to imagine that Jane, with her long, dark, curls brushed to a sheen, stylishly dressed and well made up, is the immobilised wretched person she describes of a few months ago. For her the great joy is that it was not 'a short-term wonder that worked for a few weeks and then had me back where I started'. She felt so much better she even persuaded Adam that they should take on a boisterous rescue dog.

She has started painting and has a busy social life, making up for lost time. But for now she will not go back to work as she sees this as an opportunity to spend more time with her family.

Jane smiles broadly, describing the way she views her transformation. 'It's like a rebirth. I've got a whole new chunk of life which I can enjoy with vigour and I feel wonderfully optimistic about the time ahead.

For more details of Phil Parker's Lightning Process, tel: 020 8895 4007 or visit lightningprocess.com

'IT WORKED FOR MY DAUGHTER'
Esther Rantzen
Journalist and author: 'My elder daughter Emily had ME for 14 years. A friend told her about Phil Parker's Lightning Process and, though she had steadfastly refused all other complementary treatments, she decided to give this one a go. Although the process, I am told, does not work for everyone with ME, it worked for Emily and for many other people I have subsequently recommended should try it. Today, Emily has a full-time job and a full social life. My daughter is well again.'

'My WIFE WAS TRANSFORMED'
Austin Healey
Strictly Come Dancing and former England rugby star, whose wife Louise developed ME after the birth of their first child: 'Lou had no energy. I spent a lot of time trying to find ways of making her better but I didn't get anywhere. Then I read about Esther Rantzen's daughter, who had been helped by Phil Parker. I thought, "Right, I'll give that a crack." But I was sceptical - I thought the people going through the programme were acting. Then I saw the transformation in Lou in just three days. It was like a miracle - I had my old wife back.'

Copyright: Mail on Sunday 2009
]]><![CDATA[Re: When all else fails, blaming the patient often comes next, New York Times, 21 October 2008]]>www.nytimes.com

by Dr John H Greensmith

Dr Richard A Firedman's rare admission that some doctors, sometimes blame some of their patients for remaining ill, despite the treatment(s) they have been given, which the doctor feels ought to have cured them, or made them better (When all else fails, blaming the patient often comes next, New York Times, 21 October 2008), gives us the opportunity not only to discuss how many doctors, from general practice and other specialities, behave in this way but their motives for doing so.

We shall almost certainly not reach universal agreement but perhaps some probability confidence level to support our conclusions.

Some doctors do not even accept that a patient can have a particular illness at all because, they say, it doesn't exist, or they re-name it, even when other doctors not only accept it but have scientific evidence for its existence.

We don't know how many doctors do not accept Myalgic Encephalomyelitis, or who have changed their original diagnosis of M.E. to CFS (Chronic Fatigue Syndrome), since the publication of officially recognised guidelines (in the UK, NICE, The National Institute for Health and Clinical Excellence), which recommend it but common experience in the doctor's surgery and media reporting, suggests it is a large majority.

These doctors do not have the same profit motive as private health and insurance companies, who may not have to pay out if they re-define a recognised neurological illness like M.E. as CFS, which could possibly have a psychiatric cause, even though there is postmortem evidence for it and its sufferers say that "tiredness" or any other synonym for "fatigue" alone does not cover and they are not routinely depressed.

Some doctors may not need too much of a nudge to accept the possibility of a psychiatric cause since they have no definitive diagnostic test to prove a physical cause and no treatments for it but, certainly in the UK and probably elsewhere, they are encouraged to do so by official government guidelines, often compiled by some of the advocates and practitioners of the treatments recommended.

Ironically, this may be more like Munchausen's syndrome by proxy (MSP), that is, in this case, tolerating or even encouraging a particular illness, in order to maintain their career and paid employment, than the MSP of which carers, often a relative who endures financial loss and life restrictions, are sometimes accused of but of which a vast majority are later acquitted after, sometimes enforced, psychiatric scrutiny.

The psychiatrist's "by proxy" version may also be more likely than the Munchausen's syndrome, that is, the desire to keep up the pretence of illness, in order to attract attention, of which some patients are accused, even when most M.E. sufferers, for example, have massive disadvantages - inability to work (or go to school, if a child), consequent reduction in standard of living, social isolation, fractured relationships on top of the physical pain of the illness itself - which most likely outweigh any reason for faking it.

Previous experience should teach us that it would be better  to spend all our resources of time, energy and money on biomedical research to better understand the physical cause of an illness like M.E., in the hope of suggesting treatments and perhaps finding a cure, rather than clinging to untenable theories, such as a psychiatric cause of M.E or hypothetical constructs, such as MSP, as some do now, not only because there is compelling anecdotal evidence from patients and research evidence from objective scientists but because other illnesses, once believed to have a psychiatric origin, such as MS for example, have now been proven to have a physical cause. Current thinking and behaviour suggests that we have not learnt by such experience.

Doctors perhaps ought to know that patients do not expect them to be omniscient, infallible, demigods but just to do their utmost to provide the best care, treat the symptoms they can and offer support. They should not see their patients as a nuisance, disproving their current theories, or making them seem inadequate but rather presenting them with an, as yet, unknown illness, as a welcome challenge to their professionalism.

Yours sincerely
Dr John H Greensmith
ME Free For All. org ]]><![CDATA[Re: The tablets made me feel like a zombie - life with ME]]>http://www.newsandstar.co.uk

by Jill Cooper

I was impressed by what Tracy and Tony Elliot have to say about the  illness, ME (The tablets made me feel like a zombie - life with ME, Cumbria News & Star, 24 september 2008).  The illness, which is classified by the World Health Organisation as neurological, manifests itself with so many different symptoms which seem to affect the immune and endocrine system as well.

There is a lot of evidence which supports the fact that this is a physical illness and yet people are repeatedly treated by many doctors as though they have a psychological illness.

The recently published NICE guidelines advocate the use of Cognitive Behavioural Therapy (CBT) and Graded Exercise Treatment (GET) regardless of the fact that many patients report that neither of these management techniques are helpful.
 
The advice given by Tracy is excellent:  to pace yourself because if you push yourself, you will make the symptoms worse.

I am glad to hear that Tracy has been tested for other things because often people with ME eventually discover that they really have other 'difficult to diagnose' illnesses such as celiac disease, MS, Crohn's Disease etc.

I think it is marvellous that this couple are trying to highlight the truth about this ME.  There are thousands of people with it, and many of them are very neglected.  There is an urgent need for biomedical research to take place to establish the true nature of the illness.  The Government has not funded biomedical research but it wastes an awful lot of the taxpayers money on things like Cognitive Behavioural Therapy(CBT).

Jill Cooper
Rugby]]><![CDATA[Re: Are we any nearer to finding a cure for ME?]]>http://express.co.uk

by Josette Lincourt

The article by Dr. Rosemary Leonard (Are we any nearer to finding a cure for ME?, Daily Express, 23 September 2008) is very disappointing.  Anyone who advises to consult the Royal College of Psychiatrists for ME proves to lack information on the subject. Psychiatry as such is far from being scientific and its good and long-lasting effects are also far from provable.

When enough has been invested in biomedical research for ME and still no one can pinpoint a cause, which is far from where we're at, it is still not a reason to consider ME as being either a mental or an emotional disorder (which is what psychiatry is supposed to help), but only a reason to have medicine as a whole admit that it does not hold the response to every disease.  Why do so many in the medical world - and more so in psychiatry - just keep on falling under the spell of large pharma who would just love to zombify the world with its anti-depressants?  These are not candies and although they can possibly help extremely depressed people, they should not be prescribed lightly.

Josette Lincourt
Montreal
Canada]]><![CDATA[Notice: New blogspot for Mary Schweitzer - 'Slight;y Alive']]>
http://slightlyalive.blogspot.com/

The first blog is called:

"Who is Suzanne Vernon, scientific director of the CAA, speaking for? Not for me!"

In time I will move all my original blogs over to this new space.

"Slightly Alive" is the name of my as-yet unpublished manuscript on The Disease.

Mary M. Schweitzer, Ph.D.]]><![CDATA[Carol in 23-year struggle with ME]]>
by Chomice Wright

Carol Ward suffered with a debilitating condition for 23 YEARS before lightning struck and she found a way to fight back.

Carol, from Long Lawford, is one of around 250,000 people in the UK struggling with ME, sometimes known as Chronic Fatigue Syndrome.

The 59-year-old experienced headaches, memory loss, muscular pain and such severe exhaustion that even being on a mobility scooter for 15 minutes could affect her for weeks.

It took the mum-of-one three years and a second doctor's opinion to be diagnosed and a further 20 years before she tried a radical new treatment called the Lightning Process – a last-ditch attempt to get better.

The treatment targets the mind, bones, muscles and brain through hypnotherapy, osteopathy and neuro-linguistic programming.

Carol said: "For many years I didn't feel as if I had a life, I just watched others live theirs. "I struggled to bring up my daughter and felt very guilty when I couldn't do the things other mums did with their children.

"Parties, weddings, christenings all passed me by. I didn't have a holiday for 20 years. "The last five years I became virtually housebound. I thought I would gain some freedom with a disability scooter but riding it for 15 minutes would cause a relapse that would last for weeks."

Now Carol claims her latest treatment has turned her life around and the former business woman has even turned her hand to practising it herself. She added: "One of the first things I did was something I had wanted to do all my life: learn to swim.

"My next adventure was a holiday, flying alone to meet a friend in Spain. I remember sitting on the plane waiting for take-off. I thought I would wake up from a dream any moment.

"I decided to train because I thought it's just so amazing. It's in its infancy but it's becoming known for helping people get better."

Copyright: Rugby Times 2008]]><![CDATA[Feedback to 'NICE to see' article]]>
Action for ME acknowledge that, "Many patients have reported little or no benefit from CBT and others have experienced seriously adverse effects from GET." (Press release, 22 August 2007)

Yet, at the same time, they welcome the NICE (National Institute for Health and Clinical Excellence) guidelines for the treatment of M.E. (Myalgic Encephalomyelitis ), which recommend Cognitive Behaviour Therapy and Graded Exercise Treatment because these treatments, "show "the clearest research evidence of benefit", ignoring the serious reservations that the evidence on which their conclusions are based is selective and seriously flawed.

AfME is quite right to call for research to identify better treatments for M.E. sufferers but there is a vital step missing before this - well designed and properly funded biomedical research to discover the physical cause of M.E. - and it would surely be more logical, in the meantime, to advise against these treatments - as other M.E. organisations, including this one, have - since the harm done to some M.E. patients, rendering them wheelchair bound or bedridden, may be irreversible.

The rigorous scrutiny that Chief Executive Officer Sir Peter Spencer now promises would have been more welcome years ago, before a network of clinics was set up offering these same treatments. Nothing will change for M.E. sufferers until the biomedical research comes first.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org]]><![CDATA[The Reality of Severe ME]]> www.metrainingco.org.uk

The recently published NICE guidelines (Aug 22) on "CFS/ME"are shameful, they ,offer nothing to true ME sufferers.

ME; it is waking up in intense unbearable unbelievable pain for 14 years and knowing it's going to probably be the same forever not because it has to be like that but because it is being manipulated like that.

Having severe ME is unimaginable ; the experience is so different , intense and unremitting than anything I have ever experienced before.

I am never unaware of the range of symptoms that rage through my body , and are over ridingly dominated by intense never ending pain in every millimetre of my skin and muscles, over and throughout my whole body; head shoulders, back, front , arms legs, hands , feet, toes , fingers, eye lids , scalp the souls of my feet, the tip of my nose , my eyebrows even. They all burn, throb, tingle, itch, and hurt in ways indescribably unbearable , along with other unusual sensations that flow and ebb, expand and contract, and irritate beyond belief.

My throat hurts, my eyeballs are swollen and itch , prickle, burn, throb , unceasingly, My ears hurt to touch inside and out and noise, even a whisper can be excruciatingly loud and painful.

Street noise, cars revving, doorbells, telephone, dogs barking,conversations at normal sound levels , all can torment me. The screeching sound of knives and forks on plates, the sound of people chewing even are exaggerated by my hyperacusis . Any regular sound is intolerable such as a clock ticking, a newspaper rustling, a plastic bag being opened, or someone banging, a lawn mower ,a hoover send out devastating sound vibrations that I feel not only in my ears but in my whole body as pain.

I become completely alienated from the world I seemingly and supposedly exist in. I cannot bear to see people because they exhaust me with questions and conversation, with thudding foot steps, loud voices; they irritate me with their insensitivity and unawareness of my hypersensitivity, and hurt me physically - a hug or a pat on the back can be like a huge blow.

Light is intolerably bright, television and computer screens hurt my eyes, reading anything causes my brain to somehow overload so that I cannot receive or process information . Written or verbal descriptions both have the same affect. Letters jump around the page or make no sense or shape at all. I stare a lot because it is too painful to focus.

I say yes or nod when I cannot even understand the conversation because it is making no sense and my mind has become a fog of nothingness. My head has a huge pressure on top with the deepest of throbs that incapacitates me completely physically and mentally. I often feel as if someone has driven a wedge down the centre of my head so there is no awareness inside it where I should be able to think perceive visualise imagine.

As I lie down I feel not only my head throbbing in unstoppable pain waves , but also my hands, my feet, my calf muscles, my face , my lips, my whole body is actually throbbing in unison. As I lie down too weak to sit up any longer, my muscles spasming and seeming like jelly too insubstantial to hold my back upright, I find that I cease to function in even the most basic of movements.

I cannot move my fingers. I cannot move my legs or my arms. I cannot reach the glass of water by my bedside despite i am gasping with thirst and my mouth is parched dry.

My eyes are dry too, the tear film will not stay covering it so that moving my eyeballs is like rubbing them with sandpaper. Often it seems as if i am looking down a dark tunnel. I do not have full vision.

As I fall into sleep or near sleep mode my whole body ceases to move completely and totally. When I sleep I am still semiconscious for a lot of the time, the pain in my body penetrating my awareness or tormenting me with lucid dreams in Technicolor. In the deepest sleep I might feel innerly peaceful but then struggle to reawaken. As consciousness arises I discover I cannot move my eyelids, I cannot open my mouth or speak to call out for help.

My breathing is uneven and difficult with my diaphragm muscles struggling to move evenly and properly. My whole body pain has intensified to a vast degree . There is no possibility of movement of any kind. There is no response to any voluntary command to move. My whole body is an immovable throb of burning pain .

My face has become palsied. Whole areas of my skin have become numb, particularly severe is my left side,: especially my left ear neck , face and arm,though sometimes oddly enough it switches so that my right side is worse.

I have left sided head pain which is intensified greater on that side, for it is still present on the other side too. My lips are numb , my nose is numb , my eyeballs feel numb and grotesquely enlarged.

I cannot even move my littlest finger let alone my hand. My feet are numb and my limbs are cold. I lie like this with my bladder bursting, desperate to go to the toilet yet unable to call for help and unable to bear being touched or moved.

Any attempt to move me will cause me to spasm and go into such agony that I cannot tolerate it. And so I wait. i wait and wait until touch becomes more bearable, till speech becomes possible, till fingers can be moved and limbs manipulated and knees will lock so that i can hopefully sit then eventually stand with support .

The wheelchair waits but motion brings new difficulties. Standing brings dizziness and black outs, motion brings vibration and impossible irritation . Once I have moved a little I may be able to move a little more, but the pain never ever goes away.

It is constant in my life and everything i do is filtered through this experience of pain, numbness , muscle dysfunction and acute hypersensitivity. No activity or action is enjoyable physically. There is no position that does not hurt. There is no seating that is comfortable, the pain does not miraculously go or decrease because

I lie down - I am in physical discomfort to physical torment every moment in every position. On top of this general all over intense pain i have a damaged hip from a bad osteopathy experience, i have a damaged cartilage in in my knee but my body is too weak to be operated on and my drug and chemical sensitivity plus my sleep paralysis and breathing difficulties make an operation impossible.

I have severe period pain, I have painful, tender to touch, throbbing guts and IBS type symptoms, I have a damaged lower back and recently I have hurt my shoulder.

I have food sensitivities and drug allergies, I have all over body spasms, i have dental work that I am too ill to have done, I have low level thyroxin, I have low cortisol levels. I have had severe anaemia for the last 2 years . I experience hypoglycaemia regularly.

I feel ill all the time and I feel worse after minimal effort. I have been told I have less than 20% functional ability at best and less than 10% at worst. I have a severe and chronic neurological disease that is acknowledged by the World Heath Organization (WHO) at ICD10.9.3.

I am unable to manage without physical assistance and have to live in silence and stillness with very little outside contact. because i have such little energy and such severe symptoms.

I regularly burn myself because i cannot accurately tell the temperature of hot things such as bath water, hot water bottles.

I fall over often and bump into things because i have poor balance, poor spacial awareness and proprioception, poor coordination and I get dizzy. My muscles simply do not work properly. I drop things. I often and daily cannot hold things, like knives. forks, pens, telephones, All my cups and cutlery need to be light or they hurt me to lift.

Standing is difficult and hard to explain why , unless you understand the orthostatic intolerance present in ME. My symptoms worsen after any exertion and I completely run out of energy and have to go back to bed.

Walking varies from completely impossible to severely limited . I have a wheelchair for indoor and outdoor mobility yet it is still often unuseable because of the complexity of symptoms I experience.

Although i live in a beautiful place I have never been able to walk to the village shop, the post office ,go cycling, go to the pub, the many restaraunts, the church services, the cinema, the theatre, go bird watching, go on the local sandy beaches.

Having ME means you lose friends and it is virtually impossible to make new ones because contact is so hard to maintain and normal social events are a torment that become impossible to participate in. You cannot join in family occassions or celebrations - and in the end people stop inviting you, they stop expecting you and often they blame you rather than continue to reach out in new ways to understand the illness.

Holidays are impossible because of poverty, difficulty with travelling, unsuitabley hard beds, potential intollerable environmental noise, chemical sensitivity, and inaccesibility to everything.

Visiting others is another virtual impossibility because of multiple sensitivities and just feeling so very very ill al the time .

Planning anything is utterly impossible because you never know from moment to moment what you can physically manage. and keeping appointments is extremely unlikely.

Why then do I have to keep reapplying for my Disability Benefit every three years?

Why did I have to fight and complain about wrong assessments to get my home properly adapted?

Why did I have to endure condescension and dismissal by a neurologist not interested in my neurological symptoms?

Why do I have to accept psychiatrist' s recommending inappropriate therapeutic techniques as 'treatments'?

Why do I have to accept the denial of the WHO categorising of my neurological disease in the NICE guidelines and the promotion of a biopsychosocial psychiatrically motivated approach to my disease, when it is not a mental health illness?

Why do I have to accept a complete lack of biomedical clinics and a derth of biomedical clinicians in dealing with my disease?

Why is there no government backing for physical research?

Why are People who have vested interests in insurance companies allowed to be advisors to DWP regarding guidance in my illness?

How can the psychiatrists be allowed to define inaccurately my disease with too few symptoms and promote a vague symptom of fatigue that is not the primary dysfunction in ME?

How can the psychiatric lobby get away with changing the name to CFS to ensure this wrong focus?

How can the neurological nature of this illness be dismissed and people who have neurological symptoms be denied a proper service because of them?

How can inappropriate therapeutic techniques be promoted by NICE when they are not wanted by people with ME as they make them more ill and disabled potentially if not actually?

Why is the ME community so divided when the issues are so clear?

People with neurological Encephalomyelitis are physically ill.

They need biomedical research and new biomedical treatments developing.

They need physical research to understand the disease and develop a true identification process.

 They need accurate diagnostic criteria, accurate physical diagnosis and prognosis.

They need psychiatry to be placed back where it belongs which is not as a first line involvement with people with ME.

They need a Benefit system and an NHS service that is not marred by vested interests.

They need GP's who understand that ME is a physical illness.

They need full body mapping and proper in depth tests that will show the wide range of serious dysfunction in the many different systems of their bodies.

They need a full biomedical report.

They need validating, supporting and valuing.

They need new aids and equipment developing that can take into account their very special needs due to acute hypersensitivity.

They need easy access to benefits and aids and equipment and services.

They need care staff and medical staff and anyone involved in offering an ME service to be properly trained and aware how best to work with people with such complex symptoms.

They need to be seen and heard and understood.

Services need a complete change and need to be underpinned by sound biomedical research and knowledge.

If people with ME and all people who are involved with ME spoke and worked in unison we might actually start to get somewhere.

The worst thing about having ME is not the vast array of unending symptoms , that there are no drugs to alleviate, it is the isolation caused by people , both medical, official and in society including families, who do not understand this is a serious and severely disabling physical illness.

It is having to live in fear that you wont get your benefits.

It is having to accept you will get wrong treatment or poor treatment or no treatment often.

It is knowing that you are physically ill but here is no appropriate treatment for you and there is not going to be unless the untruth pushed by the psychiatric lobby is drowned out and shown to be false.

It is knowing that there are few clinicians if any who can actually help you.

It is knowing that you have not had proper tests and that you are not going to get them even though there are tests that could be done.

It is knowing that the psychiatric lobby is downplaying this serious neurological illness and saying it is a mental health issue and no research or tests are necessary.

It is knowing that you need a proper diagnosis and medical involvement to gain the benefits , but if your GP or clinician or benefit agency doctor is psychiatrically oriented you are simply not likely to get the right help and support that you need.

It is knowing that as your neurological symptoms worsen that there are no neurologists who are willing or interested to help you locally and you are too ill to travel to see someone anyway.

It is knowing that going to hospital for tests is most likely a waste of time and energy and will lead to disappointment because they are not doing the right tests.

It is knowing that if you need drugs for some other condition they may well react badly because of your ME so you do not know if you dare take them.

It is knowing that the psychiatric promotion of the biopsychosocial approach is so successful that it is wrongly influencing doctors and nurses who may have to treat you one day and will not understand how very ill you are and will not therefore understand how to treat you properly.

It is being too ill to speak or read or write or type or fight for what is your right.

It is not knowing who to turn to for help advice support and alleviation of symptoms.

It is knowing people are being made worse by psychiatric interventions , even dying from them .

It is seeing the psychiatric lobby gain footholds in the institutions that should be supporting people with ME and knowing they are are gaining ground and power.

It is knowing that you are really ill but you have not got what you need and there is little hope of getting it.

It is understanding why people might commit suicide in this climate of disbelief and dissemination of falsehoods about the true neurological nature of ME.

We need to stand up for the name Myalgic Encephalomyelitis.

We need to stand up for proper and full criteria , such as Ramsay defined or Canadian defined or hopefully even clearer more up to date but accurate criteria, to identify this specific illness.

We need to stand up and demand biomedical research , biomedical input and biomedical clinician involvement.

We need to stand up for the truth of our disease.

We need to speak out the truth of this devastating physical illness and we need to be strong together.

We need to demand that the focus on fatigue be stopped and stopped now.]]><![CDATA[Living with chronic fatigue syndrome]]>Guardian.co.uk - http://www.guardian.co.uk

by Emily Levick

A first person account of how one young woman lost her teenage years to ME

To read the article, please go to:
http://www.guardian.co.uk/society/2010/may/13/chronic-fatigue-syndrome-me]]><![CDATA[ME Association UK (MEA) response to a letter in the Daily Mail about the Lightning Process]]>
The letter appeared yesterday (November 20) under the headline  'I believe there is a cure for ME: I've tested it'
The Lightning Process - Another miracle cure for ME?
 
Zena Gibson (letters 20 November) believes that ME is caused by raised levels of the stress hormone adrenaline and that it can be cured by an expensive 3 day training programme known as the Lightning Process - discoveries that are worthy of a Nobel Prize.  She is also convinced that ME is a disease of 'yuppies' - hence her use of the derogatory term 'yuppie flu'.

What we do know about ME is that there are numerous abnormalities involving the brain, muscle, immune and endocrine (hormonal) systems.  However, there is no firm scientific evidence of raised adrenaline and no results from proper clinical trials to show that the Lightning Process actually works.  ME has no social class bias - so it cannot be termed 'yuppie flu'.
The ME Association has been monitoring a succession of miracle 'cures' from the alternative health sector for the past twenty years.  They are expensive. They are nearly always based on unproven or highly speculative scientific theories.  And they are seldom subjected to any form of objective clinical assessment.  So no Nobel Prizes so far.
 
Consequently, we prefer to campaign and raise funds for research into the real physical cause of this illness – rather than giving false hope about unproven cures to desperate and vulnerable people.
 
Dr Charles Shepherd
Honorary Medical Adviser
ME Association UK
www.meassociation.org.uk]]><![CDATA[Study Shows Exercise May Not Be What the Doctor Ordered for Your Fatigued Friend]]> www.americanchronicle.com

Most people with chronic illnesses, such as chronic fatigue syndrome (CFS), fibromyalgia (FM), and multiple chemical sensitivities (MCS), have been offered well meaning advice, such as joining a club, getting some exercise, and getting out more.

These infuriating, but well meaning, suggestions often leave the chronically ill individual feeling misunderstood. After all, would it be appropriate to tell an paraplegic to have fun by going dancing? Of course not!

Well meaning friends often believe that chronic illness is psychological and victims just need to get out and have fun. Or, they may believe that the victim would not be tired if they got in shape. Or worse, they think the illness is affecting the chronically ill person at a psychological level and believe that to be the reason why the ill person does want to go out more often.

In reality, those with chronic illness are quite adept at pacing themselves to avoid exhaustion. What friends fail to realize is that exertion is exertion, regardless of work or play.

Now science has stepped in to provide evidence of this. Researchers in Japan noted that patients with chronic fatigue syndrome (CFS) report substantial symptom worsening after exercise and took an interest in the specific time course of the worsening.

They investigated the influence of exercise on the subjective symptoms and cognitive function of 9 female CFS patients and compared them with 9 healthy women. An exercise test was conducted and monitoring of vital signs, cognitive function, and psychological status was performed from one week prior to exercise until two weeks after exercise.

Physical symptoms in the CFS patients did get worse on the fifth day. However cognitive and psychological status remained constant. There was no cognitive or psychological benefit to the exercise, yet patients became more fatigued and suffered physical decline.

Regardless of pleasure or pain, exertion is exertion. Pleasurable exertion holds the same fatiguing capability for the chronically ill as unpleasurable exertion. And there are no psychological benefits to boot.

The next time we recommend to a CFS patient to get out more, have fun, and exercise, it might be best to think twice and opt for a quite home movie that won’t make the person sicker and more discouraged instead.

Reference
Yoshiuchi K, Cook DB, Ohashi K, Kumano H, Kuboki T, Yamamoto Y, Natelson BH.
A real-time assessment of the effect of exercise in chronic fatigue syndrome. Physiol Behav. 2007 Jul 24.

About the Author
Lourdes Salvador is a writer and social advocate based in Hawaii. She is a passionate advocate for the homeless, having worked with her local governor to open new shelters and provide services to the homeless in a new approach to end homelessness.
That passion soon turned to advocacy and activism for victims of multiple chemical sensitivity.

Since 2006, she has been the president of MCS America and a featured monthly writer for MCS America News.
She co-founded MCS Awareness in 2005. She also serves as Partner, Environmental Education Week and Partner, Collaborative on Health and the Environment (CHE).

For more information about Lourdes and her advocacy work, please visit:
www.mcs-america.org , www.thetruthaboutmcs.blogspot.com , and www.cafepress.com/mcsamerica .

Copyrighted © 2007 Lourdes Salvador]]><![CDATA[Killing time]]>http://www.economist.com

Chronic fatigue may be a by-product of an anti-infection mechanism TUMOUR NECROSIS FACTOR ALPHA sounds a pretty intimidating molecule. And, indeed, it is. One of its jobs is to kill cancer cells—or, rather, to persuade them to commit suicide. But its name is a bit misleading.

For TNF -α, as it is known in the trade, does more than just shrink tumours. It is one of a group of proteins called cytokines that are used by the immune system to boss other body cells around. They do so by feeding the cells in question signals that cause them to switch particular genes on or off in response to infection.

Over the past few years, there have been hints that one of these responses is fatigue. Moreover, TNF -α has been implicated in fatigue that is not associated with infection.

To look into this idea further, Thomas Birchler of Zurich University Hospital and his colleagues decided to study the effect of TNF -α on the biochemical clock that keeps bodies running in sync with the sun. Their results, just published in the Proceedings of the National Academy of Sciences , show that this effect is profound and may help to explain the phenomenon of chronic fatigue.

The genes that control the body clock are most active in parts of the brain called the suprachiasmatic nuclei. However, they are—like all other genes—found in almost all cells and are frequently studied in specially cultured fibroblast cells that are easy to work with.

It was on these that Dr Birchler began his investigation. Adding TNF -α to the fibroblast system did indeed throw a spanner in the works. Six of the clock genes were suppressed by the cytokine in ways that would, in an actual animal, be expected to promote sleep. So, having proved the point in a Petri dish, Dr Birchler and his colleagues went on to see whether that expectation would be realised. It was.

The same biochemical changes took place in the brains of mice, and the mice in question were far less active than untreated mice. As a response to infection, such inactivity makes sense. Just as fever (which is also controlled by cytokines) creates an environment hostile to the reproduction of bacteria and viruses, so lethargy conserves energy that can be directed to building up the immune system—an extremely demanding task.

In both cases what look at first sight to be damaging symptoms caused by an infection are actually adaptive (though unpleasant) responses to it. However, even well-evolved systems can go wrong and, just as the immune system occasionally attacks the body it is supposed to be defending, causing a so-called autoimmune disease, so it looks as though the TNF -α fatigue response may sometimes appear at the wrong time.

One example of an autoimmune disease is rheumatoid arthritis. This is often associated with fatigue, and an experiment carried out last year by Louise Pollard of King's College, London, suggested TNF -α might be involved.

Dr Pollard injected fatigue-ridden arthritis patients with a protein that binds specifically to TNF -α, and thus reduces its concentration in the body. Those who underwent this treatment felt less fatigued as a result. It is also possible that TNF -α is the explanation for the scourge called chronic-fatigue syndrome. No one knows what this actually is, nor how it is triggered.

Some researchers, though, think viral infection is involved. That would certainly activate the immune system, encouraging TNF -α production—and enhanced levels of TNF -α have, indeed, been reported in people with chronic fatigue syndrome.

This has generally been thought of as a symptom—and as support for the infection theory of the syndrome. But perhaps it is the cause. If so, reducing the cytokine's level in sufferers might bring them some relief.]]><![CDATA[Feedback to 'Stomach virus 'may trigger M.E.'' article]]>
by Dr John H Greensmith

Whatever the outcome of the M.E. research you report today (Stomach virus 'could cause ME', Daily Mail, 13 September 2007), it is refreshing to see money being spent seeking a physical cause, rather than assuming that, because we have not yet found one, M.E. (Myalgic Encephalomyelitis) must be a psychiatric illness, even though there is no evidence of a greater incidence of psychiatric history amongst M.E. patients than in the general population.

Incredibly, the search for a physical cause was considered beyond the remit of the NICE (National Institute for Health and Clinical Excellence) Guidelines for the treatment of M.E., published last month; especially so, as it was recognised that this would be "very helpful".

Some M.E. sufferers will think this litotes, some woeful neglect but perhaps a majority will not be surprised since the Guideline Development Group was dominated by  psychiatrists who recommended the same two management techniques - Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET) - in the first place and continue to use them despite being based on selective evidence of questionable reliability and warnings of irreversible harm to people with M.E.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org]]><![CDATA[Wessely's Way: Rhetoric or reason?]]> www.investinme.org

by Margaret Williams and Professor Malcolm Hooper (as sent to IiME)

Source: http://www.investinme.org/Article-130%20Williams%20Hooper%20Wesselys%20Ways.htm

On 22nd March 2008 the Financial Times carried an item by Glasgow GP Dr Margaret McCartney (“If it’s in the mind, it’s still the real thing”) in which she stated that neither ME – to which she referred as “myalgic encephalitis” instead of the correct term myalgic encephalomyelitis –  nor fibromyalgia (FM), nor repetitive strain injury (RSI) nor irritable bowel syndrome (IBS) “has a clear pathological or biochemical abnormality”.  She went on to confirm: “It’s certainly true that many doctors see these kinds of symptoms as an irritating and time-consuming diversion from ‘real’ pathology”.

Unfortunately for ME patients in the UK, such comments are nothing new.

The person whose work has had most impact on their lives is psychiatrist Professor Simon Wessely, whose  twenty-year published record on ME patients underpins such ill-informed comments, for example:

    * “The description given at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic and he will often be disgusted with them’ ” (In: Psychological Disorders in General Medical Settings, ed: Sartorius et al; Hogrefe & Huber, 1990)


    * “Blaming symptoms on a viral infection conveys certain advantages, irrespective of its validity (and) is beneficial to self-esteem by protecting the individual from guilt and blame” (In: Post-Viral Fatigue Syndrome. ed: James Mowbray and Rachel Jenkins.  John Wiley & Sons, 1991)

    * “It seems that ME sufferers prefer to feel they have a ‘real’ disease – it is better for their self-esteem” (Pfizer Invicta Pharmaceuticals 1992:4-5)

    * “Patients with inexplicable physical symptoms are generally viewed as an unavoidable, untreatable and unattractive burden” (Brit J Hosp Med 1994:51:8:421-427)

    * “Somatisation sufferers consume vast amounts of health resources for little benefit” (Clin Exp Allergy 1995:25:503-514)


    *  “The term ME may mislead patients into believing they have a serious and specific pathological process. Several studies suggest that poor outcome is associated with social, psychological and cultural factors” (Joint Royal Colleges Report on CFS, October 1996


    * “ME has never been fully accepted as a real condition, says Simon Wessely”  (The Guardian, 21st April 1998).  Note that the World Health Organisation fully accepted ME as a real condition in 1969 and continues to do so
      .

    *  “It is only human for doctors to view the public as foolish, uncomprehending, hysterical or malingering” (BMJ 2003:326:595-597)


    * “Science is indeed socially controlled, and so it should be” (The Guardian, 1st March 2003)


    * “Functional somatic syndromes include chronic fatigue syndrome”  (Rev Bras Psiquiatr 2005:27:3).  This is noteworthy, given that Wessely is on public record as stating: “I don’t classify CFS as a somatoform disorder” (Wessely Answers Questions. 10th April 2002: CAME).

From the above quotations, it seems there may be an explanation why doctors such as Dr McCartney are so misinformed.

However, not only does it seem that Dr McCartney has been careless over her terminology but it also seems she has not kept abreast of the medical science that has revealed the pathological and biochemical abnormalities now known to underpin these disorders.

Moreover, she claims that the recommendation for cognitive behavioural therapy (CBT) in the NICE Guideline on “CFS/ME” does not imply a psychological cause because “behavioural treatments can be used to improve the quality of life of people who have diabetes, asthma, or cancer”. This is undoubtedly so, but the key differences that seem to have been overlooked by Dr McCartney are that in those disorders,  appropriate investigations and effective interventions are not ignored or proscribed and, importantly, behavioural therapy is an adjunctive and not the primary – indeed the sole – management recommendation as it is in ME/CFS.

Dr McCartney harks back to the much-criticised 1999 paper by psychiatrists Simon Wessely and Michael Sharpe in The Lancet (“Functional somatic syndromes: one or many?”: Lancet 1999:354:936-939) and she quotes with seeming approval Professors Wessely and Sharpe: “The existence of specific somatic syndromes is largely an artefact of medical specialisation”.

Apart from the Lancet article to which she refers, Dr McCartney will doubtless be aware of Wessely’s views on ME/CFS, fibromyalgia (FM), Gulf War Syndrome (GWS), the Camelford water poisoning catastrophe, the effects of chronic low-dose organophosphate (OP) poisoning and the adverse effects of mobile phones, since Wessely has not been reticent in publicising his views. He is certain that such disorders do not exist and that people who claim to suffer from them are deluding themselves because, he says, they are actually suffering from a mental (somatisation) disorder which, to quote Dr McCartney, is “the phenomenon of translating mental distress into physical symptoms”. Wessely is certain that such symptoms are merely “the modern preoccupation with the state of our environment” and that they occur in “a few individuals with pre-existing somatisation disorders (and are) then diverted to fall in line with the prevailing (“disease”). Future investigations of environmental incidents should recall that social and cultural factors are as important as medical ones”  (The Legend of Camelford.  Anthony S David and Simon C Wessely.  Journal of Psychosomatic Research 1995:39:1:1-9 --- see below).

The denial of the very existence of such disorders has become Wessely’s trade-mark.

It was captured in the New Statesman almost a decade ago when in February 1999 Ziauddin Sardar wrote “Ill-defined notions”: “When is someone sick, really sick?  Who decides?  By what criteria?  The only thing that is certain is that you are only ill when someone says you are ill.  Consider syndromes.  Once this was a name for a collection of symptoms for which no clear cause had yet been found.  Now it stands for a bunch of symptoms lacking even the security of certainty that they are actually there.  Most notorious is ‘chronic fatigue syndrome’, known as ‘ME’.  Horror stories abound of people whom the psychiatric experts considered just to be faking. The same can be said of Gulf War syndrome. Even though 400 veterans have actually died and some 5,000 are suffering from illnesses related to Gulf War syndrome, the syndrome does not officially exist. Wessely has been arguing that ME is a largely self-induced ailment that can be cured by the exercise programme on offer at his clinic.  Recently he published the results of ‘the most definitive study’ of Gulf War syndrome in the Lancet.  It concluded – surprise, surprise – that there is no such thing as Gulf War syndrome.  Clearly, Wessely is a follower of Groucho Marx: ‘Whatever it is, I deny it’ ”.

These are profoundly serious issues in which Professor Wessely seems to have been shown to be completely wrong, yet no-where has it been possible to find a retraction of, let alone an apology for, the incalculable damage that many people believe his misinformed opinions and policies have caused.

Although psychiatric disorders are diagnosed on opinion and not on a definitive diagnostic test, Professor Wessely demands “evidence-based medicine” supported by a definitive test and specific biomarkers before he will accept the reality of ME/CFS.  Whilst there is as yet no specific diagnostic test, there is an abundance of biomarkers which support the diagnosis, but Professor Wessely continues his determined and sustained denial and dismissal of this scientific evidence that clearly proves him to be wrong.

As Philip Steer, Emeritus Professor, Imperial College, London, asks in the current issue of the British Medical Journal: “Could strict adherence to evidence-based practice be harmful to patients?” and he notes that: “‘Conviction politicians’ may be popular, but conviction doctors are potentially dangerous” (BMJ 2008:336:673).

Of even more concern is the fact that, despite having been shown to be so wrong about, for example, the Camelford disaster, Gulf War syndrome, the dangers of mobile phones, the nature of IBS, the nature of fibromyalgia and the nature of ME/CFS (for evidence, see below), Professor Wessely’s influence over Government policy continues unabated.

The influence of his team in the NICE Guideline on “CFS/ME” featured in the 2007 R&D (Research & Development) annual reports by NHS organisations in England, in which the South London and Maudsley NHS Trust stated in section 2A (“Examples of impact on health and social care”): “We begin by summarising key achievements and follow with six examples that illustrate the impact of our research”.

 The section on “Chronic Fatigue Syndrome” boasts: “In October 2006 NHS Plus published Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline. It was accompanied by two additional leaflets, one for Health Care professionals and one for employers. This report was heavily influenced by research carried out at our Chronic Fatigue (sic) Unit. The NICE CFS/ME guideline also includes priority recommendations to which our research, led by Trudie Chalder and colleagues, has contributed: ‘When the adult or child’s main goal is to return to normal activities, then the therapies of first choice should be CBT or GET because there is good evidence of benefit for this condition in mild to moderately affected adults and some evidence in mild to moderately affected children’. As a result of our research we have developed our chronic fatigue syndrome service to include treatment at home. In addition we now offer telephone treatment routinely after demonstrating its effectiveness”.
ME/CFS

On 18th March 2008 The Daily Telegraph carried an item entitled “ME: ‘Invisible disease’ is now easier to read” by Bob Ward, who reported on the work of Dr Jonathan Kerr of St George’s University of London (published in the Journal of Clinical Pathology and to be presented at an ME Research UK [MERUK] biomedical conference at the University of Cambridge on 6th May 2008 [and also at the Invest in ME International ME/CFS Conference 2008 in London on 23rd May 2008]). The article pointed out that Kerr’s team has identified 88 genes that produce different levels of proteins and other molecules in ME/CFS compared with controls.  In 2005 Kerr carried out a complex analysis and found that patients with ME/CFS can be divided into seven clinical sub-types according to specific gene combinations and the severity of symptoms.  The most severely affected patients had 71of the 88 gene abnormalities.  In his follow-up paper to which the Telegraph article referred, Kerr’s earlier work was confirmed: (J Clin Pathol 2007: doi:10.1136/jcp.2007.053553):  “In this study, for each CFS/ME subtype, we determined those genes whose expression differed significantly from that of normal blood donors.  Genomic analysis was then related to clinical data for each CFS/ME subtype. Genomic analysis revealed some common (neurological, haematological, cancer) and some distinct (metabolic, endocrine, cardiovascular, immunological, inflammatory) disease associations among the subtypes. It is particularly interesting that in these genomically derived subtypes, there were distinct clinical syndromes, as would be expected in a disease with a biological basis”.

Other researchers have noted that patients with ME/CFS can have “a genetic predisposition to an immunomodulatory response of an inflammatory nature, probably secondary to one or more environmental insults” (N Carlo-Stella et al. Clin Exp Rheumatol 2006:24(2):179-182).

One would think that such evidence would lead to a change in attitude by Wessely School psychiatrists towards ME/CFS, but as has been noted countless times by many people, nothing seems to stop Wessely’s influence on Government policy: a current example is the forthcoming conference on “CFS” to be held at The Royal Society of Medicine on 28th April 2008, about which Dr Derek Enlander from New York wrote on 21st March 2008 to the Editor of the Daily Telegraph:  “Your article on gene research in ME was a breath of fresh air in the stale atmosphere of UK Government funded research.  Over the years it has been shown to be a physical disease. The cause is obscure (and) this obscurity has been masterfully used by psychiatrists to claim that the disease is a manifestation of a psychiatric condition.  What arrogance! The Royal Society of Medicine plays to this theme by running a conference on ME/CFS.  The speakers are dwelling mainly on psychiatry – rather peculiar for a Society of Medicine. As far as I know the RSM has not noted these physical aspects.  The Government through NICE continues to waste money on proven bad methods of treatment which, in a large number of cases, cause relapse.  Surely, by now, the Government should be embarrassed”.

That ME/CFS is not a somatisation disorder is now beyond doubt because there is overwhelming evidence confirming it to be a multi-system organic disorder in which there is disruption of virtually every system in the body (for evidence, see http://www.meresearch.org.uk/information/researchdbase/index.html and http://www.meactionuk.org.uk -- between them, these sites contain over 3,000 published papers demonstrating that ME/CFS is not a psychiatric disorder). The item published on 18th March 2008 in The Daily Telegraph to which Dr Enlander referred above was indeed a breath of fresh air. As noted by Dr John Greensmith in his response: “There has been ample research evidence for M.E. as a discrete illness since 1956 and it has been endorsed by the WHO as a neurological illness since 1969, yet the Government’s advisers, who are dominated by psychiatrists, have tampered with the M.E. entry in the British version of the WHO handbook (though it remains untouched in other countries) and have recommended two treatments on the basis of questionable research evidence, one of which, cognitive behavioural therapy (CBT) has no lasting benefit for people with M.E. and the other, graded exercise therapy (GET) may leave some patients irrecoverably worse.  They say that they do not believe that M.E. is ‘all in the mind’ (but) since most patients are treated by psychiatrists, using treatments developed for psychiatric illnesses, most often in psychiatric units of hospitals, it is hard to think how otherwise they would treat them if they did believe it was of psychiatric origin.  The situation does not look set to change. Indeed, a Royal Society of Medicine conference to be held on 28th April 2008, to which selected delegates have been invited and others told that they should not attend, is expected to recommend that this unproven service should be expanded” (drjohngreensmith@mefreeforall.org ).

Nancy Klimas, Professor of Medicine at the University of Miami and an international expert on ME/CFS, affirmed: “Our patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society”  (AACFS In-coming Presidential Address:  Co-Cure 21st March 2005).

In January 2008, Klimas went on record: “As an immunologist, I once would have said (ME)CFS is clearly an immune dysfunction state, while an endocrinologist would have called attention to the adrenal gland irregularities, and a specialist in the autonomic nervous system would be convinced (ME)CFS is all about blood pressure abnormalities. Given what we’ve discovered about the illness, I now tell people (ME)CFS is all of these things.  We know that (ME)CFS has identifiable biologic underpinnings because we now have research documenting a number of pathophysiological processes involving the brain, the immune system, the neuroendocrine system and the autonomic nervous system”  (Historical perspective.  Nancy Klimas. In:  “Defining Moments – 20 years of making CFS History”, published by the CFIDS Association of America, January 2008).

 It is regrettable that such pronouncements do not receive anything like the publicity that Professor Wessely’s pronouncements receive.

The latest evidence demonstrating the key finding that there is a low-grade inflammatory response in ME/CFS was published on 21st March 2008 in Clinical Science (VA Spence et al: Clinical Science 2008:114(8):561-566); this important paper adds to the existing body of scientific knowledge about ME/CFS that shows excessive cytokine production, disruption of the HPA axis and dysfunction of the autonomic nervous system, none of which can credibly be attributed to a behavioural disorder that is amenable to psychotherapy.

Professor Wessely and other members of the “Wessely School” simply ignore all this scientific evidence that proves them wrong and they remain committed to their own unshakable beliefs, which many people believe have resulted in unnecessary suffering of innumerable sick people.

Fibromyalgia

Just as he dismisses ME/CFS as a somatisation disorder, Professor Wessely likewise asserts that fibromyalgia (FM) also is a somatisation disorder – indeed, he asserts that it is the same somatisation disorder (Lancet 1999:354:936-939).  He clearly believes this, but where is his evidence?  There is none.

The scientific evidence, especially the more recent evidence, continues to mount and it does not support Professor Wessely’s beliefs.  He, however, rejects this substantial body of evidence that he is wrong.

The WHO classifies FM as a discrete disorder in ICD-10 at M79 under soft tissue disorders, not as a somatisation disorder.

The Mayo Clinic recently published “Fibromyalgia myths: The truth about 9 common myths”, which stated “Fibromyalgia is a specific diagnosis”  (http://www.mayoclinic.com/health/fibromyalgia/AR00056 ).

Illustrations of research findings in FM include the following:

In 1997 it was shown that levels of somatomedin C are lower in FM patients (AL Bennett et al. J Psychiat Res 1997:31:1:91-96).

In 1998 researchers showed that levels of Substance P are elevated in FM patients (Evengaard B et al. Pain 1998:78:2:153-155).

In 2003 it was shown that endothelin-1 is raised in FM patients (Pache M et al. Rheumatology 2003:42:493-494).

Research in 2005 indicated that FM is the result of internal biochemical imbalances that cause the physical symptoms (Co-Cure MED: 2nd January 2005: Fibromyalgia: new insights into a Misunderstood Ailment).

Different research in 2005 found elevated N(epsilon)-carboxymethyllysine levels in muscular tissue and in serum of patients with FM, with more intensive staining in the interstitial connective tissue of fibromyalgic muscles (Ruster M et al. Scand J Rheumatol 2005:34(6):460-463).

Again in 2005, more serious abnormalities were demonstrated by histologic studies particularly on electron microscopy, revealing disorganisation of Z bands and abnormalities in the number and shape of mitochondria: biochemical studies and P31 magnetic resonance spectroscopy showed inconstant abnormalities of ATP and phosphocreatine levels.  The authors noted that “Mitochondrial abnormalities, reduced capillary circulation and thickened capillary endothelium may result in decreased availability of oxygen and impaired oxidative phosphorylation as well as ATP synthesis” and commented that these abnormalities do not seem to be the consequences of de-conditioning (Le Goff P.  Joint Bone Spine 2005, November 9th).

In 2006, an important review in the Annals of the New York Academy of Sciences (Sarzi-Puttini P et al, Ann N Y Accad Sci 2006:1069:109-117) demonstrated orthostatic intolerance in FM, suggesting underlying abnormalities in cardiovascular neural regulation: “Research suggests that various components of the central nervous system are involved, including the HPA axis, pain-processing pathways, and the autonomic nervous system”

Again in 2006, research showed a greater prevalence of FM in HTLV-1 (human T cell lymphotrophic virus) infected individuals, suggesting that FM may be associated with this viral infection (Cruz BA et al: J Rheumatol: 2006:33(11):2300-2303).

In 2007, researchers at Yale University School of Medicine showed muscle hypoperfusion induced by regional vasomotor dysregulation in FM, noting that this vasoconstriction in muscle would lead to low-level ischaemia and its metabolic sequelae (Katz DL et al. Med Hypotheses 2007: March 19th).

More research into FM in 2007 demonstrated bladder symptomatology (Brand K et al. Clin Rheumatol 2007: May 3rd).

Further research in 2007 showed that autoimmune thyroiditis is present in an elevated percentage of FM patients and that patients with thyroid autoimmunity showed a higher percentage of dry eyes, burning or pain with urination, allodynia, blurred vision and sore throat (Bazzichi L et al. Clin Rheumatol 2007: May 9th).

In 2007, Bazzichi et al also showed evidence of abnormal levels of cytokines in FM: “The higher levels of cytokines found in FM patients suggest the presence of an inflammatory response system (IRS) and highlight a parallel between the clinical symptoms and biochemical data”  (Clin Exp Rheumatol 2007:25(2):225-230).

Another paper in 2007 revealed a conspicuous pattern of altered brain morphology, suggesting that FM is associated with structural changes in the central nervous system of patients (Schmidt-Wilcke T et al.  Pain: 2007: June 21st).

In January 2008 researchers provided compelling evidence of a demyelinating polyneuropathy in FM, with electrodiagnostic  (EDX) evidence of both polyneuropathy and demyelination.  The authors concluded that 33% of FM patients have clinical and EDX findings of chronic inflammatory demyelinating polyneuropathy / CIDP. (Caro XJ et al.  Rheumatology (Oxford) 2008:47(2):208-211).

In February 2008 researchers from McGill University, Montreal, Canada, presented evidence that “neurotransmitter studies show that FM patients have abnormalities in dopaminergic, opioidergic, and serotonergic systems” and that “studies of brain anatomy show structural differences between the brains of FM patients and healthy individuals” (Schweinhardt P et al. Neuroscientist 2008: February 12th).

Also in 2008, in a blinded study, skin biopsy samples showed electron microscopic evidence of unusual patterns of unmyelinated nerve fibres as well as associated Schwann cells, which the researchers considered may contribute to the lower pain threshold seen in FM patients (Kim SH et al.  Clin Rheumatol 2008:27(3):407-411).

In a study published in March 2008, US researchers noted that previously, functional magnetic resonance imaging (fMRI) had shown that the insula displays augmented activity in FM, which means that neurons in FM patients are more active in this part of the brain. This linked to their own findings that pain decreased when levels of the brain molecule glutamate went down, glutamate being a neurotransmitter that conveys information between neurons in the nervous system (Clauw D et al.  Arthritis and Rheumatism 2008:58:3).

Such research findings cannot rationally be dismissed, yet Wessely et al still insist that fibromyalgia is a somatisation disorder and they have deliberately included FM patients in the Medical Research Council’s behavioural intervention trials on patients with “CFS/ME” in which “Wessely School” psychiatrists are the investigators, a diagnostic inaccuracy that would seem to make a mockery of the MRC’s claim that it funds only studies of the highest scientific calibre, especially as in July 2004 a Minister of State (Dr Stephen Ladyman MP) made it known at a House of Commons All Party Parliamentary Group on FM that doctors were to be offered financial incentives to persuade patients with fibromyalgia to enter these MRC trials.

Gulf War Syndrome

From even before 1996, the time when he and fellow psychiatrist Anthony David were awarded $1million (£666,000) by the US Department of Defence in a Pentagon-funded study to investigate Gulf War illness  among UK veterans (BMJ1997:314:95), Wessely continually denied the existence of Gulf War Syndrome.

In their official report on GWS published in the Lancet in January 1999 (Catherine Unwin et al. Lancet 1999:353:169-178), Wessely et al concluded that there is no such thing as Gulf War Syndrome and that the pathway of such illness could be the “perceived” risk of chemical attack, and that it was this “psychological” effect that might be contributing to the ill-health of Gulf War veterans.

In October that same year a study carried out by the well-respected Rand Corporation for the US Defense Department did not support Wessely’s conclusions.  As a result of this two-year study by Dr Beatrice Golomb, the Penatgon changed its policy and admitted that there could be a link with GWS and the use of pyridostigmine bromide (PB, or anti-nerve gas) tablets which the UK, US and Canadian troops were forced to take during the first (1991) conflict in the Gulf.

In his testimony to the Gulf War Illnesses Public Inquiry held at the Palace of Westminster in 2004 and chaired by The Rt Hon The Lord Lloyd of Berwick, Robert Haley, Professor and Director of the Division of Epidemiology and Preventative Medicine at the University of Texas South Western Medical Centre, Dallas, an acknowledged world authority on the nature and causes of neurological disease in Gulf War veterans, said of Wessely et al:

“Studies using nonspecific definitions of Gulf War neurological syndrome are biased toward finding negative results.  Early in the history of Gulf War illness research, around 1993, a decision was made in the government to the effect that ‘there is no Gulf War syndrome’, and this led to pressure on researchers who wanted government funding not to use a case definition of the illness in their research.   Without at least a provisional case definition, however, it is virtually impossible to design studies that will elucidate the nature of the illness, or illnesses, and connect them with causes.           

“The most important example of the unproductive use of a nonspecific case definition concocted was the series of studies from the Kings College London group.  In place of a case definition describing the disease that veterans were complaining of, they defined Gulf War illness as having a score of greater than 72.2 on the SF-36 questionnaire, which measures functional impairment regardless of the cause.  This case definition essentially counted veterans as having Gulf War illness if they had any condition that caused them to feel bad.  Consequently, many veterans with diseases other than Gulf War neurological syndrome that made them feel bad were mistakenly counted as cases, and conversely, many with typical symptoms of Gulf War neurological syndrome but who were not very ill with it were not counted as cases.  This severe degree of bidirectional misclassification has caused all studies from the Kings College London group to reach spuriously negative conclusions”.

Professor Haley also provided evidence (against Professor Wessely’s studies) that: “Studies using nonspecific measures of nerve agent exposure are biased toward finding negative results”.

Wessely told the Inquiry: “The Gulf war syndrome debate is really just of academic importance” but Lord Lloyd (a former law lord) said there was “every reason” to accept the existence of a “Gulf War Syndrome”  (The Independent Public Inquiry on Gulf War Illness. Report published on 17th November 2004).

In March 2008, The US National Academy of Sciences published another report by Dr Beatrice Golomb (of the University of California, San Diego, and Chief Scientist to the US Congress-appointed Committee on Gulf War Illnesses); this report found evidence linking the symptoms experienced by the Gulf War Veterans – including muscle and joint pain, rashes and breathing problems – to a particular class of chemicals, specifically to the anti-nerve gas agent given to the troops, to the pesticides used to control sand-flies, and to the nerve gas sarin.  Dr Golomb told Reuters that:  “Convergent evidence now strongly links a class of chemicals – acetylcholinesterase  inhibitors – to illness in Gulf War veterans”.  She said that a lot of attention had been given to psychological factors, but that “psychological stressors are inadequate to account for the excess illness seen”  (http://www.bbc.co.uk/1/hi/health/7288902.stm ).  The Proceedings of the National Academy of Sciences is specific: “Increasing evidence suggests excessive illness in Persian Gulf War veterans can be explained partly by exposure to organophosphate and carbamate acetylcholinesterase inhibitors, including pyridostigmine bromide (PB), pesticides and nerve agents (and) this exposure may be causally linked to excess health problems in Gulf War veterans” (Proc. Natl. Acad. Sci. USA, 10.1073/pnas.0711986105).

This study was reported in The Economist (War of nerves. 13th March 2008), which also reported Professor Wessely’s comments about these irrefutable findings: “This may encourage sick veterans that a cause of their suffering could finally be found, but Simon Wessely, a professor at the Institute of Psychiatry’s centre for military health research, is sceptical.  He says that the review is ‘an opinion piece that continues a line of argument Dr Golomb has put forwards for some time’”.

In a response to The Economist, Malcolm Hooper (Emeritus Professor of Medicinal Chemistry and Chief Scientific Adviser to the UK Gulf War Veterans) wrote: “The casual and dismissive comments by Professor Simon Wessely about the recent review by Professor Beatrice Golomb that makes clear the link with chemicals used in the first Gulf War are unacceptable.  (They are) indicative of the resistance to extensive American research studies that have identified serious damage to the brains of sick soldiers, major heart and cardiovascular disorders, as well as immune, respiratory and neuromuscular disorders, including an excess of motor neurone disease.  Despite no official funding, UK research has found excess osteoporosis and severe endocrine damage in UK veterans.  The neglect of these veterans is shameful.  Golomb’s paper challenges us to seek and speak the truth and to act accordingly”.

It seems strange that Professor Wessely should reject the science reported in the Proceedings of the New York Academy of Sciences (which has an impressive impact factor rating) in favour of his own speculation.

Moreover, it seems that he fails to see that he is doing exactly that of which he accuses Dr Golomb  – i.e. his own view is nothing more than “an opinion piece that continues a line of argument” that he has “put forward for some time”. The big difference that Professor Wessely seems to have missed -- either by accident or by design -- is that Dr Golomb has got actual evidence to support her findings, whereas he has none.
Toxicity of organophosphate and organochlorine compounds

Professor Wessely has a long published record of rejecting the validity of environmental illness (for example: BMJ 1993:307:747-748; Clin & Exp Allergy 1995:25:503-514), particularly illness arising from  exposure to chemicals, and he has apparently commented with seeming satisfaction that in the modern world it is impossible to avoid daily contact with a multiplicity of chemicals.

In numerous publications, he has seemed to disparage and denigrate patients with symptoms of environmental illness, repeating the same message time and again, both in medical journals and in the media:

“These total allergy syndromes are akin to culture-bound syndromes afflicting modern developed societies where sufferers from unexplained symptoms no longer see themselves as possessed by devils or spirits but instead by gases, toxins and viruses” (Clin Exp Allergy 1995:25:503-514).

“In a previous era, spirits and demons oppressed us. Although they have been replaced by our contemporary concern about invisible viruses, chemicals and toxins, the mechanisms of contagious fear remain the same.  To the majority of observers, including most professionals, these symptoms are indeed all in the mind” (NEJM 2000:342:2:129-130).

“The release of poison gas into a crowded Tokyo subway killed 12 people.  Since then there have been  several reports of sudden episodes of panic among crowds of Japanese commuters.  These were probably examples of mass hysteria.  Mass hysteria is far from new. A classic book on the subject has just been reissued.  It is an account of the follies of mass behaviour throughout the ages.  In previous times, mass hysteria would be blamed on demons, spirits and diabolical possession.  Nowadays we are oppressed by equally invisible gases, viruses and toxins”  (“Have you heard?  We are being poisoned”. The Times, 4th July 1995, page 14).

“Like many hospital specialists, I have seen a steady stream of patients with many mysterious symptoms.  The sufferers usually blame their ill health on factors such as solvents, pesticides, pollution, food additives or dental amalgam. Many report exquisite sensitivity to such everyday substances as perfumes, deodorants, tap water and hairspray.  Such people are sometimes labelled as suffering from ‘total allergy syndrome’.  All explanations have much in common.  First, there is no personal blame.  Second, all appear to be modern worries.  Third, all are linked by another modern theme – the immune system in trouble. I doubt it is a coincidence that multiple chemical sensitivity, and total allergy, rose to prominence in parallel with the rise of HIV.  The idea that the immune system might give way because of an invisible external agent is now embedded in popular consciousness.  But just how new are these modern illnesses?  The things that we blame for making us feel ill change over the years.  Medieval man was oppressed by spirits and demons.  Nowadays we blame similar ills on mysterious viruses and allergies (which are) an ever-changing parody of scientific advances of the day. ‘Modern’ illness is far from modern”  (“Sickness of the century.  Simon Wessely sees a connection to fears of the past”.  The Guardian 28th May 1996, page 13).

“ ‘People always believe they are oppressed.  They seize on explanations that are credible and make sense within their world view: 300 years ago, people believed in possession by demons’.  These days, he writes in an editorial (in the New England Journal of Medicine), those demons have been replaced by our ‘concern about invisible viruses, chemicals and toxins’.  So how do you deal with a mass psychogenic / sociogenic illness?  ‘The challenge is to convey the scientific reality without being seen as blaming the victims’, writes Wessely (The Guardian  25th January 2000, pp8-9).

“The threat of chemical and biological weapons could have serious long-term social and psychological consequences, leading to outbreaks of panic-induced illness, according to a leading psychiatrist, Simon Wessely. Outbreaks of mass sociogenic illness are already appearing, (with) worries about reproductive outcomes, such as impaired fertility or damaged babies”  (“Panic could be biggest illness”.  The Guardian, 19th October 2001).

It is indeed impossible to avoid daily contact with chemicals, over 30,000 of which have not been fully evaluated toxicologically, so their combined effects on humans are unknown.  Lindane, an organochlorine pesticide (OCP), was widely used as an insecticide in the farming industry because of the need for ever-increasing food production. The nation (and indeed the world) has been deluged with ever more complex agrochemicals, some of which have now been banned.  DDT was found in the food chain and was banned in the 1970s, but OCPs can still be found in environmental and biological matrices due to their persistence (“Man-Made Chemicals in Food Products”. TNO Report, 2006: Netherlands Organisation for Applied Scientific Research).  These products are not effectively metabolised so they just accumulate in the body.

There have been innumerable items in the press about falling sperm counts and rising cancer levels, as well as the fact that the UK now has the highest incidence of asthma in Europe.

In June 2003 the Royal Commission on Environmental Pollution, chaired by Sir Tom Blundell FRS, FMed Sci, presented its 24th Report “Chemicals in Products” to Parliament by Command of Her Majesty.  It caused a media frenzy.  Some illustrations include the following:

“Thousands of chemicals are being used every day without proper safety tests, exposing the public to a ‘gigantic experiment’ experts warned yesterday.  The potential dangers posed by flame retardants, plastics, glues and even some toothpastes are uncertain, because only 40 of 30,000 chemicals in large-scale use have been tested fully, says the Royal Commission on Environmental Pollution. Because of this, ‘the chemical disasters of the past are likely to be repeated in the future’” (“Chemical timebomb”. Daily Express, 27th June 2003).

“The government is experimenting with people’s lives by failing to test properly tens of thousands of man-made chemicals used in everyday life, according to a leading biochemist who chairs the Royal Commission on environmental pollution”  (“Failure to test chemicals ‘puts lives at risk’ ”. The Guardian, 27th June 2003).

On 22nd April 2004 the Daily Mail carried an item by Robin Yapp, Science Reporter (“Revealed, the toxic chemicals invading our bodies”) in which he wrote: “A huge cocktail of toxic chemicals can be found in every adult’s blood, research revealed yesterday.  Scientists say the chemicals – found in everything from TVs to sofas, cosmetics, to computer screens – are now so widespread in the environment that no-one is likely to escape contamination”.

Concern was expressed that most testing of chemicals is done on individual compounds, but possible syngergistic effects of the compounds in multiple formulated products are generally not tested at all.

In 2005, the Pesticide Action Network UK published “The alternative pesticide residues report:  What the Government doesn’t tell us”.  This report provides striking examples of where the current regulatory system does not appear to protect consumers, particularly in relation to pesticide residues in food, and notes the uncertainties about the impact of pesticides on human health, particularly chronic illnesses, endocrine disruptors and the effect of a ‘cocktail’ of pesticides.

It cannot have been overlooked by Wessely et al that the work of Dr Jonathan Kerr of St Georges, London, has linked ME/CFS to OPs  (J Clin Path 2005:58:826-832).  Kerr et al suggest that patients with (ME)CFS “have reproducible alterations in gene regulation”, noting that “sixteen genes were confirmed as having an expression profile associated with (ME)CFS.  These genes can be grouped according to immune, neuronal, mitochondrial and other functions.  These findings are consistent with previous work showing that patients with (ME)CFS have evidence of immune activation, such as increased number of activated T cells and cytotoxic T cells, and raised circulating cytokine concentrations. NTE (neuropathy target esterase) is a target for organophosphates and chemical warfare agents, both of which may precipitate (ME)CFS. EIF2B4 is a mitochondrial translation initiation factor and one of the EIFB2 family, within which mutations have been shown to be associated with central nervous system hypomyelination and encephalopathy. The involvement of genes from several disparate pathways suggests a complex pathogenesis involving T cell activation and abnormalities of neuronal and mitochondrial function, and suggests possible molecular bases for the recognised contributions of organophosphate exposure and virus infection”.

In his subsequent paper referred to above (J Clin Pathol 2007), Kerr stated: “We have previously documented upregulation of NTE in (ME)CFS.  NTE is the primary site of action of organophosphate (OP) compounds. Exposure to OP compounds may trigger CFS/ME and Gulf War Illness”.

Neuropathy target esterase (NTE) is inhibited by several OP pesticides, chemical warfare agents, lubricants, and plasticisers, leading to OP-induced delayed neuropathy in humans, with over 30,000 cases of human paralysis (Gary Quistad et al. PNAS June 24, 2003:100:13:7983-7987).

Although ostensibly not personally involved in the report of the joint working party of the Royal Colleges of Physicians and Psychiatrists (“Organophosphate sheep dip: clinical aspects of long-term low-dose exposure”; November 1998), Professor Wessely’s influence shines through and a large number of the 85 references are his or those of his close colleagues who share his views. His frequent co-author  -- psychiatrist Anthony David -- was a member of the working party.

Commenting on the composition of the Royal Colleges’ working party, Dr Richard Horton, editor of The Lancet, said: “All together there are ten members, including six professors. A committee with such a  distinguished provenance would seem immune from criticism.  Far from it.  Not one of its members has direct experience of looking after patients exposed to OPs.  The committee’s conclusions are bound to be based on wholly incomplete evidence.  Pompous and complacent scientists are seen to be pompous and complacent”  (Observer Life 3rd August 1997:41).

It is a matter of note that the 1996 findings of neurologist Professor Peter Behan from the University of Glasgow linking ME/CFS to chronic low-dose OP exposure were excluded from the Report of the Royal Colleges, given that Behan found ME/CFS to be clinically identical to chronic low-dose OP exposure and that such OP exposure “in some way prepared the patients for the later development of (ME)CFS”.  Behan reported that the abnormalities found in both ME/CFS and in OP poisoning were “compatible with a decreased responsiveness of CNS type II glucocorticoid receptors, (confirming) the hypothesis of brain steroid receptor resistance in patients with the delayed response to OPs and in (ME)CFS” (J Nutrition & Environmental Medicine 1996:6:341-350).

The Royal Colleges’ Report on OPs predictably recommended that treatment for those who have been exposed to OPs should be cognitive behavioural therapy and anti-depressants and it claimed that a “vicious circle” of self-maintaining symptoms, including “illness beliefs and fears about the meaning of symptoms” perpetuate ill-health. Again predictably, the Report urged against what many would regard as appropriate investigation, claiming that investigations “may bias the consultation towards a narrow physical orientation”.

The Report barely mentioned the problems of anaesthesia for those with OP exposure, an omission which might well have given rise to a charge of scientific misconduct, given that in 1987 the Stationary Office had published a Guidance Note MS17 which unambiguously warned about the dangers of anaesthesia, especially the commonly-used muscle relaxant succinyl choline, in people who have been exposed to OPs. Further, in 1995 The Royal College of Anaesthetists had warned members about the dangers of OP compounds and anaesthesia.

Neither document was mentioned in the Report of the Royal Colleges on OPs.

Despite the large number of papers from both US and UK researchers that show clear links between neurotoxicity and organophosphate pesticides – effects exacerbated by synergistic action with other pesticides – Professor Wessely continues to insist, without any convincing evidence, that there is no link.

This is not science, but opinion wedded to fanciful postulates of somatic illness which are rejected by other psychiatrists.

There is well-established evidence of the neurological toxicity that is well-recognised in the literature, including work from the US National Institutes of Health, from the MRC Toxicology Unit at the University of Leicester, UK and from prestigious institutions such as The Scripps Research Institute, La Jolla, California.

The target enzyme systems involved in the toxicity of these compounds include not only acetylcholinesterase and butyrylesterase but also much more sensitive brain enzymes and neuropathy target esterase which play a role in nerve function and in the development of motor neurone disease (MND).

It is well-known that OPs affect brain esterase enzymes at much lower dosages than those producing significant inhibition of acetlycholinesterase commonly regarded as the target enzymes for OPs.

OP compounds have traditionally been associated with the inhibition of esterase activity (Paul G Richards et al. Molecular Pharmacology 2000:58:3:577-583).

It is widely known that cholinesterase inhibitors such as OPs are commonly used as insecticides and pesticides and the chemically closely-related (and more toxic) organophosphonates are used (and may be stored) in biological warfare agents.

Researchers have demonstrated that the time and exposure levels of these agents have considerable relevance in determining possible brain injury (Lola Roldan-Tapia et al. Neurotoxicology and Teratology 2005:27:259-266).

Low dose exposure to both pesticides and nerve agents gives rise to delayed chronic neurotoxicty (Abou-Donia et al. Archives of Environmental Health 2003:58:484-497).

Abou-Donia and Garrettson have identified auto-antibodies to neuronal proteins as a marker for OP neurotoxicty (Environmental Epidemiology and Toxicology 2000:2:27-41).

It is a matter of public record that the incidence and prevalence of Alzheimer’s disease are increasing rapidly (Pritchard et al. Public Health 2004:118:268-283).

As well as providing a target for the action of pesticides, the cholinergic system plays an important role in the progression of Alzheimer’s disease and there is strong correlation between the severity of the dementia and the cholinergic deficits (Paul G Richards et al.  Molecular Pharmacology 2000:58:3:577-583).

In a paper looking at the neurotoxicity of chronic exposure to moderate levels of pesticides, Kamel et al analysed cross-sectional data from 18,782 individuals over a four year period in relation to 23 neurological symptoms.  Among chemical classes of insecticides, associations were strongest for organophosphates and organochlorines.  Results suggest that neurological symptoms are associated with cumulative exposure to moderate levels of organophosphate and organochlorine insecticides (Freya Kamel et al. Environmental Health Perspectives 2005:113:7:877-882).
Changes in erythrocyte enzymes in humans have been reported after exposure to different pesticides, including OPs, one of which appears to be an important biological indicator of pesticide exposure (Antonio F Hernandez et al. Toxicology Letters 2005:159:13-21).

From just these few illustrations, it is clearly untenable for anyone to claim that symptoms of low-dose OP poisoning are a somatisation disorder.
 
The Camelford catastrophe

Wessely is equally dismissive of the Camelford drinking water contamination, where in July 1988 twenty tonnes of aluminium sulphate were pumped into the drinking water supplies of the Cornish town, resulting in the death of seven people, with 25,000 people suffering serious health effects and with 40,000 animals affected (The Ecologist 1999:20:6:228-233). The death toll has since risen – see The Daily Telegraph, 20th April 2006: “Alzheimer’s fear grips poisoned water town” by Medical Editor Celia Hall. Bone biopsies carried out over six months later showed stainable aluminium. Although noting that some peoples’ hair, skin and nails turned blue, in their paper in the Journal of Psychosomatic Research (The Legend of Camelford: 1995:39:1:1-9) Wessely and his co-author Anthony David were not to be moved: they claimed that it was all mass hysteria (BMJ 1995:311:395) and that the “somatic” symptoms were the result of heightened perception of normal and benign symptoms and irresponsible reporting by the press, though they have not explained by what mechanism hysteria affects animals.

In 1999 it was conclusively shown by Paul Altmann et al that there was objective evidence of considerable organic brain damage compatible with the known effects of exposure to aluminium and that it was this exposure, not anxiety or hysteria, which was the cause of the symptoms exhibited by those who had been exposed to the contaminated water  (BMJ 1999:319:807-811).

More recently, Exley and Esiri described severe cerebral congophilic angiopathy coincident with increased brain aluminium in a resident of Camelford (JNNP 2006: doi:10.1136/jnnp.2005.086553), causing Walter Lukiw, Associate Professor of Neuroscience at Louisiana State University Health Sciences Centre, to note that as over-expression of stress-sensing, pro-inflammatory and pro-apoptotic genes have been observed in aluminium sulphate-induced neurotoxicty, “careful attention should be paid to the neurological status and neuropathological outcome of the thousands of unfortunate victims at Camelford”  (eBMJ, 21st April 2006).

In December 2007, the West Somerset Coroner Michael Rose ordered the police to re-open the Camelford pollution case following allegations of a cover-up (Guardian, 13th December 2007).

Responding to this announcement, Sue Waddle, spokesperson for the charity ME Research UK, a magistrate and the mother of a daughter severely affected by ME wrote to The Guardian on 16th December 2007: “I and many others await with interest the outcome of any police inquiry. A 1995 paper by two psychiatrists asserted that mass hysteria and / or anxiety were responsible for the supposed suffering of those in the Camelford area at the time. (One of these ‘experts’) has also given his expert opinion on many other ‘non-illnesses’ and ‘unfounded health worries’. He happens to be the Government expert on electricity pylons, mobile phone masts, Gulf War Syndrome and myalgic encephalomyelitis”.

The Coroner’s conclusions are still awaited, but clearly the existing evidence does not support Professor Wessely’s beliefs that the Camelford disaster was merely contagious mass hysteria.
Irritable bowel syndrome

Another of Professor Wessely’s targets for somatisation disorder is irritable bowel syndrome or IBS (The Lancet 1999:354:936-939) but the evidence does not support such a model.

The following are illustrative of a wide body of evidence:

At the 68th Annual Scientific Meeting of the American College of Gastroenterology held in 2003 at Baltimore, important findings were presented by lead investigators from the University of Vermont (Peter Moses, Associated Professor of Medicine and Director of Clinical Research in the Digestive Diseases, and Gary Mawe, Professor of Anatomy and Neurobiology): “Serotonin is a critical signalling molecule necessary for normal gut function.  Our finding that key elements of serotonin signalling are changed in IBS lends credibility to the notion that IBS is not simply a psychological or social disorder as was once thought, but instead due to altered gut biochemistry and interactions between the gut and the brain.  Now we have a perspective on molecular changes in the intestines of individuals with IBS that we did not have before.  We identified a significant decrease in the serotonin transporter in cells that form the inner lining of the bowel. Because the transporter is diminished in IBS, serotonin stays around longer, and this can lead to changes in motility, secretion, and sensitivity”  (Ecotoxicology 2003:12 (1-4):345-363).

In 2006, the BMJ Learning programme by a Clinical Research Fellow and a Professor of Medicine and Gastroenterology featured IBS (BMJ 2006:332:280-283).  This programme pointed out that a number of pathophysiological abnormalities can often be identified: “IBS is now clearly understood to be a multifactorial condition, rather than its just being due to psychopathology.  These include motility, visceral sensation, central processing, genetics, inflammation and neurotransmitters”.

At the American Academy of Neurology 59th Annual General Meeting held in Boston in April / May 2007, researchers from Brazil showed that people with inflammatory bowel disease were at risk for subsequent neurological disorders and presented convincing evidence of the link between IBD and peripheral neuropathy: “Based on these results, we believe IBD itself is directly related to the neuropathy and that neuropathy in these patients is much more common than previously thought”.

In ME/CFS specifically, there is evidence that the disorder is accompanied by an increased transloctaion of endotoxins of gram-negative enterobacteria through the gut wall, with signs of activation of the inflammatory response system and IgG3 subclass deficiency (Maes M et al. Neuro Endocrinol Lett 2007:28:6).

Clearly, the out-dated hypothesis that IBS is a psychosomatic disorder has been abandoned by those who fulfil their contractual obligations to keep up-to-date with medical science, yet Professor Wessely et al seem unaware of this progress in medicine.
Mobile phone sensitivity

In 2003 Professor Wessely’s team was awarded a research grant of £405,000 to investigate the psychological and biological effects of mobile phone radiation in healthy subjects and subjects with self-reported mobile phone hypersensitivity. Professor Wessely was Principal Investigator.  The study was expected to last until April 2006.

When this was announced, one astute ME sufferer observed: “That’s one more negative result, then!”.

On 2nd September 2003 the Countess of Mar wrote to Professor George Szmukler, Dean of Psychiatry at the Institute of Psychiatry about Professor Wessely’s involvement in this study:

“As Principal Investigator of the (new) Mobile Phone Research Unit at Kings College Hospital, doubtless (Professor Wessely) is soon to ‘discover’ mobile phones have no biological consequences for human health other than the aberrant beliefs of those using them”.

Perhaps importantly, the study was jointly funded by the Programme Management Committee of the MTHR (Mobile Telecommunications and Health Research programme), which itself is jointly funded by the UK Department of Health and the mobile telecommunications industry.

The study was published on 15th April 2006 in the BMJ (2006:332:886-891).
As widely anticipated, Professor Wessely’s study concluded:  “We found no evidence that self-reported sensitivity to mobile phone signals has a biological basis”.  However, the study also noted: “That symptom severity did increase during exposure is interesting.  These symptoms were not trivial.  Indeed, for some they were so severe that exposures had to be stopped early or the participants withdrew from the study”.
 
Undeterred, the authors still advised: “In terms of their clinical implications, these results do not suggest that attempting to reduce exposure to mobile phone signals will be a useful strategy for patients who report sensitivity to them.  Although such interventions might be actively sought by patients, in the longer term a danger exists that they will reinforce a patient’s view of himself or herself as being sensitive to electromagnetic fields.  Instead it may be better to encourage such patients to test alternative explanations for their symptoms by using cognitive behavioural therapy. The symptoms reported by ‘sensitive’ people may be primarily psychological in origin”.

It is notable that a study from Finland that was published the same year as Professor Wessely’s study came to interesting conclusions, namely, that mobile phones affect brain blood flow: “Mobile phones create a radio-frequency electromagnetic field around them when in use. We studied the effects of a commercial mobile phone on regional cerebral blood flow (rCBF) in healthy humans using positron emission tomography (PET) imaging (in) a double blind, counterbalanced study. Explorative and voxel-based statistical analysis revealed that a mobile phone in operation induces a local decrease in rCBF beneath the antenna in the inferior temporal cortex and an increase in the prefrontal cortex, suggesting that the electromagnetic field (EMF) emitted by a commercial mobile phone affects rCBF in humans.  These results are consistent with the postulation that EMF induces changes in neuronal activity” (Sargo Aalto et al. Journal of Cerebral Blood Flow & Metabolism 2006:26:885-890).

Whilst the Finnish study did not seek to identify hypersensitivity to mobile phones, it did provide actual evidence that they affect brain blood flow.

Arthur Firstenberg is unequivocal:  “The most basic fact about cell phones and cell towers is that they emit microwave radiation; so do wireless computers, cordless phones and their base units.  A cell phone that is on but not in use is also radiating.  It is a fact that we are all being bombarded, day in and day out, whether we use a cell phone or not, by an amount of radiation that is some ten million times as strong as the average natural background.  A cell phone, like a microwave oven, heats you from the inside out, not from the outside in. The presence of albumin in the brain is always a sign that blood vessels have been damaged and that the brain has lost some of its protection.  Researchers have found, consistently for 18 years, (that) microwave radiation, at doses equal to a cell phone’s emissions, causes albumin to be found in brain tissue. In research published in 2003,a single two-hour exposure to a cell phone just once permanently damaged the blood brain barrier. Two minutes on a cell phone disrupts the blood brain barrier; two hours on a cell phone causes permanent brain damage” (Leif G Salford et al.  Environmental Health Perspectives: 2003:111:7:881-883).

Firstenberg continues:  “Diseases that have increased remarkably in the last couple of decades (which) there is good reason to connect with the massive increase in radiation in our environment, include asthma, sleep disorders, multiple sclerosis, ALS, Alzheimer’s disease, fibromyalgia, chronic fatigue syndrome, hypothyroidism, diabetes, malignant melanoma, testicular cancer, and heart attacks and strokes in young people. The literature showing biological effects of microwave radiation is truly enormous, running to tens of thousands of documents.  I am amazed that industry spokespersons are getting away with saying that wireless technology has been proved safe or – just as ridiculous – that there is no evidence of harm.  A 1998 survey by the California Department of Health Services indicated that at that time 120,000 Californians – and by implication one million Americans – were unable to work due to electromagnetic pollution” (California EMF Program:  The Risk Evaluation. 2002).

Firstenberg is clear: “The ranks of these so-called electrically sensitive are swelling in almost every country in the world, marginalized, stigmatised and ignored”.

The full paper can be found at -

http://www.eldoradosun.com/Archives/01-06_issue/Firstenberg.htm .

Wessely et al apparently do not accept such findings, preferring instead to endorse findings of a three-year study at the University of Essex for the UK Health Protection Agency (HPA), which found “Phone mast allergy ‘ in the mind’ ”.  Perhaps it is relevant that, as in the case of Professor Wessely’s study, this study was funded by the Mobile Telecommunications and Health Research programme, a body which itself is funded by industry and Government.
Conclusion

In defiance of the extensive published evidence that ME/CFS and other disorders mentioned above are not psychosomatic, Professor Wessely’s unremitting insistence that they are in reality but one single behavioural disorder seems indefensible.

In April 2000 an Opinion from a leading Queen’s Counsel (who is a member of the House of Lords) was obtained about Professor Wessely’s dogma on ME/CFS. That Opinion is concise:

“On the document you have sent me there is an overwhelming case for the setting up of an immediate independent investigation as to whether the nature, cause and treatment of ME as considered by the Wessely School is acceptable or consistent with good and safe medical practice. There is substantial doubt as to whether such could be the case. It is, of course, open to patients (and) their parents to seek Judicial Review”.

In her letter of 2nd September 2003 to Professor Szmukler referred to above, the Countess of Mar wrote:

“Through his prolific output Professor Wessely has introduced his personal beliefs into the UK medical literature and those beliefs are aimed at changing the perception of ME/CFS held by both medical and lay people. Through the shortcomings of the peer-review system, his personal beliefs have become medical doctrine, effectively turning patients into victims”.

Without doubt, there is substantial evidence in the public domain that Professor Wessely himself has carried out an unremitting campaign of denigration of ME sufferers. One of the most notorious was his involvement with a poll run by the British Medical Journal in 2002 in which doctors were asked to vote on what they considered to be “non-diseases”.  It is understood that it was Professor Wessely himself who nominated ME. Along with big ears and freckles, ME was duly voted a “non-disease” that should be left medically untreated.

It must be due in large part to such disgraceful antics and to the fact that Professor Wessely and other members of the Wessely School are Government advisers on “CFS” that people with ME/CFS are suffering politically-driven health discrimination which is contrary to the Disabled Discrimination Act.

There is a broad body of informed opinion – national and international -- that Professor Wessely belittles other peoples’ work without addressing the issues.

For a detailed exposition of the tactics of dismissal used by the Wessely School, see “The Mental Health Movement: Persecution of Patients? A Consideration of the Role of Professor Simon Wessely and Other Members of the ‘Wessely School’ in the Perception of Myalgic Encephalomyelitis (ME) in the UK.  Briefing Paper for the House of Commons Health Select Committee” by Malcolm Hooper et al http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm

Apart from the Wessely School’s own studies, there is little published evidence to support the notion that CBT actually works in ME/CFS, and their own studies have been the subject of criticism on the grounds that many of their studies are deemed to be methodologically flawed, principally because of the authors’ selection bias  (i.e. they are not studying cases of true ME/CFS, but are then claiming that their results relate to ME/CFS).

For many years Professor Wessely has achieved considerable coverage of his views in the UK media on topics ranging from dental amalgam, “blaming mummy for a bad tummy” “the power of the placebo”, “how long should a sick leave last?”, bogus miracle cures, and total allergy syndrome to RSI (repetitive strain injury), so the national press coverage of the apparently exponential increase in rates of psychosomatic disorder and the alleged efficacy of CBT is substantial, with Professor Wessely being frequently quoted in the broadsheet newspapers.

Also, due in no small measure to Professor Wessely’s apparent control over what gets publicly funded on ME/CFS (perhaps due his previous positions on three MRC Boards and to the fact that “Wessely School” members hold influential positions at the MRC) and what gets published on ME/CFS in the UK (perhaps exercised through his position as a member of the Scientific Advisory Panel to the Science Media Centre which was founded in 1999; it is funded by pharmaceutical companies and operates like a newsroom to promote the views of industry and to launch fierce attacks against those who question them), the medical journals frequently publish highly uncritical assessments of CBT which focus on the few studies which support its use, whilst ignoring those controlled trials which did not find CBT to be effective (and which warned about the dangers of exercising beyond fatigue).

This matter is the subject of an article entitled  “A Subgroup Analysis of Cognitive-Behavioral Treatment Studies” by Fred Friedberg  (JCFS: 1999:5: 3-4:149-159; co-published simultaneously as “Chronic Fatigue Syndrome: Advances in Epidemiologic, Clinical and Basic Science Research (ed) Roberto Patarca-Montero, Haworth Press Inc. 1999).

 Friedberg, clinical professor in the Department of Psychiatry at the State University of New York, made the following cardinal points:

“Several studies of graded activity-oriented cognitive behavioural treatment for (ME)CFS, all conducted in England, have reported dramatic improvements in functioning and substantial reductions in symptomatology.  

“On the other hand, cognitive behavioural interventions conducted in Australia and the United States have not found significant improvements in functioning or(ME)CFS symptoms.

“Furthermore, descriptive studies of CF (chronic fatigue) patients in England, the US and Australia suggest that the (ME)CFS population studied in England shows substantial similarities to depression, somatization or phobia patients, while the US and Australian research samples have been clearly distinguished from primary depression patients and more closely resemble fatiguing neurological illnesses”.

Professor Friedberg notes the “widely divergent clinical presentations” and he notes specifically that because all the apparently successful CBT studies have all been conducted in England, a replication of these findings in a well-designed US study would be necessary before a general recommendation for CBT could be made.

Professor Friedberg’s paper was published almost a decade ago, yet Professor Wessely’s influence in the UK remains undiminished.

In a paper dated 8th March 2008 entitled “The Year of No Compromise” Greg Crowhurst, a health care professional whose wife is one of the most severely affected ME/CFS sufferers in the UK, said the following

“This is a simple summary of the inferred messages underpinning the psychiatric paradigm, currently being heavily promoted in the UK”.

Although written specifically in relation to ME/CFS, the summary applies equally to all disorders designated by Wessely et al as being “medically unexplained” which these psychiatrists assert are Functional Somatic Syndromes (FSS), including the disorders outlined above.  These “Wessely School” psychiatrists in fact believe that ME/CFS, FM, IBS, non-ulcer dyspepsia, pre-menstrual syndrome, chronic pelvic pain, atypical chest pain, “hyperventilation syndrome”, tension headache, temperomandibular joint pain, globus syndrome and multiple chemical sensitivity are but one single psychiatric disorder (Lancet 1999:354:936-939).

Crowhurst’s summary exactly captures the situation in the UK:

“The recommendations:

 

·         do not investigate ME/CFS patients

·         do not provide special facilities for ME/CFS patients other than psychiatric clinics

·         do not offer special training to doctors about the disorder

·         do not offer appropriate medical care for ME/CFS patients

·         do not offer respite care for ME/CFS patients

·         do not offer State benefits for those with ME/CFS

·         do not conduct  biomedical research into the disorder
 

The tactics:

·         the wreaking of  havoc in the lives of ME/CFS patients and their families by the arrogant pursuit of a psychiatric construct of the disorder

·         the attempts  to subvert the international classification of this disorder from neurological to behavioural

·         the propagation of  untruths and falsehoods about the disorder

·         the building of affiliations with corporate industry

·         the insidious infiltration  of all the major institutions

·         the denigration of those with ME

The practices: 

·         the attempt to make "ME" disappear in a sea of chronic fatigue

·         the refusal to see or acknowledge the multiplicity of symptoms

·         the ignoring and misinterpretation of the biomedical evidence

·         the suppression of published findings

·         the vested interests       

The impact:
 

·         the arresting and sectioning of protestors

·         the silencing of ME patients, through being given a psychiatric label

·         the suppression of dissent

·         the labelling of ME patients as the "undeserving sick", as malingerers

·         the forcible removal  of sick children and adults from their homes.

 

“It is poignant how an institutionally supported prejudice against people w