M.E Sufferers Malta News List<![CDATA[Findings by Reno scientists confirmed by U.S. government]]> www.rgj.com

by Lenita Powers

Two Reno scientists, who last year discovered a new infectious human retrovirus they linked to Chronic Fatigue Syndrome, said Monday that their findings have been replicated and confirmed by the U.S. Food and Drug Administration.

Please go to this site to read the whole news article:
http://www.rgj.com/article/20100816/NEWS/100816069/1321]]><![CDATA[PNAS Paper on Virus-Chronic Fatigue Syndrome Link Has Its Own Story]]>http://europe.wsj.com/home-page

WSJ's blog on health and the business of health

By Amy Dockser Marcus

The much-awaited PNAS paper published yesterday (and reported in today’s WSJ) about the discovery of a family of retroviruses in patients with chronic fatigue syndrome came with a backstory — its own editorial explaining the publication process.

Here’s why that was necessary. Earlier in the summer, the WSJ reported that the completed paper, by a team of researchers from the NIH, FDA and Harvard Medical School, contradicted findings of a similar study done by CDC researchers and was being held until the discrepancy could be sussed out.

To read the whole article, please go to:
http://blogs.wsj.com/health/2010/08/24/pnas-paper-on-virus-chronic-fatigue-syndrome-link-has-its-own-story/]]><![CDATA[Virus leads Canadian blood service to ban certain donors]]>http://www.healthzone.ca

by Joseph Hall

An AIDS-like virus that has been linked to chronic fatigue syndrome is causing Canadian blood officials to ban anyone who has suffered from the ailment from making donations.

Please go to this web page to read more:
http://www.healthzone.ca/health/newsfeatures/article/791225--virus-causes-ca]]><![CDATA[Chronic fatigue syndrome linked to 'cancer virus']]>http://www.newscientist.com

by Ewen Callaway

Chronic fatigue syndrome, the debilitating condition once dismissed as "yuppie flu", has been linked to a virus that is also common in people with a certain type of prostate cancer.

It's still not clear if the virus, called XMRV, causes chronic fatigue syndrome (CFS), or is just more common in people with the disorder. But the discovery is sure to reignite the debate over whether CFS is fundamentally a psychological condition or a physiological one.

"It's a contentious area that lies somewhere between medicine and psychiatry," says Simon Wessely, a psychiatrist at King's College London who has been vilified by patient groups for his scepticism of cut-and-dried explanations for CFS and his assertion that psychological factors may play an important role...

To read more, please go to:
http://www.newscientist.com/article/dn17947-chronic-fatigue-syndrome-linked-to-cancer-virus.html?DCMP=OTC-rss&nsref=online-news]]><![CDATA[NICE guideline amended - Action for ME]]> www.afme.org.uk

National Institute for Health and Clinical Excellence (NICE) has published its guidelines on the diagnosis and management of M.E. (myalgic encephalomyelitis / encephalopathy) or chronic fatigue syndrome today, 22 August 2007.

The guideline is published in full, summary and quick reference form and the full guideline (488 pages) is still being analysed. A detailed commentary will be published in due course.

In responding to the shorter NICE summary and reference guide, the trustees of Action for M.E. recognise that the Guideline Development Group (GDG) has taken account of much of the patient evidence supplied during the public consultation on the draft guideline, published last September. This is welcome, as is the emphasis on shared decision-making between patients and healthcare professionals and working in partnership.

From the outset the guideline states, as a key priority, that healthcare professionals should acknowledge the reality and impact of the illness and its symptoms.

The trustees are disappointed to note that the guidance still places undue emphasis on two treatments - cognitive behavioural therapy (CBT) and graded exercise therapy (GET) - for which the underlying evidence is inadequate and unrepresentative. Many patients have reported little or no benefit from CBT and others have experienced seriously adverse effects from GET.

They are also disappointed that the GDG could not agree to recognise the World Health Organisation's classification of M.E. as a neurological illness.

In addition, the summary guideline does not convey or reflect the impact which the illness can have on the lives of those people who are most severely affected by M.E.

Nevertheless the trustees feel that the guidelines represent an opportunity to drive forward improvements in NHS services so long as the right training is given to healthcare professionals and especially GPs. Only this will give them the confidence they need to diagnose the illness and to work in partnership with patients to determine the most appropriate treatment for each individual.

George Armstrong, Chair of trustees, said:
"This guideline could be a landmark in the mainstreaming of M.E. as a legitimate illness. Properly implemented, it should help GPs on the front line to reach a diagnosis and identify pathways of care, treatment and support.

"We will use our connections with patients to monitor rigorously the implementation of the guidelines. As a critical partner we will also work with the NHS to ensure that people with M.E. will receive the most positive and effective forms of care, tailored to their own specific needs and preferences."

Sir Peter Spencer, Chief Executive of Action for M.E., added: "When the draft guideline was published last September, Action for M.E. and other patient groups were united in their belief that CBT and GET should not be recommended as 'treatments of first choice.' NICE has responded by removing this phrase but CBT and GET remain. As a result, aspects of the guideline are problematic."

The guideline acknowledges that more research is needed into the causes of the illness and Action for M.E. calls upon the Government to make a serious investment in research into the aetiology and pathogenesis (development) of this debilitating illness. Only then can the most effective treatments be identified and tested.

Action for M.E. and other patient organisations can play a vital role in implementing the guideline by providing healthcare professionals with information resources and patient experiences which will help to make their training meaningful and patient centred.

The potential for the NICE guidelines to improve practice can only be fully realised if services for people with M.E. are fully funded and we will campaign energetically for a greater level of investment, particularly in those areas that pioneer new models of service delivery that address the position of children and the most severely affected.
]]><![CDATA[Devoted mother charged with attempted murder of paralysed daughter who was bed-ridden for 17 years]]>www.dailymail.co.uk

By Colin Fernandez

A mother was charged yesterday with attempting to kill her paralysed bedridden daughter.

Kay Gilderdale, 54, was the full-time carer of her daughter Lynn, 31, who had suffered from myalgic encephalopathy - also known as ME or chronic fatigue syndrome - for 17 years.

After Lynn was found dead from a suspected morphine overdose last December, Mrs Gilderdale's ex-husband Richard, a former police sergeant, raised the alarm.

Lynn suffered from ME for 17 years and was paralysed by the illness

Mrs Gilderdale - a prominent campaigner for greater understanding of the disease - was arrested two hours later on suspicion of murder and released on bail.

If convicted she could potentially face a maximum sentence of life imprisonment.

After she was arrested, her family issued a statement praising her 'total dedication' to her daughter.

The Crown Prosecution Service's decision to charge her is likely to reignite the debate on mercy killing in this country and will highlight an apparent inconsistency in the law.

Families who take their chronically ill loved ones to die abroad have not faced prosecution in recent years.

In the case of Daniel James, 23, a rugby player who was taken by his parents Mark and Julie to die at the Dignitas Clinic in Switzerland last year, the head of the CPS, Keir Starmer said a prosecution was not in the public interest - even though there was 'sufficient evidence for a realistic prospect of conviction.'

Lynn had been receiving a cocktail of drugs for her debilitating condition which her family believe began after she had a tuberculosis immunisation in 1991.

Before that she had played the piano and clarinet, won prizes for ballet and loved swimming.

But over the years her body became steadily weaker, losing the use of her legs and the ability to speak and had to eat food through a tube.

Since Mrs Gilderdale's arrest her family have stood by her.

In a statement released at the time of Lynn's death, her family 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.'

Before her illness, Lynn loved sports and riding.

Sussex Police have said that Mr Gilderdale, who split from his wife in 2002, and now works in a civilian role is not suspected in any role in his daughter's death.

The couple, who also have a son, Steven, 34, have said their divorce had not been caused by their daughter's illness.

In a statement, police said: 'Kathleen Gilderdale, 54, of Stonegate, has been charged that between December 2 and December 4 2008, she attempted to murder Lynn Gilderdale, who was found dead at her home in Stonegate, near Heathfield, on December 4 last year.

'She has been bailed to appear at Brighton Magistrates' Court on Tuesday next week.']]><![CDATA[CFS patients in UK show no signs of suspect virus]]>http://www.newscientist.com

by Clare Wilson and Ewen Callaway

The theory that chronic fatigue syndrome could be caused by a virus that jumped from mice to people has been dealt a blow by a British study that has found no evidence of the virus in people diagnosed with CFS.

Scientists are also warning people with the condition of the dangers of dosing themselves with antiretroviral drugs.

CFS affects more than a million people in the US and a quarter of a million in the UK. Its symptoms include persistent, severe tiredness, but its cause remains mysterious and contentious.

The debate on its origins took a new twist in October, when DNA from xenotropic murine leukaemia virus-related virus (XMRV) was found in the blood of about two-thirds of 101 people with CFS, compared with just 4 per cent of healthy people (Science, DOI: 10.1126/science.1179052). The researchers, led by Judy Mikovits of the Whittemore Peterson Institute in Reno, Nevada, suggested that XMRV might be causing CFS.

To read the whole article, go to http://www.newscientist.com/article/dn18341-cfs-patients-in-uk-show-no-signs-of-suspect-virus.html

]]><![CDATA[NICE Guideline on ME/CFS - Statement by The ME Association Board of Trustees]]> www.meassociation.org.uk

In September 2006, the National Institute for Health and Clinical Excellence (NICE) Guideline Development Group (GDG) published a draft of their proposed guidance on ME/CFS for consultation. This was the first opportunity for doctors, charities and other stakeholder organisations to read and comment on the proposed guidance.

The reaction from The ME Association, as well as many other ME/CFS charities, was that the proposed guidance was completely unfit for purpose. This was a view that was shared by a number of doctors involved in both clinical care and research into this illness, as well as politicians on the ME All Party Parliamentary Group at Westminster.

Our principal objection to the guidance related to the way in which NICE had failed to accept the conclusion of the World Health Organisation (WHO) that in our current state of knowledge ME/CFS is best classified as a neurological disorder. NICE also failed to refer to any research evidence that supports a neurological causation and they appeared to deliberately omit any of the more serious neurological symptoms that were noted in the Chief Medical Officer's (CMO) report. In fact, any reference to neurological cause, neurological symptomatology, or neurological symptom relief appeared to be a no go area for NICE when it comes to ME/CFS.

As a result, their proposed guidance on management was dominated by the advice that everyone with mild or moderate ME/CFS should be offered cognitive behaviour therapy (CBT) or graded exercise therapy (GET)as a first choice treatment - regardless of their clinical presentation or the stage of their illness.

We pointed out at the time that the evidence base for both of these controversial and costly behavioural therapies remains weak with some published studies finding no benefits at all. We also pointed out that in evidence submitted by patients to the CMO report only 7% found CBT to be "helpful" whereas 67% found CBT had made "no change" and 26% reported that it made their condition "worse". And in the case of GET, 50% found that inappropriate exercise therapy had made their condition "worse". These are very worrying outcomes.

In addition, we pointed out that even if these therapies were anywhere near as successful as was being claimed by NICE, there was no money in the NHS pot to cover the cost of everyone with mild to moderate ME/CFS (a population of around 200,000 according to their own estimate) being treated with a course of 12 to 16 sessions. And where would all the extra properly trained therapists come from?

Our other key reasons for concluding that the draft guidance was unfit for purpose included:

a.  A failure to accept that ME/CFS is a very heterogeneous disorder in relation to both clinical presentation, causation and course - hence a 'one size fits all' approach to management is clearly inappropriate and may even be harmful.
b.  Too much reliance on research data that comes from psychiatrists and insufficient attention to evidence relating to fatigue in neurological disorders.
c.   A relaxation of the clinical criteria for defining the illness - the NICE redefinition requiring only one of the so-called minor symptoms with some characteristic ME/CFS symptoms not even appearing on the new list.
The new NICE definition would bring in even more people with undiagnosed chronic fatigue under the ME/CFS umbrella. This would complicate the picture still further.
d.  A failure to deal with many aspects of symptomatic relief - muscle, joint and neuropathic pain in particular
e.  A failure to properly cover many key aspects of management - eg alternative therapies; benefits; occupational health; nutrition; pregnancy - that are not directly related to symptom control.
f.  A very inadequate guide to the management of relapses (or setbacks - the term used by NICE)
g.  The complexities and multiple problems faced by people with severe ME/CFS being largely ignored.
As a result of an unprecedented volume of critical responses from stakeholders, NICE were forced to abandon their decision to publish the final guidance in April 2007.

The MEA, along with other stakeholders, was informed that the final version would be published on August 22nd 2007. This would be without any further consultation or an opportunity to comment on the content prior to publication.

MEA trustees have now carefully considered the content of the final version.

We welcome some helpful new material at the front which:

a.  States that the symptoms can be as disabling as many other serious physical illnesses.
b.  Emphasises the need for early diagnosis and management.
c.  Makes it clear that patients must be fully informed about the type of treatments being proposed.
d.  States that there should be shared decision making and that patients should not be coerced into taking part in treatment programmes that they are not happy with.

However, the remainder of the guidance has seen very little significant change. And so our key objections remain:

a.  The guidance still fails to accept the WHO classification of ME/CFS as a neurological disorder - a classification that is also accepted by the Department of Health.
b.  The section on diagnostic assessment continues to use a much looser and unvalidated definition for considering a diagnosis of ME/CFS but fails to explain how this should then be narrowed down to confirm the diagnosis.
c.  The advice on management continues to be dominated by the recommendation that everyone with mild to moderate ME/CFS would benefit from trying a course of CBT and GET - which may well be based on the psychosomatic model of ME/CFS where it is maintained by abnormal illness beliefs and behaviour.
d.  There is still very little in the way of additional information on symptomatic relief - pain in particular.
e.  There is still a complete failure to address many key aspects of management.
f.  The key message in the BMJ review about management of a relapse: '...advise patients to maintain physical activity if possible' is not evidence based and may well result in a further exacerbation of symptoms.
g.  The coverage of issues affecting the severely affected remains inadequate - in particular the provision of domiciliary services..
And the shortened version for patients, carers and families contains far too much repetitive waffle that is of little practical value.

NICE were presented with a unique opportunity to provide practical guidance that would help to ensure that people with ME/CFS were offered management advice covering all aspects of the illness that would be acceptable and beneficial. They have failed the task that was set.

People with ME/CFS in England, Wales, Scotland and Northern Ireland urgently require a network of physician led multidisciplinary services based on a biomedical model of causation. Where such services already exist they are much appreciated by patients - as was demonstrated at the July 2007 meeting of the ME All Party Parliamentary Group at Westminster (http://www.meassociation.org.uk/content/view/307 ). They do not want a network of services that offer little more than CBT and GET.

Overall, we must therefore conclude that the NICE guidance remains unfit for purpose. We call for the guidance to be withdrawn and rewritten by a group of health professionals who unambiguously accept that they are dealing with a physical rather than a psychosomatic illness.

ADDITIONAL NOTES

a.. The MEA has organised a public meeting on Saturday 15 September in Peterborough to discuss the NICE guideline. Taking part will be Professor Richard Baker, Chairman of the GDG and other officials from NICE. After the presentation there will be an opportunity to ask questions.

Further details on the MEA website (http://www.meassociation.org.uk ) or in the July issue of ME Essential.

b.. The MEA has just published a fully updated 2007 edition of their own 36 page guidance on research, diagnosis and management. 'ME/CFS/PVFS - An Exploration of the Key Clinical Issues' is written by MEA Medical Adviser Dr Charles Shepherd and Consultant Neurologist Dr Abhijit Chaudhuri.

Copies can be obtained using the pdf literature order form on the MEA website (http://www.meassociation.org.uk).
]]><![CDATA[High Court supports ME treatments that are ineffective or harmful]]>http://www.meassociation.org.uk/content/view/814/161/

The legal challenge to the NICE Guideline on ME/CFS was lost in the High Court today – when it was dismissed by Mr Justice Simon. More details later. Please find The ME Association’s immediate response below.

People with ME/CFS now face a situation where doctors will continue to recommend two forms of treatments that many people with the illness find ineffective or even harmful.

The ME Association is disappointed that the High Court Judicial Review of the NICE Guideline on ME/CFS found in favour of NICE.

Recommendations that two controversial treatments – cognitive behaviour therapy (CBT) and graded exercise treatment (GET) – be offered as front-line treatments for those with mild to moderate forms of the illness remain unchanged.

This is despite the findings of the largest-ever survey of ME patient opinion carried out by The ME Association last year which found that only 26% were helped by CBT – while 56% reported that GET made them feel worse.

The ME Association believe that the two people with ME who took up the legal challenge were fully justified in seeking a court hearing into the processes used by NICE to draw up the Guideline.

Despite the Judicial Review failing to result in withdrawal of these potentially dangerous guidelines, The ME Association maintains that the evidence relating to both clinical and cost effectiveness does not justify the emphasis and optimism being given to these two treatments. NICE’s recommendations cannot be justified by the evidence.

We shall continue to ask NICE to review the contents of what we maintain is a seriously flawed and unhelpful Guideline.

Note to Editors:

For further comment from The ME Association, please contact our Publicity Manager, Tony Britton

Tel: 01406 370293, Mob: 07880 502927

]]><![CDATA[Study Published in PNAS Links CFS to Murine Leukemia Viruses]]> CFIDS Association of America - www.cfids.org

(Updated most recently on August 27, 2010)

The much anticipated report from a group of collaborating researchers at the Food and Drug Administration (FDA), National Institutes of Health (NIH) and Harvard Medical School (HMS) was published online on August 23, 2010 in the Proceedings of the National Academy of Sciences (PNAS). This study reports a strong association with murine leukemia virus-related viruses (MLVs), with 32 of 37 (86.5%) CFS patients testing positive for MLV sequences compared to 3 of 44 (6.8%) of healthy blood donors. The authors state, “Our results clearly support the central argument by Lombardi et al. that MLV-related viruses are associated with CFS and are present in some blood donors.” However, the strains of MLVs detected by this research team are different from the ones reported last year in Science.

To read more, please go to:
http://www.cfids.org/mlv/default.asp

   ]]><![CDATA[Study that 'solves' chronic fatigue syndrome blocked]]>www.independent.co.uk

By Steve Connor, Science Editor

A study that supports the controversial link between chronic fatigue syndrome and a new type of virus has been blocked from being published in a leading scientific journal even though it had been accepted for publication by its editors. The study, by virologists working for the US Government's Food and Drug Administration (FDA), is believed to support earlier findings published last October claiming that patients with the syndrome, also known as ME, are likely to be infected with a virus called XMRV, which some scientists believe may trigger the condition.

However, American government officials have persuaded the journal, the Proceedings of the National Academy of Sciences, to hold off from publishing the scientific paper because it contradicted a second study by other government scientists at the Centres for Disease Control and Prevention (CDC), which like the FDA is also an arm of the US Department of Health and Human Services.

To read the whole article, please go to:
http://www.independent.co.uk/news/science/study-that-solves-chronic-fatigue-syndrome-blocked-2022195.html
]]><![CDATA[Queen's award for ME group]]>http://www.chelmsfordweeklynews.co.uk

A GROUP of volunteers from Stock has been recognised by the Queen.

The Young ME Sufferers Trust, also known as the Tymes Trust, has been chosen to receive the Queen’s Award for Voluntary Service.

To read more, go to:
http://www.chelmsfordweeklynews.co.uk/news/8212492.Queen_s_award_for_ME_grou/
]]><![CDATA[Does X (the Virus, That Is) Mark the Spot in Chronic Fatigue Syndrome?]]>http://europe.wsj.com/home-page

WSJ's blog on health and the business of health

By Amy Dockser Marcus

When it comes to chronic fatigue syndrome, researchers are starting to ask: What’s the role of the virus known as “X”?

One of the confounding aspects of Monday’s PNAS paper that reported finding a family of retroviruses in CFS patients was that none of the viruses appeared to be XMRV, which many scientists have shortened to simply X. (The commentary accompanying the paper inspired this post’s title.)

Researchers led by NIH infectious diseases specialist Harvey Alter found a family of retroviruses called MLV-related viruses in a majority of CFS patients. X is a member of that family. But the Alter team found that the strains of virus in the patients that they tested were closer to another branch of the same family — viruses known as polytropic MLVs (you got it — shortened to “P”) — than to X.

To read the whole article, please go to:
http://blogs.wsj.com/health/2010/08/25/does-x-the-virus-that-is-mark-the-spot-in-chronic-fatigue-syndrome/
]]><![CDATA[Whittemore Peterson Institute: Dr. Bell makes a personal appeal to send funds to WPI to speed progress of research]]>www.prohealth.com

Full article at: http://bit.ly/9ndIyj

from David S. Bell MD, FAAP
Lyndonville, NY 14098

To my friends with ME/CFS,

I would like to put out a personal appeal for funds to be sent to the Whittemore-Peterson Institute (WPI) in order to speed up the progress of the current research. Here is my reading of a very complex situation.

Medical authorities, educational institutions, governmental agencies, and most practicing physicians have disrespected and minimized CFS in just about every way possible, from creating an insulting name for the illness to advising extreme caution in treatment, except cognitive behavioral treatments.

It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty-five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably.

In 1985 an outbreak of CFS hit Lyndonville NY and affected 210 persons, 60 of whom were children. The official response from the CDC and the New York Health Department was that this was mass hysteria. No one talked with a single patient. In 1990 I worked with Dr. Elaine DeFreitas and Dr. Paul Cheney and a retrovirus was found and the material published(1). A second paper had been accepted by PNAS and contained a photograph of C-type retroviral particles from a tissue culture of spinal fluid of one of the children in the Lyndonville outbreak. This paper was suddenly pulled and not published after a couple of flawed negative papers. A complete description of these troubled times is in Osler'sWeb by Hilary Johnson. The funding for our studies was pulled and all work on this abruptly stopped.

I think the same tactics are being employed to hamper the current work on XMRV by the WPI. The WPI is a private organization and, as I understand it, no federal grants or funding has been forthcoming. There have been three negative PCR-only studies, which have established only that CFS cannot to be superficially studied. At this time no study that has attempted to replicate the WPI study has been heard from. Many CFS research organizations have declared publically that "XMRV is a dead issue."

Nothing is farther from the truth. I cannot predict the future, but my fear is that the current political and scientific organizations who do not want to see retroviral involvement will attempt to stifle studies on XMRV in CFS. Huge amounts of money are spent on studies on cognitive therapy, and studies proving that CFS is heterogeneous (you can argue that polio is heterogenous).

We have not heard from the CDC, other than the inappropriate comment that this was not likely to turn out to be anything, made right after the Science paper publication in October 2009. We are now eight months later and not a peep. Maybe they are finding XMRV and want to be very careful. Maybe they haven’t looked and are assuming that this heretical idea will blow away. Eight months? And the Band Played On.

It is possible that thirty other labs are finding XMRV in CFS or that no one else in the world is even looking for it. Science requires that labs do not disclose their findings prior to publication and I agree with this rule. But is the WPI going to be isolated by the scientific community and wither away because of lack of funding? Is XMRV going to become more of the compost of CFS research?

But there is an alternative. We cannot wait ten years for science to grind out its conclusions. Every person in the world who believes that CFS is important should send $10 to the WPI. I plan to send $10 today. It may not be much, but it is a start. There may be 10 million persons in the world with CFS. Let's see, that’s…I need a calculator. May 12 is our day. Let's do this.

After 25 years of work in this field I do not have much. But I have my integrity. I feel that WPI has made an important discovery and I feel they are an ethical organization, they are not padding their pockets. But I also have my fears. And the greatest fear of all is that their discovery may not be appropriately followed up.

For the 9,999,999 other people out there who think CFS is both real and important, send $10 to: Whittemore Peterson Institute, 6600 N. Wingfield Parkway, Sparks, NV 89436.

Thank you.

David S. Bell MD, FAAP

1. DeFreitas E, Hilliard B, Cheney P, Bell D, Kiggundu E, Sankey D, et al. Retroviral sequences related to T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci. 1991;88:2922-6.]]><![CDATA[Unofficial Website for the NICE Guidelines Court case]]>http://www.nicemecourt.co.uk

For supporters who want to make the hearing a success.]]><![CDATA[Chronic fatigue donors face rejection (New Zealand)]]>www.stuff.co.nz

by Kent Atkinson 

New Zealand's blood banks plan to reject donors with a record of chronic fatigue syndrome (CFS).

The move follows research overseas which has raised concerns about the potential for a recently identified virus XMRV to spread through blood transfusions.

To read more, please go to:
http://www.stuff.co.nz/national/health/3607226/Chronic-fatigue-donors-face-rejection]]><![CDATA[£13 test for ‘yuppie flu’]]>A new £13 test that claims to be able to diagnose ME (Myalgic encephalopathy) patients will be presented today at London’s Invest in ME conference. 

Studies in Australia had shown that between 60 and 70 per cent of sufferers have large numbers of bacteria called enterococci and streptococchi in their gut.

Prof Kenny De Meirleir, from Vrije University, in Brussels, who created the new test, said that these bacteria, in combination with metals like mercury, create high levels of a gas, Hydrogen Sulphate, in the body.

This then limits the body's ability to produce energy and creates a build-up of acid which muscles find difficult to break down.

Prof De Meirleir, who has seen a positive result in 80 to 90 per cent of patients said: ‘If you do not have this bacteria, you do not have ME.’

He believes that many patients could be treated with a combination of a change in diet, probiotics and antibiotics.

The test will be available from the website of the manufacturers, Protea Biopharma, from Monday.

Myalgic encephalopathy (ME), also known as Chronic Fatigue Syndrome, and dubbed ‘yuppie flu’ can leave sufferers bedridden for years.
   
The condition affects around 250,000 people in Britain, is twice as common in women than men, and typically affects patients between the ages of 20 and 40.]]><![CDATA[Prosecuting suicide-death mother Kay Gilderdale 'in public interest']]>http://www.independent.co.uk

By Jack Doyle and Tom Pugh, Press Association

http://www.independent.co.uk/news/uk/crime/prosecuting-suicidedeath-mother-kay-gilderdale-in-public-interest-1879470.html

The most senior prosecutor in England and Wales today defended the decision to bring charges against a mother cleared of trying to kill her seriously ill daughter, saying the prosecution was "in the public interest".

Director of Public Prosecutions Keir Starmer QC said he was satisfied there was enough evidence against Kay Gilderdale to provide a "realistic prospect of conviction" for attempted murder.

He said he "fully respected" the not guilty verdict and said Mrs Gilderdale was a "devoted mother who acted out of love and devotion" for her daughter Lynn.

But he said putting the case before a jury was in the public interest because of the evidence and because of the seriousness of the allegation.

Mrs Gilderdale was cleared by a jury at Lewes Crown Court yesterday and given a conditional discharge for assisting suicide, which she admitted.

The judge in the case, Mr Justice Bean, praised the jury for returning the verdict and questioned whether the prosecution had been worthwhile.

The 55-year-old mother from Stonegate in East Sussex gave her daughter morphine so she could fulfill her wish to end her "unimaginably wretched" life, the court heard.

Miss Gilderdale, 31, was struck down with ME aged 14 and went from living an active life as a teenager to being bedridden and needing 24-hour care.

But after she became unconscious, Mrs Gilderdale went further by injecting a cocktail of drugs and air into her bloodstream.

It was at this point that her conduct passed from assisting suicide to, potentially, attempted murder, Mr Starmer said.

In a statement, the head of the Crown Prosecution Service (CPS) said: "In the case of Mrs Gilderdale, the CPS was satisfied that there was sufficient evidence to provide a realistic prospect of conviction for attempted murder...

"Mrs Gilderdale's conduct, which began as assisted suicide - namely passing morphine to her daughter so that her daughter could commit suicide - progressed to attempted murder when Mrs Gilderdale herself went on to administer morphine and other drugs and to introduce an air embolism to her daughter after her daughter had lost consciousness.

"Assisted suicide involves assisting the victim to take his or her own life.

"Attempted murder is a step further than assisted suicide because it involves attempting to take the victim's life directly. It is a more serious offence.

"In Mrs Gilderdale's case, the jury rejected the allegation of attempted murder and I fully respect the verdict.

"I also recognise that Mrs Gilderdale was a devoted mother who acted out of love and devotion for her daughter.

"But the fact remains that where the Crown Prosecution Service is satisfied that there is evidence to support a charge of attempted murder, the seriousness of that charge will very often mean that it is in the public interest to bring a case to court so that a jury can consider the evidence and return their verdict, as they did in this case."

©independent.co.uk




]]><![CDATA[AIDS drugs fight prostate cancer-linked virus, U. scientists say]]>www.sltrib.com

Bloomberg News Service

by Simeon Bennett

AIDS drugs blocked a virus linked to prostate cancer and chronic fatigue syndrome, a study showed.

Merck's Isentress fought the virus, XMRV, more powerfully than 44 other anti-HIV compounds tested against the pathogen in laboratory experiments, according to researchers from the University of Utah and Emory University. GlaxoSmithKline's Retrovir and Gilead Sciences's Viread also prevented XMRV from replicating, according to a statement from Emory Thursday.

To read article, go to:
http://www.sltrib.com/news/ci_14809035]]><![CDATA[Tymes Trust Alert 2009-03 : JUDICIAL REVIEW - THE AFTERMATH]]>Jane Colby FRSA
Executive Director
The Young ME Sufferers Trust
www.tymestrust.org

If you were hoping to chat to me after the Judicial Review of the NICE Guideline on CFS/ME in the Royal Courts of Justice, I apologise. Two consecutive days of getting up before dawn and standing in rush hour trains took its toll, as it must have on all who attended. One day was manageable, but after the second I faded. I sat in a cafe while commuters battled their way home. It's the day after the day after that gets you, isn't it? Not the next day, when you are just washed out and convincing yourself that this is as bad as it gets...

Half-way through the following weekend, I started feeling 'normal', having slept for nine hours. That word 'normal' is instructive. For two days I was a normal commuter, jammed in carriages, like the proverbial sardine. I dealt
well with the steps, steps and more steps - London is a warren of them - but repeatedly lost myself in the court building as I have precious little sense of direction since the ME. I was steered back on track by the Trust's Chair
of Trustees. Once, I worriedly queried our route: 'I've never been down this corridor before...' Wrong! And despite how much fitter I have become over these past few years, my store of energy ran out like the Thames with the plug pulled.

We now know that NICE has won the case. I feel for Kevin Short and Doug Fraser, the two committed and courageous patients who mounted this legal challenge. It was right that the Guideline was challenged and I count it a privilege to have provided Witness Statements at their request. Until we have proper recognition of classic ME (see The Brief 2009-1 to be published shortly) any official body would do well to understand that patients will not easily lie down and submit to what they sincerely believe to be misguided treatment  recommendations being issued to their doctors.

The case may be over, but the problem remains. To quote the ME Association:
'People with ME/CFS now face a situation where doctors will continue to recommend two forms of treatments that many people with the illness find ineffective or even harmful.'

The Judicial Review has highlighted serious differences between patient charities. Almost all supported the legal challenge. Action for ME and AYME did not. Their outspoken backing for NICE has gone down like a lead balloon with the wider ME community. In 2004 I was invited to address the Cross-Party Group in the Scottish Parliament. In the course of my speech I showed how patient groups who are too concerned to avoid rocking the boat with the medical establishment end up compromising themselves. I gave clear examples of where that had happened. In the aftermath, after a crisis meeting of the ME Alliance (now superceded by Forward-ME) all Alliance members, including the Trust, got together to produce a joint report 'ME Diagnosis: Delay Harms Health.' It now looks as if 2009 will have to be another year of plain speaking.

Copyright (c) 2008 The Young ME Sufferers Trust]]><![CDATA[ME/CFS -Ban on Blood Donation (EMEA)]]>European ME Alliance
Call for Europe-Wide Ban on Blood Donation from People Diagnosed With ME/CFS

After Canada, Australia and (in all probability) New Zealand have prohibited people who have been diagnosed with ME/CFS from donating blood the European ME Alliance (EMEA) has written to European health ministers and Chief Medical officers requesting that a similar ban be placed in European countries. EMEA have also requested more funding for biomedical research into ME/CFS and again invited Health ministers and Chief Medical Officers in Europe to a meeting in London on 23rd May 2010 to discuss ME/CFS.

To read more, please go to:

http://www.euro-me.org/news-Q22010-005.htm]]><![CDATA[Prof Basant Puri Study - Help needed for ME Biomedical Brain Studies]]>EXTREMELY URGENT

Calling all physically fit carers, friends and relatives of ME patients. Your help is very urgently needed and may be of great assistance to the UK ME community.

Professor Basant Puri urgently needs 10 PHYSICALLY FIT individuals between the ages of 18 to 55 to contact him concerning participation in his current ME/CFS biomedical brain studies on ME/CFS patients.

These individuals will act as healthy `control-subjects' in his study and must not have ME/CFS or have had any major illness. They will attend Hammersmith Hospital on ONE of two dates in London (Sunday 3 August OR Sunday 10 August 2008) for MRI brain-imaging, cognitive function tests and an EEG.

Candidates must not have any metal implants in their body in order to go through the MRI scanner: most dental work is safe in this respect but needs to be mentioned to Professor Puri to be verified. Participants who have worked with grinding metals/sparks must also mention this. There is also space for one more properly diagnosed ME patient to participate in the study on one of these dates.

Participants will need to fund their own travel costs but there is ample parking available in the Hammersmith Hospital car park.

Please do NOT contact me about this matter but please do contact Professor Puri direct as soon as you can for full details if you can help/participate. His email address is: basant.puri@csc.mrc.ac.uk

It is very important for the ME community that this work is completed as soon as possible and that these study slots are filled. PLEASE HELP. Treat yourself to an interesting trip to London in aid of a good cause!

Many thanks indeed.

Kev Short.
Anglia ME Action.]]><![CDATA[Norwich man loses ME court fight]]>Norwich Evening News 24 - www.eveningnews24.co.uk

A graduate from Norwich and his fellow ME sufferer have lost their battle for different types of medical treatment to be available on the NHS.

Kevin Short, 47, a former engineer from Norwich, has had his complaints dismissed as misconceived by a High Court judge. He was fighting alongside Douglas Fraser, a former professional concert pianist, from London.

Mr Short has had myalgic encephalomyelitis, or ME, since the 1980s and has problems with mobility. He has been campaigning for years to end the misconception that it is “yuppie flu”, and says that it is a physical not a psychological condition.

Mr Short and Mr Fraser had argued that the National Institute for Health and Clinical Excellence (Nice) had made “irrational and perverse” restrictions on treatments available for ME sufferers. It recommends cognitive behaviour therapy and graded exercise treatment for those with mild to moderate forms of the illness, which some sufferers say makes them worse. They want to see alternatives such as adrenal support supplements, antiviral treatment, diet modulation and vitamin and mineral supplements.

But today the judge rejected argument on behalf of two victims of the debilitating illness that decisions made by a panel of experts were tainted by bias or the appearance of bias.

In a strongly-worded postscript to his judgment, Mr Justice Simon said the allegations made against panel members were not only damaging to them but “may cause health professionals to hesitate before they involve themselves in this area of medicine”.

He said: “A perception that this is an area of medicine where contrary views are not to be voiced, and where scientific inquiry is to be limited, is damaging to science and harmful to patients.”

Such allegations might deter people from serving on the Guideline Development Group, the panel which reports to Nice, he said.

A spokesman for the ME Association said: “People with ME and chronic fatigue syndrome now face a situation where doctors will continue to recommend two forms of treatments that many people with the illness find ineffective or even harmful.

“The ME Association believe that the two people with ME who took up the legal challenge were fully justified in seeking a court hearing into the processes used by NICE to draw up the guideline…We shall continue to ask NICE to review the contents of what we maintain is a seriously flawed and unhelpful guideline.”]]><![CDATA[M.E. sufferers relief at biggest UK Charity statement]]> http://www.afme.org.uk/news.asp?newsid=812

Action for ME's statement: Complex Somatic Symptom Disorder

Action for M.E.'s statement to the American Psychiatric Association in relation to the possibility of M.E./CFS being classified as a psychiatric disorder:

Action for M.E. would like to thank the American Psychiatric Association’s for the opportunity to comment on the the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

We were gravely concerned and alarmed to hear of the possibility of CFS/ME being classified as a psychiatric disorder, based on comments made in their Work Group on somatoform disorders.

As the largest by far CFS/ME charity in the UK, Action for M.E. would stress that CFS/M.E. is a long-term and disabling physical illness. M.E. is classified by the World Health Organisation in ICD 10 G93.3 as a neurological disorder. There is a large and growing body of evidence from scientific research and from clinicians which supports this position.

We oppose any attempt to classify CFS/M.E. as a psychiatric disorder either explicitly or implicitly.]]><![CDATA[Study Links Chronic Fatigue to Virus Class]]>www.nytimes.com

By David Tuller

When the journal Science published an attention-grabbing study last fall linking chronic fatigue syndrome to a recently discovered retrovirus, many experts remained skeptical — especially after four other studies found no such association.

Now a second research team has reported a link between the fatigue syndrome and the same class of virus, a category known as MLV-related viruses. In a paper published Monday by The Proceedings of the National Academy of Sciences, scientists found gene sequences from several MLV-related viruses in blood cells from 32 out of 37 chronic-fatigue patients but only 3 of 44 healthy ones.

To read the whole article, go to:
http://www.nytimes.com/2010/08/24/health/research/24fatigue.html?_r=2
]]><![CDATA[Invisible Illness Awareness Week Brings Together Thousands Who “Get it”]]>MEDIA RELEASE - http://invisibleillness.wordpress.com

Living with an invisible illness can cause heartache and bitterness when one feels no one understands the significance of the illness. Invisible Illness Week provides that validation that people with invisible diseases often seek.

San Diego, CA — 08/27/2008 — While we assume that most people are generally healthy, you may be surprised to find out that an alarming nearly 1 in 2 people in the United States live with a chronic illness. So why is it that most of us don’t even know when a friend or co-worker is dealing with diabetes, heart disease, lupus, or chronic fatigue syndrome? Because, according to the U.S. Census, about 96% of people have invisible illnesses.

National Invisible Chronic Illness Awareness Week is being held this year, September 8-14, 2008. It’s a secular event sponsored by Rest Ministries, the largest Christian organization that serves the chronically ill. Visit the invisible illness awareness campaign’s web site at www.invisibleillnessblog.org . You can be encouraged through dozens of articles, including daily guest bloggers, find ideas to get involved in the outreach, and goodies to help promote awareness, from silicone bracelets to brochures. Tired of those looks when you park in a handicapped spot? Be sure to pick up a license plate or bumper sticker.

The focal point of the awareness campaign is September 8-12 (M-F) during which 20 telephone seminars will be held on a variety of topics and are open to anyone. Topics may also be of interest to those with loved-ones who have an illness. Some seminars include:

- Assess Yourself: Find the Job You Desire and Can Do Despite Illness Limitations

- The Civil Rights of Patients with Invisible Chronic Illnesses

- Overcoming Self-Defeating Behaviors

- Secrets of Paying for Medical Care

- How to Get Paid to Blog

- After the Diagnosis: The Journey Beyond

The theme this year is “Hope Can Grow From The Soil of Illness.”

Lisa Copen, 39, began National Invisible Chronic Illness Awareness Week in 2002 as she continuously witnessed hundreds of people emotionally hurting just because they felt as though no one “got it.” Lisa has lived with rheumatoid arthritis and fibromyalgia for fifteen years and understands how validating it can be to just have one friend who you don’t have to explain everything to.

“Though there are hundreds of illnesses represented, and large differences in symptoms and pain levels, none of that matters more than feeling like someone understands you. When our best friends and family members are skeptical about our disease, it can be that last straw that sets us off into a spiraling depression.”

She says, “We plan to unite the millions of people who live with chronic pain and illness by offering an oasis of hope and understanding, as well as helpful information and practical tools to live the best life possible.”

Through the guest bloggers of Invisible Illness Week, to 20 seminars that supply tools to ensure that one is cared for–both body and soul–National Invisible Chronic Illness Awareness Week is succeeding in meeting that goal.

Find out more information and receive daily updates at http://www.invisibleillnessblog.org]]><![CDATA[ME pair lose NHS treatment appeal]]> BBC NEWS - http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/7943863.stm

Two ME patients have lost a High Court appeal against what they claimed was an "unfair and irrational" approach by the NHS to their condition.

The judicial review was brought by Kevin Short, from Norwich, and London-based Douglas Fraser.

They argued the NHS was wrong to place so much emphasis on psychological rather than medical therapies.

But a judge dismissed their allegations that current therapies were harmful to some with myalgic encephalomyelitis.

Lawyers for the two men had argued that guidance issued by the National Institute for Health and Clinical Excellence (NICE), restricted the range of treatment available.

Professor Peter Littlejohn, NICE's public health director of the National Institute for Health and Clinical Excellence welcomed the decision.

He said: "We are pleased to have won convincingly on all counts in this case - this judgment is a welcome endorsement of the rigorous methods we use to produce our guidelines.

"This result is very good news for the thousands of people with ME, who can continue to benefit from evidence-based diagnosis, management and care for this disabling condition."

“ We're delighted that this issue is now closed ”
Professor Peter Littlejohns, NICE
The guidance issued in August 2007 related to ME and chronic fatigue syndrome, which affect over 200,000 across the country.

Experts are divided over the severity and best way to treat the conditions - and whether they are indeed two separate illnesses.

NICE recommends cognitive behavioural therapy (CBT), a form of counselling, and planned activity programme known as graded exercise therapy (GET) as front-line treatments.

But the two men told the High Court that such therapies can actually be harmful to people with ME in particular.

They said there should be more emphasis placed on drug treatments, arguing ME can lead to cardio-vascular problems and severe joint pain.

Professor Littlejohns said: "The judgment acknowledges the robust procedures that NICE follows in ensuring that its guidance is independent, evidence-based and fit for purpose.

"We're delighted that this issue is now closed."

© BBC MMIX]]><![CDATA[Mother cleared of trying to murder sick daughter]]> var articleheadline = "Mother cleared of trying to murder sick daughter"; The Independent UK - http://www.independent.co.uk

By Tom Pugh, Press Association

http://www.independent.co.uk/news/uk/crime/mother-cleared-of-trying-to-murder-sick-daughter-1878570.html

A mother was found not guilty today of attempting to murder her bed-ridden daughter by giving her morphine and a cocktail of drugs

Bridget Kathleen Gilderdale, known as Kay, had already admitted aiding and abetting the suicide of 31-year-old Lynn Gilderdale at the family bungalow.

She was given a 12-month conditional discharge for assisting the suicide.

The jury returned its verdict after deliberating for less than two hours.

Cries were heard from the public gallery as the not guilty verdict was read by the foreman.

Mr Justice Bean said: "I do not normally comment on the verdicts of juries but in this case their decision, if I may say so, shows that common sense, decency and humanity which makes jury trials so important in a case of this kind.

"There is no dispute that you were a caring and loving mother and that you considered that you were acting in the best interests of your daughter."

The judge added that she acted selflessly and with exemplary devotion for 17 years.

Jurors heard she crushed up pills and fed them through her daughter's nasal tube, handed her morphine and injected three syringes of air into her vein after she made a failed suicide bid.

Gilderdale, 55, initially tried to stop her daughter ending her life following a 17-year battle with the chronic fatigue illness ME but backed down after she said: "I want the pain to go."

Lewes Crown Court was told she was a loving and devoted mother to her daughter, who was struck down by ME at the age of 14 and needed round-the-clock care at her home in Stonegate, near Heathfield, East Sussex.

Miss Gilderdale, a once active, sporty and musical girl, led an "unimaginably wretched" life in her later years.

She was paralysed from the waist down, unable to speak, eat or drink and was fed through a tube.

Communication to her parents, who were divorced but remained supportive of her, was through a form of sign language they devised themselves.

She was bed-bound, socially isolated, unable to sit up and developed suicidal thoughts, which she published on an online forum for people suffering from illnesses.

She had attempted suicide in the past, had drafted a "living will", placed a Do Not Resuscitate note on her medical records and considered ending her life at Dignitas, the Swiss-based assisted suicide clinic.

In the early hours of December 3 2008, she took an overdose of morphine by injecting the pain-relieving medicine directly into her vein, according to Gilderdale's own account to the family GP, Dr Jane Woodgate, on the morning of the death.

When she realised that the dosage was not high enough, Miss Gilderdale called out to her mother, who then spent around an hour trying to persuade her not to press ahead with killing herself.

But after telling her mother that she wanted the "pain to go" and that she did not want to go on, she set about, over the course of 30 hours, helping her end her life, the trial heard.

Gilderdale handed her two syringes of morphine, consisting of 210mg each, which her daughter administered herself through her Hickman line directly into her vein.

Hours later, at about 6am, Gilderdale felt that the morphine had not achieved her daughter's aim of killing herself and searched the house for tablets, fearing that she would be brain-damaged.

These pills were crushed using a pestle and mortar and then inserted into her daughter's nasogastric tube.

Evidence from Sussex Police found that during the period until her death, Gilderdale trawled the internet for details on drug overdoses and euthanasia.

Following "two or three" more doses of morphine, three syringes of air were pumped into her Hickman line with the intention of causing air embolisms, it was alleged.

Miss Gilderdale died at 7.10am on December 4, with only her mother present. A post-mortem examination at the Conquest Hospital in Hastings found the cause of death was morphine toxicity.

Gilderdale's ex-husband, Richard Gilderdale, told the court he discovered his daughter had died after he received a text message from his former wife, saying: "Please can you come now. Be careful. Don't rush."

When he received the message, he knew what had happened, he told the court.

He said he could never imagine his ex-wife trying to kill their daughter, saying she gave up work without regret and rarely took a holiday.

Describing Gilderdale's reaction to the death, he said: "Her world had come to an end, she was crestfallen, heartbroken - everything you could describe about somebody who had been to hell and back."

Miss Gilderdale had attempted to kill herself before in mid-2007 with a morphine overdose, but her father walked into her bedroom to find her sleepy.

Retired Sussex Police officer Mr Gilderdale said Gilderdale, whom he divorced in around 2001, remained positive that she would get better, although he privately thought otherwise.

Despite their marriage split, they remained actively supportive of their daughter.

Throughout the trial, Gilderdale was supported by a large number of family and friends, including her son Steve and her former husband.

She declined to give evidence. Jurors were told that she could not be tried for murder as it was uncertain whether her daughter died from the overdose she gave herself or from that given by her mother.

Standing on the steps of the court, Gilderdale's son, Steve, read a statement praising the verdict.

Flanked by his mother and father, he said: "We believe this not guilty verdict properly reflects the selfless actions my mother took on finding that Lynn had decided to take her own life, to make her daughter's final moments as peaceful and painless as possible.

"These actions exhibit the same qualities of dedication, love and care that mum demonstrated throughout the 17 years of Lynn's illness.

"I'm very proud of her and I hope she will be afforded the peace that she deserves to rebuild her life and finally grieve for the death of her daughter."

The case has drawn parallels with that of Frances Inglis, the mother jailed at the Old Bailey last week for injecting her brain-damaged son with a lethal dose of heroin, and reignited the debate about assisted suicide.

Mr Justice Bean asked prosecutor Sally Howes QC to explain "why it was considered to be in the public interest" to pursue Gilderdale on the attempted murder charge when she had already admitted aiding and abetting her daughter's suicide.

Ms Howes said the prosecution decided at "the highest level" to press on with a jury trial after Gilderdale had told her GP and the police that she had administered an air embolism with the intent to end her daughter's life.

"There was no submission of no case to answer and the matter went to the jury," Ms Howes said.

Defence counsel John Price QC asked the judge to consider an absolute discharge based on interim guidelines by the Director of Public Prosecutions, Keir Starmer QC, who last year outlined 16 "public interest factors" in favour of a prosecution and 13 factors against taking legal action to bring clarity to existing assisted suicide legislation.

The move came after law lords backed multiple sclerosis sufferer Debbie Purdy's call for a policy statement on whether people who help someone commit suicide should be prosecuted.

Mr Price said that if the DPP was handling the case today, in light of the verdict, it would not be considered in the public interest to prosecute.




]]><![CDATA[Potential Risk to Blood Supply Probed]]>XMRV Virus Gets Attention of Health Officials, but It's Unclear if There Is Any Danger The Wall Street Journal - http://online.wsj.com
by Amy Dockser Marcus

An infectious virus linked to two diseases is drawing the attention of public-health officials, who are investigating the potential threat to the nation's blood supply.

Please go to this web page to read more:
http://online.wsj.com/article/SB10001424052702303450704575160081295988608.html?mod=googlenews_wsj]]><![CDATA[ME Research UK - The NICE Clinical Guideline: from content to clinic]]> http://www.meresearch.org.uk/information/publications/niceguideline.html

February 11th and 12th 2009 marked the failure of the legal challenge to the National Institute for Clinical Excellence (NICE) Guideline on CFS/ME (Clinical Guideline 53) at the High Court in London, with Professor Littlejohns of NICE commenting, “"We’re delighted that this issue is now closed"” (read a report on the BBC News website).

The judgment marks the end of a long, intricate and (for the patient–claimants) exhausting process which began with the publication of the Guideline Draft in August 2007. This draft energised patient support groups and ME/CFS charities like nothing in recent memory; their responses were predominantly negative, and most Registered Stakeholders supplied their own detailed critiques of the document (read ME Research UK’s own critique here, pdf 205 KB). These critiques were considered by NICE which, to its credit, made some key alterations to the Guideline in response to them. Yet the final NICE Guideline failed to satisfy a large section of opinion — hence the High Court appeal — and concerns still remain about its real usefulness to patients, estimated by the guideline itself to average 193,000 in the UK.

These concerns can be simply put. First, there is the problem of diagnosis: whichever definition is used, “CFS/ME” is widely recognised to be a very wide diagnostic marquis and to contain different patient groups — and the formation of clinical guidance inevitably raises the question of guidance for what and for whom. Second, because the randomised controlled trial (RCT) evidence upon which NICE puts a premium consists of a small group of mildly positive RCTs on cognitive behavioural therapy (CBT) and graded exercise, the Guideline’s main treatment recommendations concern psychosocial management and coping strategies widely believed to have an adjunctive role to play at best. The view of ME Research UK is that conclusions about efficacy one could draw from this small group of trials are limited (see “The NICE Clinical Guideline: convincing evidence?” in the Spring 2009 issue of Breakthrough, pdf 48 KB).

For these reasons alone, it is entirely possible that the major recommendations of the guideline will not, unfortunately, solve the clinical problem on the ground. Indeed, when Clinical Guideline 53 is placed side by side with other Clinical Guidelines in the NICE pantheon, representing 19 different clinical conditions (see the table in “The NICE Guideline: what's the problem?” in the Spring 2008 issue of Breakthrough, pdf 53 KB), it can be seen that while CBT is postulated to be a main intervention for a range of psychological conditions, ME/CFS is the only physical condition in this list for which the therapy is flagged up as a primary specialist management approach in a NICE guideline. This is a rum business, particularly since Clinical Guideline 53 (full version, page 252) is clear in stating: “"The [Guideline Development Group] did not regard CBT or other behavioural therapies as curative or directed at the underlying disease process, which remains unknown. Rather, such interventions can help some patients cope with the condition and experience improved functioning, and consequently a improved quality of life."”

For the moment at least, arguments over the content of Clinical Guideline 53 are stilled while attention moves to its operational use at the surgery and the clinic. Clinical guidelines are routinely circulated to all NHS primary care trusts, strategic health authorities, GPs and practice nurses in England and Wales, and representative bodies for health services, professional organisations and statutory bodies, so there will be opportunities to examine (in the fullness of time, through audit and outcome studies) the true effectiveness of Clinical Guideline 53, and whether or not it is achieving its stated aims of helping people manage the condition and maintain and extend their capacities.

© 2008 ME Research UK — Charity Number SC036942]]><![CDATA[Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort]]>Please go to this site to read the article in the British Medical Journal (BMJ)- 

http://www.bmj.com/cgi/content/full/340/feb25_1/c1018

]]><![CDATA[Kerr Pulls out of XMRV research]]> Invest in ME (IIME) - http://www.investinme.org

In December 2009 Invest in ME announced its plans to attempt to fund research by Dr Jonathan Kerr. This was in conjunction with the charity ME Solutions and we wished to maximise the opportunities to fund research into ME/CFS. The research project was -

The role of XMRV in modulation of NK cell cytotoxicity and NK cell gene abnormalities in ME/CFS patients and normal blood donors

Please go to this web page to read more:
http://www.investinme.org/IIME%20Biomedical%20Research%202009%2012%2001-X.htm]]><![CDATA[25% ME Group Statement on NICE ME/CFS Guidance Document]]> www.25megroup.org

NICE have finally published their Guidance document on ME/CFS. During this process NICE gave the impression that they had been listening to patients and professionals. It became obvious when the draft document was released that this was not the case and in the main this is apparent in the Final Report that has now been released by NICE.

Many individuals and patient organisation presented detailed submissions to NICE in order to help them to produce a Guidance document that would be informative and useful to patients and those working in relevant professionals fields associated with caring for and supporting those with ME/CFS.

The 25% ME Group is the only ME charity specifically supporting severely affected sufferers of ME (ICD10: G93.3). We represent the interests of severely ill ME patients, many of whom are so ill that they are totally bedridden, some of whom are wholly dependent on carers for the basic functions of daily living and others who are able to leave home in a wheelchair occasionally.

We are very disturbed that the "core therapeutic strategy"
recommended by NICE for the severely affected is that they "should" be offered an "Activity Management Programme ", combining elements of CBT and GET. An "activity-management programme" is not an appropriate 'treatment' recommendation for this severe neurological disease, as it is not a treatment, but merely a management strategy.

Biopsychosocial CBT/GET approaches may be appropriate for patients suffering from idiopathic fatigue (WHO ICD -10-f.48), however they are inappropriate at best and contra-indicated for ME patients (WHO :ICD 10 - G93.3).

ME/CFS is not cured by CBT, and many patient surveys show that CBT, especially if used alongside GET, can be potentially harmful to those who have neurological ME. Even the MRC neuro-ethics committee has expressed concerns over the use of CBT.

The NICE guidelines as a whole more accurately describe patients suffering from idiopathic fatigue, as outlined by the WHO at ICD-10-f48: this endangers the lives of extremely ill and severely disabled people whose disease demands a biomedical approach.

Using vague and minimal criteria to diagnose patients with this illness trivialises' the serious nature of ME and focuses attention on fatigue - a symptom that many people with severe ME may not even notice in the vast range of troublesome and disabling symptoms they experience. Whilst these NICE guidelines are in use, patients with ME will continue to be misidentified, misrepresented and completely side- lined, particularly if their neurological symptoms are severe. Any service recommended then, with a biopsychosocial emphasis, is likely to be dangerous and inappropriate in helping them to deal with their illness.

These guidelines, in not following the WHO classification that this is a neurological disease, are shockingly inadequate. They create a wholly inaccurate picture of this serious disabling neurological and multi-system dysfunction disease and will surely lead to poor and incorrect treatment, continuing isolation and a potential worsening of disability: even people who are mild and moderately affected, after using CBT and GET, may find themselves joining those of us, who are severely affected.

The NICE guidelines as they are should be condemned and abandoned before any harm comes to this already vulnerable and extremely marginalised group of people. The 25% Group cannot support or condone these guidelines, because with our members the disease in question is neurological MyalgicEncephalomyelitis and requires a biomedical response.

The 25% ME GROUP demand that NICE immediately instigate a major rewrite of the guideline. There must be much greater involvement of health care professionals who accept the physical nature of the illness and informed representatives of the patient community. The patients have this illness, their carers and physicians see its debilitating effects, and yet their evidence has been largely ignored. This is contrary to those very principles which NICE agreed to follow.

Chairperson
25% ME GROUP
21 Church Street
Troon
Ayrshire
KA10 6HT]]><![CDATA[Checkout dad beat polio and ME only to fall victim to a yob's random punch]]>
Daily Mail - www.dailymail.co.uk

After a lifetime of debilitating illness, he had finally achieved the happiness he craved.

A childhood polio survivor and long-term ME patient, Kevin Tripp had been given a new lease of life through the birth of his daughter Rianna five years ago.

But his years of painful struggle ended in appalling tragedy when he became the latest victim of Britain's yob culture  -  killed by a single punch after an alleged row over queue-jumping.

Police believe Mr Tripp was wrongly accused of queue-jumping at a supermarket checkout.

Murder suspect Tony Virasami, 37, was remanded into custody at Wimbledon Magistrates' Court yesterday.

Today, his girlfriend Antoinette Richardson, 37, will appear at Sutton Magistrates Court after she was charged with murder last night.

Mr Tripp, a slightly-built former structural engineer, suffered horrendous head injuries in the senseless attack at Sainsbury's in Merton, South-West London, on Tuesday night.

The 57-year-old died early yesterday after a life-support machine was switched off.

Yesterday his long-term partner Josephine James  -  Rianna's mother  -  sobbed uncontrollably outside the family home as a man of 37 appeared in court charged with murder.

More...
 Murder at the checkout: Shopper 'killed in Sainsbury's after queue-jumping row'

His heartbroken daughter simply clutched a cuddly toy.

As they grieved, details emerged of how Mr Tripp had made the most of his life before being killed in front of shoppers and store staff.

His childhood friend Martin Godbold, 57, said: 'I've known Kevin since I was seven. He was a great guy, very clever, interested in everything and always willing to help you out. He suffered from polio as a child and was always very slight. I can't imagine anyone seeing him as a threat.'

Mr Godbold, a retired refrigerator engineer, said he last saw Mr Tripp and his family two weeks ago. 'He was with Rianna, she's very sweet,' he added.

'That little girl was a new lease of life for him. He doted on her and was so excited about her starting school.'

Local Labour MP Siobhain McDonagh said she knew Mr Tripp, both as a constituent and a family friend.

'Kevin was a quiet, self-effacing man,' she said. 'The last thing in the world he would do would be to become involved in anything violent. He just wasn't that sort of guy.

'He lived in our street for more than 20 years. In the past, my parents used to help him do a bit of shopping because he had ME.'

ME or Myalgic Encephalopathy is also known as chronic fatigue syndrome. Patients can feel exhausted by minor exertion, pain, flu-like symptoms and have problems with concentration and sleeping.

In a poignant internet message to fellow victims Mr Tripp described his frustration at falling into serious illness. The father of one revealed how, after having polio as a child, he led an active and fulfiling life before being struck down by ME 20 years ago.

He was made redundant in 1990 and his symptoms quickly worsened, meaning he could not get a job. He had to stop socialising and give up his passion for DIY as well as swimming and squash.

At one point he wrote about his illness: 'My muscles feel like they are borrowed from someone else, they are stiff and achy, and feel poisoned. I get an aching from my brain that permeates my whole body.

'Well, its not all doom and gloom. When you are suffering from a longterm illness, you sort of have to accept it. You stop grieving for the things you can't do.'

In 2003, Mr Tripp's life took a positive turn when he and his longterm partner Josephine James, a legal secretary, had Rianna.

But on Tuesday night he was at the checkout at Sainsbury's when witnesses said they saw a woman customer accuse another shopper of pushing in.

She then allegedly called her boyfriend who was said to have attacked 'the first person he saw'.

Mr Tripp, who witnesses claimed had nothing to do with the queue-jumping incident, was punched and fell heavily. He later died at St George's Hospital in Tooting.

Mr Tripp's partner, 50, and daughter were yesterday collected from their £300,000 terraced home in nearby Colliers Wood by relatives.]]><![CDATA[25% ME Group Response to the ruling concerning the NICE Judicial Review into ME/CFS Guidelines]]>www.25megroup.org

This is certainly a very sad day for everyone with neurological ME. A disease that devastates the lives of sufferers and their carers, a disease that not only strips sufferers of their livelihoods, but that often leaves them totally reliant on carers for their everyday needs.

I am also extremely worried where this will lead in relation to the so called treatment therapies of Cognitive Behavioural Therapy and Graded Exercise Therapy. These treatment s in many cases have caused wide spread problems for ME sufferers. Our Report from 2004 (http://www.investinme.org/Article-257%20NMEA%20NICE.htm see last page) reported serious flaws in the therapies and also the fact that many were not helped and a great deal more were harmed by undertaking these programs. Many of these sufferers were not even severely affected patients before undertaking the therapies!

We have previously quoted that these therapies are flawed when the NICE Guidelines were released: "Patient experience of this serious neurological illness, which affects up to 240,000 people in the UK has been all but ignored in favour of a psychological approach. The illness affects many body systems and their functions, and an estimated 60,000 develop M.E. so severely they become bed or house bound, with others needing to be tube fed".

We stand firmly behind this today, especially in light of this court ruling.

The ME Association also recently undertook a wide scale survey that also highlighted serious problems with these therapies "This is despite the findings of the largest-ever survey of ME patient opinion carried out by The ME Association last year which found that only 26% were helped by CBT - while 56% reported that GET made them feel worse."

We totally condemn NICE in the limited view that they have taken within the Guidelines and feel that much research into neurological ME was sidelined in favour of more mainstream therapies that are more suitable for patients with totally different conditions (i.e. psychological , chronic fatigue etc.)

The 25% ME Group wishes to offer sincere and deep gratitude to the two brave individuals who challenged NICE over these flawed guidelines by taking them to court. Although, the case was lost it does highlight the serious need for research into this disease and we hope that all the efforts to raise awareness of ME will not be lost in this ruling and so we, along with other individuals and like-minded charities who understand the consequences of these flawed NICE Guidelines, will continue to campaign for them to look at the real evidence concerning ICD 10 ME.

Chairman of 25% ME GROUP
www.25megroup.org

25% ME GROUP
21 Church Street
Troon
Ayrshire
KA10 6SQ

enquiry@25megroup.org ]]><![CDATA[Dutch Press release : Positive ‘XMRV-study’ a matter of time]]>http://esme-eu.com

Prague - May 3, 2010. Last October U.S. scientists presented a breakthrough around the research on chronic fatigue syndrome (CFS), which was published in Science. They found traces of the retrovirus XMRV in the blood of CFS patients. Thereafter, three groups of European researchers, including a Dutch group from Nijmegen, couldn’t confirm these findings. However, at the 'Centennial Retrovirus Meeting' in Prague it became clear that the first positive 'replication study' seems only a matter of time.

To read the whole article, please go to:

http://esme-eu.com/news/dutch-press-release-positive-xmrv-study-a-matter-of-time-article340-7.html

]]><![CDATA[Questions & answers regarding retovirus XMRV for ME sufferers]]> http://www.wpinstitute.org/xmrv/xmrv_qa.html]]><![CDATA[Join the ME Banner appeal]]>http://www.nicemecourt.co.uk/ME_BANNER.htm

Anyone following the Judicial Review of the NICE Guidelines into ME, at the Royal Courts of Justice, will be aware of the “Be There By Photo Campaign”, compiled and created by Irene Thorpe and Belfast girl Antoinette Christie. 

   

People with ME who were unable to attend the court where represented in a huge banner outside the Court.  It was a huge success, one which they have been asked to carry on, with other people wishing to add their photo to the banner.

 

They are hoping to continue this and make a huge banner to incorporate as many photos of people with ME as possible so that they do not become invisible and are not forgotten. 

 

They are appealing to as many people with ME as possible to forward their pictures to either Irene or Antoinette – their photos will be added to the banner and used for raising awareness of the plight of people with ME. 

 

Anyone wishing to add their photo can send a photo (jpeg) and a short note of how long they have been ill via email to  renethorp@yahoo.co.uk  or antoinette_christie@yahoo.co.uk.  Alternatively you can send them a photo via Bebo. 

 

So all you sufferers and carers get cracking with those pictures – let the world put a face to the 250,000 people suffering with ME in this country.  We are hoping for at least 1,000 pictures but let’s not stop there!

 

 

]]><![CDATA[Court rejects challenge over ME treatment]]>Glasgow Herald - http://www.theherald.co.uk

by Jonathan Liew

Charities have condemned a court decision to throw out a bid by two ME sufferers to change guidance given to NHS doctors on treating the condition.

Douglas Fraser, a former violinist for the Scottish Philharmonic Orchestra, and Kevin Short, an engineer from Norfolk, argued that the guideline issued by Nice, the England and Wales NHS spending watchdog, unlawfully restricted the range of treatments available.

They claimed that decisions made by Nice were biased, or appeared to be biased, and that this was a view "shared across the ME community".

Mr Fraser and Mr Short, who both suffer from Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome, have had their careers curtailed by the illness.

Guidelines for diagnosis and management of ME were introduced last August and recommended that ME sufferers be treated with cognitive behavioural therapy and graded exercise therapy, in an effort to alleviate symptoms.

Lawyers for the two men complained that Nice's panel of experts had a "predisposition" for recommending the two therapies to the exclusion of other treatments.

However, Mr Justice Simon yesterday cleared Nice of the accusation, rejecting it as "damaging" and "harmful". He said it "may cause health professionals to hesitate before they involve themselves in this area of medicine".

ME charities attacked the outcome, saying the two therapies were largely ineffective and reinforced the view ME was a psychological rather than a physiological disorder.

A survey by the ME Association last year found that only 26% were helped by cognitive behavioural therapy, while 56% reported that graded exercise therapy actually made them feel worse.

Simon Lawrence, chairman of the 25% ME Group, which represents the most severely affected sufferers of ME, said: "This is certainly a very sad day for everyone with neurological ME. Therapies have in many cases caused widespread problems for ME sufferers. We feel that much research into neurological ME was sidelined in favour of more mainstream therapies that are more suitable for patients with totally different conditions."

Nice's guidelines are not automatically applied in Scotland, where recommendations are made by NHS Quality Improvement Scotland.
 
A spokesman for NHS QIS said it did not currently issue official guidelines on treating ME, with decisions left to the discretion of individual doctors. But Helen Brownlie of Scot ME, a Glasgow-based ME support group, said even though Nice guidelines were not binding, doctors in Scotland were influenced by it.

She said: "They were pushing graded exercise therapy, even though there's no evidence for it. I think it's totally misguided."

One ME sufferer from Edinburgh, who did not want to be named, said she had been offered cognitive behavioural therapy and physiotherapy, which had little effect.

She said: "Cognitive behavioural therapy is all psychological - the thinking is that the illness is all in your head, and you just have to try and take control of your own life. They're also quite keen to give you anti-depressants.
 
"I also did a physiotherapy course which wasn't terribly successful."

© 2009 Newsquest (Herald & Times) Limited]]><![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[ME pair appeal unfair NHS rules]]>http://news.bbc.co.uk

Two ME patients are launching a High Court appeal against what they say is an "unfair and irrational" approach by the NHS to their condition.

The judicial review is being brought by Kevin Short, from Norwich, and London-based Douglas Fraser.

They argue the NHS was wrong to place so much emphasis on psychological rather than medical therapies.

But the National Institute for Health and Clinical Excellence said its August 2007 guidance was "robust"

The guidance issued in August 2007 related to ME and chronic fatigue syndrome, which affect over 200,000 across the country.

Experts are divided over the severity and best way to treat the conditions - and whether they are indeed two separate illnesses.

NICE recommended cognitive behavioural therapy (CBT), a form of counselling, and planned activity programme known as graded exercise therapy (GET) as front-line treatments.

But the two men will tell the High Court that such therapies can actually be harmful to people with ME in particular.

They believe there should have been more emphasis placed on drug treatments, arguing ME can lead to cardio-vascular problems and severe joint pain.

The court was packed with other ME sufferers, many of them confined to wheelchairs, as the case opened.

Barrister Jeremy Hyam, representing both men, told the court that while the claim was being brought by just two individuals, their views were shared "across the ME community".

"Literally thousands of sufferers have communicated their support for this challenge," he said.

Ignored treatments

The guidance does call for standard drugs to be used to combat some symptoms, but the campaigners said it ignored anti-viral treatments that could stem the development of problems in the first place.

Solicitor Jamie Beagent, who is representing the pair, said: "There were two key flaws in the decision.

"Firstly, the people who assessed the guidance were weighted in favour of psychological treatments and, secondly, it was irrational and unfair.

"There is little evidence that what has been recommended actually works. NICE has virtually ruled out medical intervention and that is wrong."

The two ME patients have received the backing of the ME Association with a spokesman calling the guidance "unfit for purpose".

But NICE chief executive Andrew Dillon defended the guidance, saying it was "robust" and had been designed to improve care.

"The group considered a range of complex issue in great depth taking full account of the views of patient groups and health professionals."

And he added the court case was "diverting resources away" from NICE's core work.

The hearing is expected to last two days and the guidance will remain in place until the judge gives his verdict.]]><![CDATA[Blogging for Awareness of Invisible Illness Week Unites Thousands]]>MEDIA RELEASE - http://invisibleillness.wordpress.com

Chronic illness statistics are staggering, with nearly 1 in 2 people in the USA living with a chronic condition and, according to U.S. Census Bureau, about 96% of illnesses are invisible. With hundreds of thousands of people on the Internet searching for health information and support, thousands of bloggers now post daily journals about the emotional challenges they live with while facing a daily chronic illness filled with pain.

National Invisible Chronic Illness Awareness Week, September 8-14, 2008, is inviting these blogs to have a substantial role in their awareness campaign. For example, part of their outreach includes over thirty days of guest bloggers as well as bloggers across the internet posting about invisible illness matters. For example, if you have an invisible illness-and a legal handicapped parking placard-you’ve likely faced a few stares and questions if you park in the blue spot since your invisible illness does not require the use of a wheelchair.

All over the internet, bloggers are putting their illness awareness efforts together to join in helping more people become aware of invisible illnesses. They show their support by posting about invisible illness issues, on their own blog. A downloadable badge that says, “I’m blogging for Invisible Illness Awareness Week” can spread the word about their commitment to the cause. Plus, bloggers are also thanked publicly each Friday on the Invisible Illness Week blog, which can give them lots of extra exposure for their own web site. Bloggers can post anytime, but they are also encouraged to specifically post on September 8th to kick off the week.

Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though we live with thousands of different illnesses, we have more in common than not. For example, illness impacts our families, careers, finances and daily living, to name a few. We can all learn from one another and share during this journey.” She adds, “And frankly, people are tired of hearing, ‘But you look so good!’ and they want others to know that their illness is legitimate despite how well they seem to be holding it all together.”

Laurie Edwards is the author of a recently published book called, “Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties.”  She has blogged about her illness since 2006 and says, “When you are a young adult people expect you to put in long hours to establish a career, to jump into the dating world, and to build a life for yourself. But they certainly don’t expect you to be sick. There’s no such thing as ‘too young’ to be sick! That is just one of the many reasons why Invisible Illness Week is so important!”

If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see www.invisibleillness.wordpress.com .  You can also receive updates, participate in surveys, win prizes, and find out more about the telephone workshops at the Invisible Illness Week web site: www.invisibleillness.com.]]><![CDATA[Simple £13 test 'could be used to diagnose patients with ME]]>www.telegraph.co.uk

by Kate Devlin, Medical Correspondent

A simple £13 test could be used to diagnose patients with Myalgic encephalopathy (ME), scientists believe, and potentially offer hopes of treatment for many.

The researchers believe that the condition, thought to affect around 250,000 people in Britain, is triggered by an overabundance of certain bacteria in the gut and a build-up of toxins in the body.

Myalgic encephalopathy (ME), also known as Chronic Fatigue Syndrome, can leave sufferers bedridden for years.
 
Twice as common in women than men, it typically affects patients between the ages of 20 and 40 and common symptoms include severe fatigue, muscle pain, forgetfulness or trouble concentrating and difficulty sleeping.

Once dismissed as "yuppie flu" it has since been recognised as a disease by the Department of Health.

However, confusion has surrounded the cause of the condition, with some doctors believing its roots are viral or psychological.

Studies in Australia have shown that between 60 and 70 per cent of diagnosed patients suffer from large numbers of bacteria called enterococci and streptococchi in their gut.

Prof Kenny De Meirleir, from Vrije University, in Brussels, who created the new test, said that these bacteria, in combination with metals like mercury, stimulate the creation of high levels of a gas, Hydrogen Sulphate, in the body.

This in turn sets off a chain of reactions which limit the body's ability to produce energy, he added, and creates a build-up of acid which muscles find difficult to break down.

In patients with severe symptoms the syndrome can cause large numbers of abnormal proteins in the body, which also inhibit the process of energy conversion, he added.

Prof De Meirleir, who has tried the new test on hundreds of patients, and who will present his findings at the Invest In ME conference in London on Friday, said: "We are seeing a positive result in 80 to 90 per cent of patients sent to us.

"I would say that if you do not have this bacteria, you do not have ME."

Many patients could be treated with a combination of a change in diet, probiotics and antibiotics, to alter the bacteria in their gut, he said.

However, patients with the most severe symptoms remained a "challenge" to treat, he added.

The test, which costs Euro 15 (£13) and will be available from the website of the manufacturers, Protea Biopharma, from Monday, will allow patients to test for the presence of this bacteria by analysing their urine.

Patients who screen positive are advised to see their family doctor.

Dr Charles Shepherd, medical director of the ME Association, said: "This is an interesting scientific observation which needs to be looked at in more detail and verified by independent researchers before we can conclude it is a diagnostic test for this illness."]]><![CDATA[ME virus discovery raises hopes]]>http://news.bbc.co.uk/2/hi/health/8298529.stm

US scientists say they have made a potential breakthrough in understanding what causes the condition known as chronic fatigue syndrome (CFS) or ME.

Their research in the journal, Science, suggests that a single retrovirus known as XMRV does play a role in ME.

They found the virus in 67% of ME patients compared to under 4% of the general population.

But experts cautioned that the study did not conclusively prove a link between XMRV and ME.

ME is a debilitating condition that affects an estimated 17 million people worldwide.

The discovery raises hopes of new treatments for the condition.

Retroviruses are known to cause neurological symptoms, cancer and immunological deficiencies.

Contributing factor

The Whittemore Peterson Institute in Nevada, said they had extracted the DNA from XMRV in the blood of 68 out of 101 patients with the condition.

ME FACTS
# Causes chronic fatigue and muscle pain
# Impairs immune system
# Does not improve with sleep
# More women than men suffer from it
# Condition controversial in 1980's when some medical authorities doubted whether it was a genuine physical illness

Cell culture experiments revealed that the patient-derived XMRV was infectious.

The researchers said these findings raise the possibility that XMRV may be a contributing factor to ME.

XMRV is also known to have a role in some prostate cancers.

Dr Judy Mikovits, who led the study, said: "It's a blood borne pathogen that we contract through body fluids and blood transmission.

"The symptoms of ME - chronic fatigue, immune deficiencies, chronic infections - are what we see with retroviruses.

"This discovery could be a major step in the discovery of vital treatment options for millions of patients."

Tony Britton, of the ME Association said: "This is fascinating work - but it doesn't conclusively prove a link between the XMRV virus and chronic fatigue syndrome or ME.

"Many people with ME/CFS say their illness started after a viral infection, and a number of enteroviruses and herpes viruses have also been implicated in the past.

"ME/CFS is an immensely complex illness, with many possible causes and there are up to 240,000 sufferers in the UK desperate to get better."

Invest in ME are enormously encouraged by the current research which shows a potential new cause for this devastating neurological illness. More importantly it promises a diagnostic test is within reach.

A spokesman for Invest in ME said: "This is a huge step achieved in such a short time and will bring hope to all people with ME and their families.

"We now call on the UK government, the Chief Medical Officer and the Medical Research Council to support our view that only a research strategy based on adequately funded and coordinated biomedical research into ME will succeed in creating treatments and eventually a cure for this devastating neurological illness. "

Dr Richard Grunewald, a consultant neurologist at the Sheffield Teaching Hospitals NHS Foundation Trust who is also on the panel that gives advice to NICE on CFS, said he had reservations about the research.

He said: "The idea that all CFS can be caused by a single virus doesn't sound plausible to most people who work in the field.

"A lot of the symptoms of CFS are not those of a viral infection."

Sir Peter Spencer, chief executive of Action for ME, said: "It is still early days so we are trying not to get too excited but this news is bound to raise high hopes among a large patient group that has been ignored for far too long.

Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/8298529.stm

Published: 2009/10/09 09:11:14 GMT

© BBC MMIX]]><![CDATA[ME link to XMRV Retrovirus Confirmed]]>http://oneworldscam.com

by Kevin English

Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) patients  infected with XMRV Retrovirus CONFIRMED – Peer-Reviewed study confirms  link with XMRV first reported in the journal Science in October 2009.  Blood Bank/Tissue Bank authorities the world over now increasingly move to ban MECFS patients from donating blood/tissues…

To read the whole news article, please go to:
http://oneworldscam.com/?p=7574]]><![CDATA[UK Liberal Democrats promise change in guidelines for ME]]>
To read more, please go to:
http://www.meassociation.org.uk/index.php?option=com_content&task=view&id=457&Itemid=99999999]]><![CDATA[The FDA/NIH/HARVARD “XMRV” Study: The Same Thing, Only Different]]>www.cfscentral.com

The just-released study detects variants of the retrovirus XMRV in most CFS patients.  In addition, nearly 7 percent of the healthy U.S. controls—all of whom are blood donors—test positive, signaling the contamination of the U.S. blood supply.

To read the whole text and discussion on the topic, please go to:
http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html




http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html]]><![CDATA[Retrovirus might be culprit in chronic fatigue syndrome]]> http://www.sciencenews.org/view/generic/id/48157/title/Retrovirus_might_be_culprit_in_chronic_fatigue_syndrome

by Nathan Seppa

People with the condition are much more likely than others to harbor a little-known pathogen

The long, fruitless search for the cause of chronic fatigue syndrome has taken a curious turn. Scientists report online October 8 in Science that an obscure retrovirus shows up in two-thirds of people diagnosed with the condition. The researchers also show the retrovirus can infect human immune cells.

These findings don’t establish that the pathogen, called gammaretrovirus XMRV, causes chronic fatigue, cautions study coauthor Robert Silverman, a molecular biologist at the Lerner Research Institute of the Cleveland Clinic. “Nevertheless, it’s exciting because it is a viable candidate for a cause.”

Roughly 1 to 4 million people in the United States have chronic fatigue syndrome, according to the Centers for Disease Control and Prevention. The condition shows up as mental and physical exhaustion, memory lapses, muscle pain, insomnia, digestive distress and other health problems. Doctors often diagnose chronic fatigue only after ruling out everything else. Its cause is unknown.

In the new study, the researchers tested blood from 101 people with chronic fatigue syndrome and found that 68 were infected with XMRV. When the scientists analyzed blood from 218 healthy people as a control group, only eight had the virus — 4 percent. The study participants lived in various parts of the United States.

“This is a very striking association — two-thirds of the patients,” says John Coffin, a virologist at Tufts University in Boston who wasn’t involved in the study. A 4 percent infection rate in the healthy controls is also substantial, he notes, because it suggests that 10 million people in the United States are harboring this hidden infection.

If the retrovirus indeed is found to cause chronic fatigue, the infected 4 percent in the control group might represent people who have been infected for a short time and haven’t developed symptoms, or who have kept the virus in check, says study coauthor Judy Mikovits, a cell biologist at Whittemore Peterson Institute in Reno and at the University of Nevada, Reno.

Based on its genetic makeup, XMRV arose from a mouse retrovirus that somehow jumped to humans.

Mikovits asserts that the retroviral infection might result in an immune deficiency that leads to chronic fatigue symptoms. Retroviruses are known to attack the immune system, with HIV being the best-known example. In this study, researchers showed that XMRV infected immune cells in the blood.

“This may end the controversy as to whether there is an underlying infection in some cases of chronic fatigue syndrome, but is unlikely to explain all cases,” says internist Dedra Buchwald of the University of Washington in Seattle. Retroviruses can awaken latent viruses already in cells. It is possible that chronic fatigue symptoms are caused not by XMRV but by other viruses that it activates, she says.

Meanwhile, retroviruses harbor pro-growth genes, and some cause the blood cancer leukemia in animals and people. XMRV — or xenotropic murine-leukemia-virus–related virus — itself shows up in some men with prostate cancer, particularly those with aggressive malignancies, another research team reported last month in the Proceedings of the National Academy of Sciences.

Gammaretroviruses, a subset of retroviruses, also cause disease in gibbons, cats and koalas, Silverman says. “XMRV is the first member of this genus of retrovirus to be found in humans,” he notes.

In the new study, the researchers also found hints that the retrovirus is transmitted by blood, as are some other viruses, including HIV. But it’s probably not spreading very fast, because people with chronic fatigue “are too sick to do anything,” Mikovits says.

Further research is under way to fine-tune testing for the retrovirus, and more blood analyses are planned that will clarify its occurrence rate in the general population. Mikovits and her colleagues are investigating already-approved antiretroviral drugs to see if these will benefit people who have chronic fatigue.

Go to link to read comments!


]]><![CDATA[National Institute for Health and Clinical Excellence (NICE) publishes new guideline on ME/CFS - 22nd August 2007]]> PRESS RELEASE
New NICE guideline to improve diagnosis and management of chronic fatigue syndrome/ myalgic encephalomyelitis (or encephalopathy) (CFS/ME) in adults and children is launched today (22 August).

Tel: 020 7067 5900
www.nice.org.uk
Ref : 2007/044

CFS/ME is a relatively common illness, affecting an estimated 193,000 people. The condition can be disabling, involving a complex range of symptoms, the most common being fatigue, but including headaches, sleep disturbance and muscle pain.


The National Institute for Health and Clinical Excellence (NICE) and the National Collaborating Centre for Primary Care have published a clinical guideline on how to effectively diagnose and manage CFS/ME in adults and children.


The guideline provides recommendations to help diagnose and manage the condition, aimed at maintaining, and if possible, gradually extending an individual’s physical capacity. It also highlights the importance of shared decision-making between health professionals and people with CFS/ME, providing therapies suitable to the individual and the individual’s right to refuse or withdraw from any part of their treatment plan without it affecting future care.


Recommendations include:
Diagnosis:

•  If a child or young person under 18 years old has symptoms of possible CFS/ME they should be referred to a paediatrician within 6 weeks of first seeing their doctor about the symptoms.

•  After other possible causes have been excluded, a CFS/ME diagnosis should be made after symptoms have persisted for 4 months in adults, and after 3 months in a child or young person (in consultation with a paediatrician).


Management:

•  An individualised management plan should be developed with the person with CFS/ME and they are in charge of the aims and goals of the overall management plan.

•  Health professionals should provide care in ways suitable for the individual, which may include providing some tests or treatments at home, or support and advice by telephone or email

•  Clinicians should offer advice on managing activity, rest periods, sleep patterns, diet, equipment to help maintain independence like the blue badge, and advice on fitness to work or be in education

•   People with CFS/ME should not be advised to simply ‘go the gym’ or exercise more’ as this may worsen symptoms

•  Cognitive behavioural therapy and/or graded exercise therapy should be offered to people with mild or moderate CFS/ME and provided for those who choose it, as there is the clearest evidence of benefit for these approaches.


Andrew Dillon, Chief Executive at NICE and Executive Lead for the guideline, said: “CFS/ME is a relatively common illness, affecting up to an estimated 250,000 people.


The condition can cause debilitating symptoms, impacting significantly on the lives of those with CFS/ME, and their families and carers. Until now there have been uncertainties about the diagnosis and management of this condition, but this new guideline will help health professionals make an accurate diagnosis, whilst considering other conditions that may be present.


The evidence-based recommendations will also help improve the management of CFS/ME, including advice on ensuring patient-centred care, offering a choice of care options and tailoring therapies to suit the individual.”


Professor Richard Baker, Chair of the Guideline Development Group, GP and Head of the Department of Health Sciences at the University of Leicester, said: “Care for people with CFS/ME has varied widely, and in the worst cases, has left some people with the condition feeling that their illness isn’t recognised by the healthcare system.


The publication of this CFS/ME guideline is an important opportunity to change the current situation for the better, helping both healthcare professionals and individuals by providing clear advice on how best to manage this disabling condition.


The guideline sets standards for all health professionals on the best ways to provide care, drawing upon the expertise of a range of health professionals and patient representatives who understand the particular challenges of diagnosing and managing CFS/ME.”


Dr Esther Crawley, Guideline Development Group member and Consultant Paediatrician, said: “This guideline provides useful advice on how to diagnose children with suspected CFS/ME and makes it clearer when a child or young person should be referred to a specialist CFS/ME service. Although there’s no known drug to treat or cure the condition, clinicians can provide practical help to individuals such as advice on managing activity, rest periods, sleep patterns, diet, equipment to help maintain independence and advice and support with education.


CFS/ME causes symptoms of varying severity, and can be very debilitating in children and young people. We frequently see children who are very severely affected and unable to get out of bed, so I am particularly pleased to see the recommendations for people with severe CFS/ME.


This guideline should ensure that finally children, young people and adults who are severely affected, have their diagnosis and care supported by a CFS/ME specialist, and have access to treatment even if that means that the treatment is provided at home.”


Dr Frederick Nye, Guideline Development Group member and Infectious Disease Consultant Physician said “‘This guideline will help clinicians to diagnose CFS/ME accurately and promptly, so that effective management can be started as early as possible. Although the causes of the condition are still poorly understood, gentle progressive rehabilitation can prevent deterioration and promote recovery.


CBT or graded exercise should be made available for patients with mild or moderately severe illness: both treatments have been shown in clinical trials to control symptoms and improve physical function. However, appropriate safeguards, a step-by-step approach, and a collaborative relationship between therapist and patient are all essential for success. Although all patients want to get better, none should be coerced into accepting any particular form of treatment. Management should always be underpinned by an ethos of joint decision making and informed choice.’”


Mrs Ute Elliot, Guideline Development Group member and patient representative, said: “CFS/ME has had a profound effect on my life, often robbing me of the energy to leave my home, and unable to do the simplest things like making a cup of tea.


It’s important that doctors and other specialists understand how disabling CFS/ME can be, and why it’s vital that people with CFS/ME are treated as individuals as the condition affects each person differently. Based on my experiences with CFS/ME, I was pleased I could contribute my experience to the development of this guideline, and hope that it will improve the help available to people with CFS/ME and their carers.”


About the guidance
1.  The guidance is available at http://www.nice.org.uk/CG53 (from 22 August 2007)

2.  The evidence suggests a population prevalence of at least 0.2– 0.4%, which means that a general practice with a population of 10,000 patients is likely to have at least 20–40 patients with CFS/ME. There is a lack of epidemiological data for England, so based on the suggested prevalence, an estimated 192,799 people have CFS/ME.

3.  Background information:
•  Some people have relatively mild symptoms and can still manage daily activities with additional rest, while others have a serious illness that severely affects their everyday lives and may be housebound. The pattern of a person’s symptoms, and their severity, can vary from day to day, or even in the same day.

•  Most people with CFS/ME will improve over time, and the prognosis in children and young people is more optimistic.

About NICE
4.  NICE is the independent organisation responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health.

5.  NICE produces guidance in three areas of health:
• public health – guidance on the promotion of good health and the prevention of ill health for those working in the NHS, local authorities and the wider public and voluntary sector

•  health technologies – guidance on the use of new and existing medicines, treatments and procedures within the NHS

•  clinical practice – guidance on the appropriate treatment and care of people with specific diseases and conditions within the NHS.

The document can be viewed at  http://guidance.nice.org.uk/CG53]]><![CDATA[Mum admits aiding daughter's suicide]]>http://www.express.co.uk

By Sarah Westcott

A FORMER nurse accused of trying to kill her daughter after watching her battle a serious illness for 17 years yesterday admitted aiding her suicide.

Kathleen Gilderdale, 54, known as Kay, was supported by family and friends as she entered her plea at Lewes Crown Court.

Gilderdale was arrested at her home in Stonegate, East Sussex, following the death of her paralysed and ­bedridden daughter Lynn last year.

She spoke only to confirm her name and enter her plea.

Lynn, 31, died from a suspected morphine overdose on December 4.

Gilderdale denied attempted murder and a further count of aiding and abetting attempted ­suicide.

The pleas were not accepted by the Crown Prosecution Service and a trial will be held on ­January 12.

Gilderdale was the full-time carer of Lynn, who had myalgic encephalopathy, also known as ME or chronic fatigue syndrome.

The mother had worked to campaign for greater awareness of the condition. Judge Richard Brown invited the CPS to drop the other two charges in light of Gilderdale’s guilty plea.

He said: “It strikes me that it may not be in the interests of justice to pursue the other counts when the defendant has pleaded guilty to a substantive count like that.

“It is a serious charge that appears to address exactly what happened.

“Wouldn’t it be better to accept it now rather than let this defendant get tangled up in a messy trial for the sake of some legal mumbo-jumbo?”

But prosecutor Annabel Darlow said the CPS is pushing ahead with all the charges because blood tests may shed some doubt on how Lynn died.

Gilderdale has said her daughter gave herself a huge dose of morphine, which led to her death.

Her family has said Lynn showed “immense bravery” during her battle against ME, enduring constant pain and requiring 24-hour care.]]><![CDATA[The Nice Guidelines - AYME]]> www.ayme.org.uk

Press Release

The largest ME/CFS children's charity welcomes today's publication of the NICE Guidelines which will provide leverage for more services to be offered to patients.

Today it's estimated that only one in ten children in England receives treatment for ME/CFS. The Association of Young People with ME (AYME) says the guidelines now put the onus on Primary Care Trusts to provide quality services administered by professionals with experience of ME/CFS.

"If the NICE guidelines are undermined and discounted, PCTs can use this as a reason not to provide the funding that is so desperately needed. Patient services will disappear or remain non-existent," said Chief Executive of the Association of Young People with ME, Mary-Jane Willows.

ME/CFS services have already disappeared from Hertfordshire and London's St Thomas Hospital because funding was withdrawn. Other services across the country are also facing budget cuts.

"We will be doing patients a great disservice if we don't support these guidelines," added Mrs Willows. "By their nature, consensus documents will not suit everyone. But if the guidelines are used in a positive way they will help us to retain existing ME/CFS services, without which thousands of newly diagnosed patients would go undiagnosed and untreated. This is the problem that has plagued the ME/CFS community to date."]]><![CDATA[Study reignites debate over virus' role in chronic fatigue]]>http://articles.latimes.com

By Thomas H. Maugh II

A team of government scientists found traces of XMRV in 86% of chronic fatigue syndrome patients. But other studies have failed to detect the virus, leading to troublesome discrepancies.

Government scientists have found traces of a mouse-related virus in 86% of patients with chronic fatigue syndrome, a discovery that is likely to reignite the controversy surrounding the virus widely known as XMRV.

Nevada scientists first reported the presence of the virus in chronic fatigue patients in 2009, but at least three subsequent studies failed to detect it. On Monday, however, researchers from three different government agencies said they had found the virus in stored and fresh blood samples.

To read the whole article, please go to:
http://articles.latimes.com/2010/aug/24/science/la-sci-fatigue-virus-20100824

]]><![CDATA[Vigil for M.E Awareness Month 2008]]>
You can also support us by helping to publicise the event. By inviting your family, friends and colleagues to join the vigil or by posting this notice on a notice board, or in a newsletter if you have one, we can expand the circle of people taking part.

With Hope,

Vanessa Mitchell
[admin@vigilformeawareness.org.uk]]]><![CDATA[Scientists develop home-testing kit for ME]]>
Scientists have developed a £13 home-testing kit which they claim will help identify people suffering from myalgic encephalopathy (ME).

The urine test checks for certain bacteria and toxins based on the theory that the illness is strongly linked to those particular strains and a build up of toxins in the body.

Experts are divided on what exactly causes ME, which was dismissed as 'yuppie flu' in the 1980s, but it affects 250,000 people in Britain.

The main symptom of ME is severe fatigue but others include muscle pain, twitching of the muscles, headaches, feeling hot and cold, sleeping problems and bowel or stomach disorders.

Some sufferers believe their illness was triggered by an infection. Other triggers include toxins, some pesticides, vaccinations, major trauma or stress, such as a road traffic accident, pregnancy and surgical operations.

Today, at a conference in London, Professor Kenny de Meirleir, from the University of Brussels, revealed a team have developed a simple urine test to test for the illness.

The scientists say the kit identifies high levels of the chemical hydrogen sulphate, which builds up after antibiotic use or exposure to salmonella infection, and can occur when there is too much exposure to mercury.

Prof de Meirleir's research has shown that around 90% of patients with ME also have an excess of the bacteria enterococcus and streptococcus, which he believes interact with exposure to metals to produce hydrogen sulphate.

The scientist, who treats between 3,000 and 4,000 ME patients a year, said his patients had been shown to excrete high quantities of the metals copper, mercury and nickel, possibly contracted through the environment or food.

The new test, produced by his company Protea Biopharma and available via its website from Monday, will show whether a patient has high levels of hydrogen sulphate. The patient's urine turns a dark colour when mixed with a chemical agent in the test.

'This is a test for a major cause of ME,' he said. 'Anyone with a positive result should talk about it with their GP and get referred to a specialist.'

Prof de Meirleir said mild and moderate types of ME could be treated with probiotics and antibiotics targeted at the enterococcus bacteria.

Patients with severe ME are more difficult to treat but it is possible to restore the normal balance of the gut and remove excess levels of chemicals from the body.

He said his patients had seen their urine and metal tests return to normal following treatment.

Dr Charles Shepherd, medical director of the ME Association, said the findings were interesting but needed further research.

'This is an interesting scientific observation which needs to be looked at in more detail and verified by independent researchers before we can conclude it is a diagnostic test for this illness.

'We have a research fund and we would be interested in testing this hypothesis on other groups of patients.'

Dr Shepherd said it was generally agreed that ME was a three-stage illness, with a possible genetic component.

Viral infections are a major trigger for ME but 'what keeps it going' currently divides the medical community, he said.]]><![CDATA[Invest in ME to fund WPI study of XMRV in UK/European patients]]>http://www.prohealth.com

In December 2009 Invest in ME (www.investinme.org) announced its plans to attempt to fund research by Dr. Jonathan Kerr. This was in conjunction with the charity ME Solutions, and we wished to maximise the opportunities to fund research into ME/CFS. The research project was:

The role of XMRV in modulation of NK cell cytotoxicity and NK cell gene abnormalities in ME/CFS patients and normal blood donors.

Recently Dr Kerr informed us that he was withdrawing the grant application, as a study in which he was involved has shown no XMRV in ME/CFS patients.

This now means that the fund-raising for this particular project will be halted.

Invest in ME have contacted those supporters who have donated funds specifically to aid this particular project and we have offered to refund the donations. We are happy to announce that all our supporters have requested that we retain the funds donated and use them for biomedical research.

To read more about this, please go to the whole article found at this link - http://www.prohealth.com/library/print.cfm?libid=15201]]><![CDATA[Mouse virus link to chronic fatigue is studied]]>www.guardian.co.uk

AP foreign, Thursday August 26 2010

WASHINGTON (AP) — A U.S. government study has uncovered a family of mouse viruses in some people with chronic fatigue syndrome, raising still more questions about whether an infection may play a role in the complicated illness.

Monday's study does not prove that having any of these viruses causes harm, stressed co-author Dr. Harvey Alter of the National Institutes of Health.

But it strengthens suspicions, and the government has additional research under way to determine if the link is real or not.

Meanwhile, a group of French and Canadian scientists said it's time to test whether antiviral medications like those used against HIV might treat at least some people with chronic fatigue.

To read the whole article, please go to:
http://www.guardian.co.uk/world/feedarticle/9237473 ]]><![CDATA[XMRV - TV interview with researchers]]> advertising first.

http://nevadanewsmakers.com/video/nnmstreamb.asp?showID=938]]><![CDATA[Judicial review of NICE Guideline to go ahead]]>
http://www.meassociation.org.uk/content/view/589/70/

STOP PRESS - Mr Justice Cranston ruled in the High Court this afternoon that the application for a judicial review of the NICE clinical guideline into ME/CFS should go forward. The full review, which is expected to last two days, will take place sometime in the autumn. The ME Association will post a  report into today's exploratory hearing tomorrow morning.

This press release was issued a few days ago by Leigh Day & Co, Solicitors

High Court hearing on NICE Judicial Review to take place on June 17th 2008

Patients of a devastating illness, Myalgic Encephalomyelitis (M.E.) have today welcomed the news that there is to be a hearing in the High Court in London on the 17th June to decide whether or not to grant permission for a Judicial Review of NICE guidelines on the illness which is sometimes referred to as CFS/ME.
 
NICE issued their Guideline for doctors in August last year amid protests from patients and medical researchers that they had not followed correct protocols in producing the Guideline. Patient groups fear that some patients could be pressured into accepting treatments which at best may be useless and at worst could cause real harm.
 
The hearing will take place in the High Court at the Royal Courts of Justice on the Strand on 17 June 2008. The hearing is listed to last for half a day and Court will hear legal argument from lawyers representing two ME sufferers as well lawyers for NICE. The precise time and location of the Court room will be published on HM Courts Service website on the afternoon of 16 June.
 
For further information please contact Jamie Beagent at jbeagent@leighday.co.uk]]><![CDATA[CFS 'link' prompts blood donation review (Australia)]]>http://news.smh.com.au

by Danny Rose

Australia's Red Cross Blood Service is reviewing its donation guidelines after Canada halted donations from people who have had chronic fatigue syndrome (CFS).

Canadian authorities took the precautionary step earlier this month, based on US research that linked CFS to a recently identified virus (XMRV) which would be transmissible via infected blood.

Australia's blood service is conducting its own risk analysis. It says existing donor guidelines require people with CFS to defer giving blood until they make a full recovery.

To read the full story, go to:

http://news.smh.com.au/breaking-news-national/cfs-link-prompts-blood-donation-review-20100420-sr25.html ]]><![CDATA[Tanya Harrison's Personal Response to the NICE Guidelines on ME/CFS]]>Tanya Harrison (BRAME)
Patient Representative – GDG on ME/CFS
www.brame.org

Personal Response to the NICE Guidelines on ME/CFS

As you are all now aware, I have resigned from the NICE Guideline Development Group (GDG) on ME/CFS (August 2007). I originally requested that a statement went in the guidelines "Tanya felt unable to agree with the content of these guidelines", as I felt that I could not sign up to the guidelines, but did not want to resign, as I was, and still am, willing to be part of future re.writes/redrafts, which I feel are inevitable. However this option was not available to me, and therefore I felt that I must resign, as I could not sign up to the guidelines. I hope that you will understand that I was not able to make my decision known until today, the date of publication for the guidelines, as I have always adhered to the confidentiality that was expected from being a member of the GDG.

I know that many of you will question why I did not resign from the GDG sooner, but I have stayed to the end, continuing to highlight the patient experience, and hoping that I could try and make even a small difference, a word or sentence that could be extrapolated and used to help us, and I truly tried. Please believe me when I say that I have never fought harder or shouted louder, I have continually presented biomedical and patient evidence to the group. I fought hard to try and get the Canadian Clinical Guidelines/diagnostic criteria accepted, I used the patient evidence supplied to me, and quoted/brought up some of the thousands of research papers that were dismissed by the York Review.

I do believe that many problems stemmed from the scope of the guidelines and York Review. Given that the aetiology and pathogenesis of the condition were not part of the scope these could not be searched for, and subsequently meant that thousands of papers could not be discussed as part of the process. Just one example of this is GET; the question posed by the York team looked for papers on ‘GET and ME/CFS’, it did not however search for papers on ‘Exercise and ME/CFS’, and this meant that the many papers showing the potential harm of exercise on the bodies of people with ME/CFS, and that people with ME/CFS react adversely to exercise were not picked up, and no matter how many times I brought them up in the meetings, I was told that the scope of the guideline meant that they could not be discussed, creating a slanted view on exercise and ME/CFS, with only the papers on GET being able to be discussed.

Some, but not all, of the areas I fought hard for are the following - you can decide on reading the guidelines whether I won these battles:
•    The guidelines to acknowledge that this is a physical, organic, neurological illness. The inclusion of this was vital for both patients and doctors, and by omitting this will do more harm, with more doctors continuing the erroneous belief that this is a psycho-somatic/mental health issue. I also fought hard for the inclusion of the WHO classification (ICD10 G93.3) of ME as a neurological illness, and recognised as such by the Department of Health.

•    For the acknowledgement that there is, at present, no cure, nor is there a management plan which is suitable for all. I am not stating that people do not recover sufficiently to lead a normal life, nor that recovery/improvement is not possible, but that to find a cure we must first understand the underlying condition, until then remission/relapse is always a possibility. Instead of including this vital, and accurate, statement, the erroneous impression is given that GET/CBT can cause people to recover.

•    The guidelines to recommend the widespread/national use of the Canadian Clinical Guidelines on ME/CFS, in particular the diagnostic criteria, which provide a more accurate diagnosis, whilst still allowing people to be managed and monitored who suffer from Idiopathic Chronic Fatigue Syndrome.

•    That early diagnosis is vital, but this must be an accurate diagnosis, after the exclusion of all other conditions.

•    That too many people are mis-diagnosed, which in turn leads to mis-management. I brought up several cases where people who were mis-diagnosed and later died, either through initial mis-diagnosis, mis-management, or the misappropriation of symptoms to ME when they were in fact related to a co-morbid condition.

•    That patients have the right to refuse or withdraw from any part of their care/management plan, without detriment to their care. This was in the CMO report as well but, as everyone knows, was not adhered to in the real world.

•    That patients are a partner in their care plan, and that any tests or management plans are mutually agreed, and individually tailored. Most importantly that the patients’ views are important, that they should be listened to, and believed.

•    That patient evidence is listened to, and respected, particularly for the severely affected and children/young people, for whom there is very little research evidence, apart from patient evidence. I used the 25% Group’s statistics at virtually every meeting – and fought to have these results included in the guidelines.

•    That any recommendation of CBT is based on flawed research, and goes against patient, and research, evidence:

    - That the MRC neuroethics committee has expressed concern about CBT, and states that harm has already been caused.
    - That the majority of patients find CBT unhelpful/harmful, and that person-centred counselling, is the more acceptable form of help in coming to terms and coping with this life changing condition.
    - That ‘illness beliefs’ have no place with this condition. ME/CFS is a debilitating and chronic organic condition – you cannot ‘believe’ yourself better.

•    That any recommendation of GET is based on flawed research, and goes against patient, and research, evidence:

    - There are multiple research papers showing that people with ME react adversely to exercise, and that increasing the cardiac rate, in particular, is extremely dangerous.
    - That patient evidence has shown that the majority of patients find GET unhelpful/harmful, with more than one patient survey showing over half of patients undertaking GET are made worse.
    - That patients find pacing activities to be the more helpful approach to managing their condition.

•    That patients find the bio-medical approach to be the most helpful ie. symptom/pain management, pacing and person-centred counselling – all of which have little or no description in the guidelines.
 
•    That patients not only go through different levels of severity, but also different stages of their illness eg. acute, chronic, recovery; and that how a patient reacts to a management plan, or whether increased rest is needed, is dependent not only on their level of severity but on the stage at which their illness is at.

•    That all patients, but in particular the severely affected, and the long term moderately or severely affected, should undergo regular monitoring and reviewing of their condition, with blood tests routinely done to examine whether any co-morbid blood conditions/nutrient deficiencies are occurring. I also fought for Ferritin, B12 and Folate to be done as standard during diagnosis to pick up underlying anaemias as these are not always indicated by standard blood tests, along with the POTS test.

•    That the severely affected are largely forgotten and invisible. That the numbers seen in the clinics and GP surgeries are just the tip of the iceberg. The reality is a much greater number than those thought, due to this group being housebound/bedridden – most having bounced around medical and social services – they have usually ended up falling through the system.

•    That the severely affected have the right to at least the same level of clinical care as afforded to those who are not severely affected ie. because they are bedbound does not mean that they do not have the right to see a consultant or doctor – home visits should be initiated, along with outreach services, and specialist nurses, this does not mean that the severely affected should be managed the same way, but that they should have access to care as others do, although at a domiciliary or in-patient level. That PCTs do not have the funding or resources to deal with this section of the ME community.
 
•    That the severely affected, in particular the long-term, vitally need regular follow-up care and monitoring, preferably by a specialist consultant/clinician in ME. I constantly highlighted the multiple problems faced when you are a severely affected person with ME, and the specific needs/care needs of this particularly vulnerable group.

•    That the severely affected, and the long term moderately and severely affected, have a complex and chronic multi-organ, multi-system illness, with a high probability of co-morbidity, and that fatalities are a real possibility. I also highlighted personal tragedies I was made aware of, as well as the Jason et al paper, showing that people with ME die approximately 25 years younger from cancer and heart problems. Deaths do happen and they should not be swept under the carpet, but should be highlighted, investigated, learned from, and hopefully, with appropriate monitoring, prevented.

•    The impact that living with ME has, not only on the patient, but also the carer and the family.

•    The urgent need for research into:

    - The bio-medical aetiology and pathogenesis of this chronic and complex organic illness.
    - Sub-grouping – until subgroups are identified and studied we are not going to move much further forward – I constantly highlighted, and sent in the Jason et al paper on sub-grouping.

•    That the cost of CBT/GET as management strategies is not only much higher financially in an immediate sense, when compared to the bio-medical approach, but also over a longer period of time, with any positives seen as being only short-lived, but more importantly, that most patients find these approaches unhelpful/harmful, which will not only cost the health service more through the deterioration of the patients’ health, and the impact that has on their quality of life, but also in a wider economic sense, due to loss of the ability to work.

•    I highlighted the multiple cases where the severely affected, and the young, were erroneously and forcibly removed from their homes, or sectioned, and the impact that this causes not only on the patient but the family – this is something that should not happen, and there are fears that the new mental health bill, will actually make things worse – something again that I raised.

•    I highlighted the lack of appropriate, or in some cases, any, service provision around the country, and that this has been further hampered by the Government’s removal of ring-fenced funding. That many patients do not have a GP, and if they do, many do not believe, or understand, the condition. I also highlighted that, where there is no ME/CFS service, patients are usually, and falsely, referred into the mental health system, where they can remain for years.

I am pleased that the guidelines:
•    Recognise that it is a patient’s right to choose to refuse or withdraw from any aspect of their care plan without detriment to their care.

•    The severely affected have the right to care, and that this could be through domicillary visits – although I was extremely disappointed to see that most of the severely affected section in the full document has been removed – as I felt in the draft that this was the section that most closely related to the actual illness ME, and its impact, that we all know and live with.

•    All patients will be given the offer of referral to a ME/CFS clinic – referrals will only work however:

    - If there are GPs who believe in the condition and are willing to make a referral
    - There is the funding for this to occur, and clinics to exist
    -There are the appropriately trained staff, who truly understand the condition
    - Where there is the provision of follow-up care/monitoring
    - That the clinic follows a bio-medical approach to this organic illness – for although there is no agreement on the specific cause of this condition, the majority of research papers/clinicians are in agreement that this is an organic illness, and should be treated as such.

Despite the caveats and recommendations that people will have the right to refuse or withdraw from any aspect of their care plan without detriment to their care, I fear that when this guideline comes out, I, and hundreds of thousands of other patients, will be worse off. I have already heard that the few bio-medical clinics in this country, run by the NHS, will probably become psycho-social therapy centres following this document, with no follow-up care or monitoring for the severely affected. I understand that patients have a choice, but the CMO Report on ME/CFS (Jan 2002) also gave patients the choice, and within weeks of the report coming out, patients were only being offered the ‘evidence based’ approaches, so the only offer to the patient was CBT and GET. I fear that following the publication of the NICE guidelines this will become even more widespread – particularly if targets are released of a percentage of people being expected to take part in different strategies, this, I fear, will cause the SHAs/PCTs to force people into these strategies in order to fulfil their quota – not because it is in the best interest of the patient. I believe that these guidelines, as they stand, will lead to more mis-diagnosis and mis-management, and I fear even more deaths.

I do believe that the guideline has not fully taken into account the patient and bio-medical evidence, because if it had, then it would not be recommending the widespread use of CBT and GET against patient and bio-medical research evidence. It is said that patient evidence is not given high weighting due to it being biased, but I argue that all research can suffer from bias, and can be subject to influence on the results eg. criteria used, cohort of patients chosen etc. all affects the results. I also believe that the scope of the guideline and York Review prevented bio-medical research being taken into account.

There are many issues which meant that I could not sign up to the guidelines, including not acknowledging ME as a physical neurological illness, the lack of proper diagnostic criteria, the ignoring/devaluing of patient evidence, and the recommendation of CBT and GET, all of which mean that I cannot in my conscience support the content of these guidelines.

I have stated to NICE that I am more than happy to once more represent patients as part of any rewrite or review of the guidelines – I believe that this is inevitable, and needs a more balanced approach taken, taking into account all evidence. Until the research papers which erroneously promote CBT and GET, and the false premise on which these are based, are acknowledged for their flaws, and the patient evidence is given correct weighting, then the hundreds of thousands of patients I represent, and the thousands of bio-medical research papers, will not be given proper evaluation and listened to.

I thank NICE for allowing me to be part of the process. I conscientiously worked long and hard, and took my position as patient representative very seriously. I have tried my hardest to fight on behalf of the patients, at considerable detriment to my own health (2½ years of constant trips to London to attend meetings, and the huge amount of work inbetween), to give the patient viewpoint/evidence and provide the group with bio-medical research/evidence. I hope that you will all understand my reasons behind my decision to remain with the group till the end, and my decision to subsequently resign. I thought long and hard about the consequences of my decision, but ultimately I had to act in, what I felt were, the best interests of my fellow patients.
]]><![CDATA[PRESS RELEASE: Official Statement from the Whittemore Peterson Institute Regarding UK Study]]>PRESS RELEASE: Official Statement from the Whittemore Peterson Institute Regarding UK Study

The Whittemore Peterson Institute (WPI) has reviewed the paper entitled “Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” This study did not duplicate the rigorous scientific techniques used by WPI, the National Cancer Institute and the Cleveland Clinic, therefore it cannot be considered a replication study nor can the results claim to be anything other than a failure not just to detect XMRV, but also a failure to suggest meaningful results. 

The scientific methods used by WPI are very exact and require specific techniques to ensure accuracy. Differences in techniques employed by Erlwein et al. not only explain their failure to replicate the WPI study, but also render the conclusions meaningless. These differences include, but are not limited to the following:

1) blood sample volumes and processing;
2) patient criteria/population differences;
3) number and type of tests done to assure accurate results, including white blood cell culture;
4) use of a molecular plasmid control in water versus a positive blood sample; and
5) different primer sequences and amplification protocol used to find the virus, which were not validated by a clinical control.

The WPI study was published after six months of rigorous review and three independent lab confirmations, proving that contamination had not taken place and that infectious XMRV was present in 67 percent of CFS patients diagnosed according to the Canadian and Fukuda criteria. In contrast, this latest study was published online after only three days of review. Significant and critical questions remain as to the status of patient samples used in the UK study as those samples may have been confused with fatigued psychiatric patients, since the UK has relegated “CFS” patients to psychiatric care and not traditional medical practices.
You can read the full article here: 
http://www.wpinstitute.org/news/docs/WPI_Erlwein_010610.pdf


]]><![CDATA[ME Association UK statement on retrovirus XMRV and ME/CFS]]>RETROVIRUS XMRV and ME/CFS:  WHAT DO WE KNOW SO FAR?  AND WHAT DON'T WE KNOW?

BACKGROUND
 
On Friday 9 October, the front page of the UK Independent newspaper carried a major news item under the heading, 'Has science found the cause of ME?'  This referred to new research findings from America which indicate that a recently discovered retrovirus, known as XMRV (xenotropic murine leukaemia virus-related virus), could be playing an important role in causing or maintaining ME/CFS. The news item was accompanied by a very supportive editorial about the need for recognition and research into ME/CFS.  These two items can be read here.
The Independent story was soon followed up by the rest of the UK media, including the BBC.  Most of the news reports gave a balanced and accurate account of the research but some incorrectly inferred that the sole cause of ME/CFS had now been conclusively discovered.  A selection of UK media reports can be found in the October news archive on the MEA website.
 
The actual research paper was  published in the online edition of Science, along with a perspective written by John Coffin (Department of Molecular Microbiology, Tufts University, Boston, USA) and Jonathan Stoye (National Institute for Medical Research, London).
 
References:
 
Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome.  Lombardi V et al.  Science  October  8 2009
Abstract: click here
 
A new virus for old diseases?  Coffin JM and Stoye JP.  Science October 8 2009  326; p215
Abstract: click here
 
ME ASSOCIATION POSITION
 
These are clearly important research findings that could help with both the diagnosis and management of ME/CFS, and we congratulate all those involved.
 
However, a number of questions still have to be answered before anyone can conclude that this virus plays a significant role in either the cause, transmission, clinical assessment or management of ME/CFS.  Much more epidemiology and laboratory work now needs to be done to answer the essential points set out below:
  • Carrying out further and larger studies using different populations of people with ME/CFS, including people at different stages of the illness (to see if the virus is present in the same percentages in both early and late cases) and in all degrees of severity.
  • Using different international laboratories to test for evidence of the virus.
  • Assessing what, if any, correlation there is between the presence of this virus and (a) severity of symptoms, (b) a clear infectious onset with a known infection, and (c) various other factors involved in sub-grouping of people under the ME/CFS umbrella.
  • Assessing to what extent this virus is also present in other chronic conditions, especially those such as multiple sclerosis and lymphoma where viral infections have been implicated as a causative factor.
  • Assessing whether this virus is acting as a benign marker of disease or immune dysfunction, or is a 'passenger virus', or whether it has a role in the actual disease process and development of symptoms.
  • Investigating whether the presence of the virus in healthy people acts as a predisposing factor in the development of ME/CFS (possibly when another infective trigger appears) and/or prostate cancer - rather than being involved in the actual disease process.
  • Investigating what effect, if any, the virus has in healthy people who carry it.
  • Assessing whether people with evidence of the virus should be treated with antiretroviral medication, and if so developing a suitable antiviral drug.
  • Assessing whether animal model studies would help to increase our understanding of the way in which this virus infects cells and possibly causes disease.
TESTING FOR XMRV
 
Until these research findings have been robustly replicated, and we have the answers to some of the above questions, there is no point in asking your doctor to be tested for XMRV.  This is because the NHS does not currently have the facilities to do so and the testing procedures are only being used in a research capacity at present.  But if it does turn out that there is a consistent and strong association with ME/CFS then testing for XMRV would almost certainly have to be made available.
 
VIRAL TRANSMISSION
 
We appreciate that people with ME/CFS may be very concerned about the possibility of transmission of XMRV through what are termed body fluids (ie blood, saliva, semen).  However, until we know more about what this virus does in the body it would be premature to start arriving at firm conclusions and recommending all kinds of restrictions to normal daily living.  Remember:  we still do not know for certain whether this is a disease-causing virus in humans and whether it plays a role in causing or maintaining ME/CFS.
 
One simple way of obtaining some early clues about viral transmission would be to test for the presence of the virus in healthy partners and offspring of people who have the infection and compare the findings to a control group of people that have no such link.
 
If the virus is also present in up to 4% of the normal healthy population here in the UK (ie around 2.4 million, or ten times the number of people who have ME/CFS), as appears to be the case in America, there could  be more widespread implications for public health, blood donation etc.
 
In relation to blood donation in the UK, current advice is that people with ME/CFS who have symptoms, or are receiving treatment, should not donate blood.  It would seem sensible in the short term, until we know more about transmission and pathogenicity of XMRV,  to consider extending this restriction to people who have recovered from ME/CFS.
 
ROLE OF THE MEA RAMSAY RESEARCH FUND
 
The ME Association is keen to progress this research here in the UK through any way we can help.  We have already made contact with virologists who are interested in this virus here in the UK and funding from the Ramsay Research Fund (RRF) could be made available very quickly if we receive a good quality research proposal.
 
More information on the work of the RRF can be found here.
 
KEY FACTS ABOUT THE XMRV RESEARCH
  • An American group from the Whittemore Peterson Institute (www.wpinstitute.org), in collaboration with the National Cancer Institute and the Cleveland Clinic, have reported finding evidence of a human retrovirus known as XMRV in blood samples taken from people with ME/CFS. 
  • Using peripheral blood mononuclear cells, DNA (viral genetic material) from the virus was found in 67% of patients (68/101) compared to 3.7% in healthy controls (8/218).
  • Further studies have found that 95% of people with ME/CFS have antibodies to the virus.
  • Blood samples were collected from people with what is referred to in the paper as CFS who live in different parts of the United States, as well as from healthy controls.
KEY FACTS ABOUT RETROVIRUSES AND XMRV
  • Retroviruses are a small group of human viruses that consist of HIV, HTLV-1 and HTLV-2.
  • XMRV is retrovirus that was first described about three years ago in some men who have prostate cancer. It may also be linked to other medical conditions, including fibromyalgia.
  • It is related to a group of viruses that can infect mice
  • This type of virus is thought to be transmitted through body fluids such as blood, semen and breast milk.  It is not transmitted through the air - like a flu virus.
  • Testing for evidence of the virus in blood is currently only available at a few specialised laboratories here in the UK.
We will update this summary as further information becomes available.

If you want to comment to us,  please do so via meconnect@meassociation.org.uk This email address is being protected from spam bots, you need Javascript enabled to view it
 
Dr Charles Shepherd
Hon Medical Adviser, ME Association

Summary 1 dated 14 ]]><![CDATA[FDA Press Release: Presence of murine leukemia virus related gene sequences found in CFS patients]]>FDA, U S Food and Drug Administration -
www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm223277.htm

Study: Presence of murine leukemia virus related gene sequences found in CFS patients

Researchers have found murine leukemia viruses (MLV) related gene sequences in blood samples collected from patients diagnosed with chronic fatigue syndrome (CFS) and some healthy blood donors, according to a study published online today by the scientific journal Proceedings of the National Academy of Sciences (PNAS).
 
Investigators from the U.S. Food and Drug Administration’s Center for Biologics Evaluation and Research and the National Institutes of Health Clinical Center, in collaboration with a physician scientist at Harvard Medical School, examined blood samples from 37 patients diagnosed with CFS and from 44 healthy blood donors.

MLV is a type of retrovirus known to cause cancer in mice. Several different MLV gene sequences were identified in samples from 32 of the 37 patients with CFS (87 percent) and 3 of the 44 (7 percent) healthy blood donors. Investigators performed DNA sequencing on all positively amplified samples to confirm MLV like gene sequences.

This study supports a previous investigation [Lombardi et al. Science October 23, 2009 326: 585] that showed XMRV, a genetic variant of MLV-like viruses, to be present in the blood of people with CFS.  The study demonstrates a strong association between a diagnosis of CFS and the presence of MLV-like virus gene sequences in the blood.  The study also showed that MLV-like viral gene sequences were detected in a small fraction of healthy blood donors.  Although the statistical association with CFS is strong, this study does NOT prove that these retroviruses are the cause of CFS.  Further studies are necessary to determine if XMRV or other MLV-related viruses can cause CFS.

A previous study, published in 2009, reported finding XMRV infections in a high percentage of CFS patients and a small percentage of healthy blood donors. However,
several other studies from the United States (including a recent report from the Centers for Disease Control and Prevention), the United Kingdom, and the Netherlands have found no evidence of XMRV or other MLV-like viruses in the blood of people with CFS.

For more information:

    * Murine Leukemia Virus Gene Sequence Study - Questions and Answers:
http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/ucm223232.htm

    * Xenotropic Murine Leukemia Virus-related Virus - Overview (CDC):
http://www.cdc.gov/xmrv/index.html

    *      Xenotropic Murine Leukemia Virus-related Virus - Questions and Answers (CDC):
http://www.cdc.gov/xmrv/questions-answers.html]]><![CDATA[Positive ‘XMRV-study’ is only a matter of time]]>www.voedingenpsyche.nl

This press release was issued today 2010/3/05 in The Netherlands.
url: http://www.voedinge npsyche.nl/ nieuwsitem. php?item= 86

Here is an English translation.

Positive ‘XMRV-study’ is only a matter of time

Prague - May 3, 2010. Last October U.S. scientist presented a breakthrough
around the research on chronic fatigue syndrome (CFS), which was published
in Science. They found traces of the retrovirus XMRV in the blood of CFS
patients. Thereafter, three groups of researchers, including one from
Nijmegen, couldn’t confirm these findings. However, at the "Centennial
Retrovirus Meeting" in Prague it became clear that the first positive
'replication study' seems only a matter of time.

The June issue of the journal Ortho will focus on the multi-day conference
in Prague, which ends today. Especially in the corridors this new retrovirus
was the talk of the day. Insiders agree that the negative XMRV studies which
have been published so far, were not exact replication studies. These groups
used techniques that differed too much from those used by the U.S.
researchers. This is also true for a yet unpublished German study, where
XMRV wasn’t found in blood samples from CFS patients either.

Recently the American scientist Dr. Judy Mikovits visited several European
research groups to instruct them in the proper laboratory technique. It is
now clear that these visits are starting to pay off. During the Prague
Conference Mikovits explained once more in great detail the complex
methodology of the Whittemore-Peterson Institute (WPI), the National Cancer
Institute (NCI) and the Cleveland Clinic. This methodology of cultivating
the virus is imperative because XMRV is only present in extremely low
concentrations in the peripheral blood.

Dr. Francis Ruscetti of the renowned NCI - a U.S. government agency – told
Ortho that he hopes this controversy will be over in 2011. He is especially
surprised about the fact that the investigators of the UMC St. Radboud
concealed in their publication that the Americans found traces of XMRV in
the same blood samples from the Dutch patients. "I do not know how they
think they get away with this ethically," said Ruscetti. "I do not think
this is good science." Ruscetti pointed out again that the WPI, the NCI and
the Cleveland Clinic applied four procedures in their research. "In the
negative studies only one procedure was applied." Ruscetti also ventilated
his annoyance over what he calls the "whisper campaign" about contamination.
According to the Nijmegen researchers, the Americans contaminated or
polluted the Dutch blood samples.

Among others Ruscetti is supported by Prof. Dr. John Coffin, who is linked
both to the NCI and Tufts University in Boston. He is considered one of the
most prominent retrovirologists in the world. "People have raised the issue
of contamination, " said Coffin. "But nothing is known about this. There is
not a single shred of evidence to support these rumours. Much of the
research is done at the NCI, in the laboratory of Francis and Sandra
Ruscetti. They have a long experience with these viruses and are very
cautious."

Coffin emphasized once again that doing a replication study implies that it
is performed in exactly the same way. "In none of the negative studies that
have been published so far, the virus was grown," said Coffin. 'Only in the
Science study this has been done, and that is a very strong point. "
Researchers from Nijmegen were not present at this leading conference.

Patients, professionals and the media may read the latest news on ME / CFS,
XMRV (and blood transfusion) on www.voedingenpsyche .nl. This is the website
of the Congress Food & Psyche, which will be devoted entirely to ME / CFS
this year.]]><![CDATA[New blood donation policy for ME/CFS patients from 1 November 2010]]> http://meagenda.wordpress.com/


Please go to shortlink: http://wp.me/p5foE-33U

ME Association

EXCHANGE OF CORRESPONDENCE BETWEEN THE ME ASSOCIATION AND THE CHIEF MEDICAL OFFICER: PROFESSOR DAME SALLY DAVIES

Resulting in the introduction of a new blood donation policy re ME/CFS as from 1 November 2010

August 16 2010

Dear Dame Sally Davies

ME/CFS and blood donation

I wrote to Sir Liam Donaldson on 27 October 2009 following publication of the paper in Science which contained the results of a research study that had found evidence of XMRV infection in people with ME/CFS.

In this letter I referred to The MEA website statement on XMRV, which called for the current UK ban on people with ME/CFS donating blood while being symptomatic to be extended to include anyone who had suffered from the illness in the past but now appeared to be in remission or had recovered. We felt this was necessary given the uncertainty over prevalence, transmission and possible pathogenicity of this infection.

Dr David Harper (Director General of Health Improvement and Protection) replied on 9 November 2009 by stating that this correspondence had been brought to the attention of the Director of the UK Blood Services Joint Professional Advisory Committee and that the situation was to be reviewed by the Standing Advisory Committee on Transfusion Transmitted Infections (SACTTI), who would be producing a risk assessment for the UK Blood Services and the Health Protection Agency. Dr Harper also stated that The MEA concerns had been brought to the attention of  the Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO) and the National Expert Panel on New and Emerging Infections (NEPNEI).

Relevant part of the 2009 MEA website statement >>

BLOOD DONATION AND XMRV

In relation to blood donation in the UK, current advice is that people with ME/CFS who have symptoms, or are receiving treatment, should not donate blood. It would seem sensible in the short term, until we know more about transmission and pathogenicity of XMRV, to consider extending this restriction to people who have recovered from ME/CFS. It seems strange that many overseas countries have not followed the UK lead on blood donation and ME/CFS.

The MEA has written to Sir Liam Donaldson, Chief Medical Officer at the Department of Health, regarding the possibility of XMRV being transmitted via human blood products and the implications that this has for blood donation.

The CFIDS Association of America has been issued with guidance from the National Cancer Institute regarding blood donation in the US. The guidance can be read on the CFIDS website.

We now understand, through a letter that is circulating on the internet, that a decision to extend the ban has been made.

Letter in circulation >>

    Dear Ms xxxx,

    Thank you for your email of 19 July to Andrew Lansley about the xenotropic murine leukemia virus-related virus (XMRV) and chronic fatigue syndrome/myalgic encephalomyelitis (CFS / ME). I have been asked to reply on his behalf.

    The issue of XMRV was not specifically raised during the meeting on 20 July with campaigners from Tainted Blood. The National Expert Panel on New and Emerging Infections (NEPNEI) undertook a thorough assessment of the scientific data in June 2010 and concluded that although XMRV can infect humans, there is currently no evidence that it causes disease in humans. NEPNEI’s view is that development of a robust diagnostic tool to detect infection accurately is a priority for further investigation of this infection. Further work is required to investigate which human tissues are susceptible to infection, the epidemiology of infection and whether this infection is of any public health significance.

    Both NEPNEI and the Advisory Committee on the Safety of Blood, Tissues and Organs have considered the current evidence and have recommended that no public health action is required at this time. However, the situation will be monitored closely.

    In the absence of any infectious cause of CFS, people with this relapsing syndrome are currently excluded from donating blood while they feel unwell, in order to protect their own health. The UK Blood Services will shortly be amending its criteria to exclude such people from blood donation on a lifetime basis, bringing them in line with the practice of not accepting donations from people with other relapsing conditions. Whilst the purpose of this is to protect the donor’s health from any possible harmful effects from donating blood, it will also minimise the likelihood that donations from people who have ever suffered from CFS could enter the blood supply.

    I hope this reply is helpful.

    Yours sincerely,

    Mary Heaton
    Customer Service Centre
    Department of Health
    13 August 2010

We would therefore appreciate some further clarification on this important point and the date when the UK Blood Services will be bringing this extension into effect.

Could I also point out in relation to the opening sentence in the final paragraph of the above letter from Mary Heaton, that whilst it is true that the role for persisting infection in ME/CFS remains uncertain there is very sound evidence, as is referred to in Sir Liam Donaldson’s report into ME/CFS, to show that a variety of infections, predominantly viral, can precipitate this illness. There is also evidence of reactivation of latent viral infection (eg  EBV and HHV-6) in some of these patients.

Finally, you may not be aware that a number of other countries have followed the UK lead in banning blood donations from people with ME/CFS. These countries include Australia, Canada and New Zealand.

However, I find it surprising that no such precautionary action has been announced, at present, by those responsible for blood safety in America.

Yours sincerely

Dr Charles Shepherd

Hon Medical Adviser, ME Association

Member: CMO Working Group on ME/CFS (2002)

Member: MRC Expert Group on ME/CFS Research

ME Association
7 Apollo Office Court
Radclive Road
Gawcott
Bucks MK18 4DF

Website: http://www.meassociation.org.uk

REPLY RECEIVED 27 AUGUST 2010

    Dear Dr Shepherd

    ME/CFS and Blood Donation

    Thank you for your further letter to Professor Dame Sally Davies, Chief Medical Officer (CMO) for the Department of Health, about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and blood donation. I am responding on her behalf.

    As of 1st November 2010, blood donors who report that they have had ME/CFS will be permanently excluded from giving blood in the UK. This change is being made on the grounds of donor safety, as ME/CFS is a relapsing
    condition. It brings practice for ME/CFS into line with other relapsing conditions or neurological conditions of unknown origin.

    The change to donor selection criteria is being made following a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee (JPAC).

    Yours sincerely

    Clara Swinson
    Director of Health Protection
    Department of Health

    Wellington House, 133-155 Waterloo Road, London SE1 8UG







]]><![CDATA[PRESS RELEASE: Whittemore Peterson Institute Scientists Discover Significant Link between XMRV and ME/CFS]]>
http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf]]><![CDATA[New evidence that virus may cause chronic fatigue]]>http://www.washingtonpost.com

By Rob Stein

A well-respected team of scientists released long-awaited new evidence Monday that a virus may be playing a role in chronic fatigue syndrome.

The researchers, from the National Institutes of Health, the Food and Drug Administration and Harvard Medical School, analyzed blood samples that had been collected 15 years ago from 37 patients with chronic fatigue syndrome. Most of the subjects--32, or 86.5 percent--tested positive for a virus known as a murine leukemia virus-related virus, the researchers found. In contrast, tests on 44 healthy blood donors detected evidence of the virus in only three of the subjects, or 6.8 percent.

To read the whole article, please so to:
http://voices.washingtonpost.com/checkup/2010/08/new_evidence_virus_may_cause_c.html]]><![CDATA[The East Anglia ME Patient Partnership's Respose to the Nice Guidelines]]> http://eastanglia.me.uk

Patient’s Partnership was responding to guidelines published by the National Institute of Health and Clinical Excellence (Nice) yesterday on chronic fatigue syndrome/myalgic encephalopathy (CFS/ME).

The recommendations recommend that people under 18 with symptoms be referred to a paediatrician within six weeks of first seeing their doctor; and after other possible causes have been excluded, a CFS/ME diagnosis should be made after symptoms have persisted for four months in adults and three months in a child.

In managing the condition, Nice say individualised management plans should be developed; health professionals should provide care in ways suitable for the individual; and clinicians should offer advice on managing activity, rest periods, sleep patterns, diet, and advice on fitness to work or be in education.

Cognitive behavioural therapy and/or graded exercise therapy should be offered to people with mild or moderate CFS/ME and provided for those who choose it, says the guidance.

However, it is this area that has angered EAME.
Chairman Greg Crowhurst from Great Walsingham in north Norfolk said: “These guidelines boil down to just one thing: a blanket recommendation of the two interventions that a significant majority of ME patients find the most harmful and the most useless – graded exercise therapy and cognitive behavioural therapy.”

He said that he believed the ME community would consider a legal challenge to the guidelines and added: “It is difficult to read these guidelines without an overwhelming sense of anger and despair. They have little relevance whatsoever to people with ME, particularly the severely affected.”

CFS/ME affects just under 200,000 people and can be disabling, involving a complex range of symptoms including fatigue, headaches, sleep disturbance and muscle pain.

Nice chief executive Andrew Dillon said: “Until now there have been uncertainties about the diagnosis and management of this condition, but this new guideline will help health professionals make an accurate diagnosis, whilst considering other conditions that may be present.”


]]><![CDATA[Research finds no proof that a virus is the cause of ME]]> BBC NEWS
Study challenges ME 'virus link'
By Michelle Roberts
Health reporter, BBC News -
http://news.bbc.co.uk/2/hi/health/8441491.stm

UK scientists say they can find no proof that a particular virus is the cause of chronic fatigue syndrome (CFS) or ME, contrary to recent claims.

The Imperial College London team say they want to share the findings as some patients are pinning their hopes on drugs to fight the virus called XMRV.

They analysed blood samples from 186 patients with CFS and found none had the virus, PLoS One journal reports.

Experts said the latest findings would be a bitter disappointment to many.

They said more trials were under way and when these report in coming months, scientists will be able to draw more firm conclusions.

Work in the US, published in Science, had found the retrovirus in 68 of 101 CFS patients.

The UK team say the conflict between the two studies might be down to differences between the patients enrolled or the way the research was conducted.

“ We need to be extremely cautious until we know more ”
Dr Charles Shepherd The ME Association

Or there might be different geographical types or strains of XMRV.

Regardless, they say potent antiretroviral drugs should not be used to treat CFS because there is not enough evidence that this is necessary or helpful.

The drugs may do more harm than good, they say.

Professor Myra McClure, one of the Imperial College London investigators, said: "We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK."

She said they had used extremely sensitive DNA testing methods, called polymerase chain reaction, to look for the virus.

"If it had been there, we would have found it."

'Disappointing'

Co-author Professor Simon Wessely said the findings did not invalidate all previous research, some of which has shown that CFS can be triggered by other infectious agents, such as Epstein Barr Virus.

ME FACTS
  • Causes chronic fatigue and muscle pain
  • Impairs immune system
  • Does not improve with sleep
  • Affects more women than men
  • A controversial condition that some have doubted as a genuine physical illness

    • The charity Action for ME said it was disappointing to hear about these findings, but said no single small-scale study could be conclusive.

    Dr Charles Shepherd, of The ME Association, said it was important to remain open-minded.

    "We need to be extremely cautious until we know more. There has been enormous interest in this from patients.

    "Some have been led into believing the cause and a test has been discovered and that treatment is just round the corner and that is not the case.

    "Over the next few weeks and months we will have more results and then we can come to a conclusion.

    "If it turns out that XMRV is important, we will have to start looking at whether it is worthwhile testing for it and treating it."

    In a statement, the charity Invest in ME said the original study was of the "highest quality", and that much more work was required before any firm conclusions could be drawn.

    See article and comments from BBC NEWS:
    http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/8441491.stm

    Published: 2010/01/05 18:21:26 GMT

    © BBC MMX


    ]]>    <![CDATA[ME Association UK's statement on Prof. Kenny DeMeirleir's £13 ME test]]>http://www.meassociation.org.uk/content/view/875/161/

    Is ME/CF caused by hydrogen sulphide? And is there is a new diagnostic test for ME/CFS?

    Following a press conference at the Ritz Hotel in London on Thursday May 28, a number of UK newspapers have been reporting that the cause of ME/CFS has been identified and that a simple home-based diagnostic test for ME/CFS is now commercially available to the general public.

    Daily Telegraph story - http://tinyurl.com/kn246t

    The urine test is based on the new scientific hypothesis that people with ME/CFS are producing excessive amounts of a chemical called hydrogen sulphide (H2S) and that this abnormality can be measured by a specific urine test (that measures an H2S metabolite/by-product).

    The production of excessive amounts of  this chemical  (which can act as a mitochondrial* poison)  is claimed to be due to overgrowth of certain lactate-producing bacteria in the gut (including species of enterococcus and streptococcus).  This is coupled with the presence of metal (such as mercury and nickel) intoxication in the body.  It is also claimed that the problem in the gut can be successfully treated through changes in diet, probiotics ('healthy bacteria') and antibiotics.
     
    The urine test kit, designed for use at home, is only available privately at a basic cost of around £13.  This test kit has to be ordered from abroad and is not available on the NHS.
     
    Dr Charles Shepherd, Medical Adviser to the MEA, adds a note of caution:
     
    "I have looked at the scientific information upon which this test is based and heard the presentations from Professor Kenny De Meirleir and Dr Chris Roelant - two of the people involved with this research -  at the Invest in ME Conference on Friday 29 May.  My conclusion is that while this is an interesting hypothesis, the test itself cannot yet be regarded as a scientifically proven diagnostic test for ME/CFS.
     
    "The urine test needs to be further validated using significant numbers of ME/CFS patients with all degrees of severity and from various other referral centres.  The results need to be compared to significant numbers of healthy matched controls, people with other conditions that involve fatigue, and people who are bed-bound or severely affected by other disabling conditions that may affect their nutritional status.  The latter point, which was made at the conference on Friday, is particularly important because much of the work so far appears to relate to a severely affected sub-group of ME/CFS patients.  The MEA's Ramsay Research Fund would be willing to consider any such research proposal.  The results then need to be published in peer-reviewed medical journals.
     
    "There are also going to be problems if people start using this test and then expect their family doctors/GPs to interpret the results and recommend/prescribe specific treatment, including antibiotics, based on the results.  This is because the UK medical profession has not yet received any information about either the underlying hypothesis, or the test, or the treatment recommendations, in their scientific journals.
     
    "Until we have further results from several good quality independent studies, it would be premature to conclude that a significant factor in the causation of ME/CFS has been discovered and that a simple urine test is now available for diagnosing ME/CFS.  The recommendations regarding treatment are speculative and need to be subjected to equally rigorous clinical trials before any firm conclusions can be drawn about their general efficacy in ME/CFS."
     
        *      If anyone has made use of this test please let us know how much it cost in total and what happened when the results were discussed with a doctor.

    * Mitochondria are the energy-producing parts of cells





    ]]>    <![CDATA[XMRV Research]]>The Whittemore Peterson Institute for Neuro Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in life long disease and disability.

    For latest news on the XMRV research, please go to:     http://www.wpinstitute.org/xmrv/index.html]]>    <![CDATA[PNAS: Detection of MLV-related virus gene sequences in blood of patients with CFS]]>
    To download PDF, please go to:
    http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf]]>    <![CDATA[I've seen patients paralysed, dying Aids victims, starving children... but I've never seen anyone as ill as Lynn]]>http://www.dailymail.co.uk

    By Gill Swain

    On a glorious day two years ago last summer, I turned into a cul de sac on the edge of an East Sussex village. I had arranged to interview Kay Gilderdale about her daughter Lynn's struggle with ME, the so-called 'yuppie flu'.

    It was hard to imagine anything could be terribly wrong inside such an immaculately ordered home.

    Kay greeted me with a smile. I remember a quiet, neat woman with a low voice and a gentle manner. She was a little other-worldly, cut off as she was from normal life, and I had the impression of someone worn almost threadbare by years of suffering. But she had a core of inner strength, was in no way self-pitying and was clearly utterly devoted to her daughter.

    She led me through the sitting room which I remember felt like a dead zone, completely unused, to the room at the back where Lynn had been lying in her bed for 14 years.

    This was where the life of the house took place, such as it was, and an attempt had been made to give it cheer with pretty furnishings and ranks of soft toys on the shelves.

    But the curtains were drawn, shutting out that lovely day and every other day. In the gloom I made out a small, ethereal figure lying completely flat and motionless, her skin so pale it was almost translucent, the only sign of life her large, beautiful brown eyes.

    Yesterday, I heard that Lynn had died last Thursday and that police had arrested Kay on suspicion of murder. I felt infinitely and bitterly sad, not so much that Lynn had died because I felt that at last she was released from what was a terrible living death, but because fate had inflicted such cruelty during her life.

    My first reaction to the news about Kay was disbelief. She took such pains with Lynn, slept with an intercom, reacted to every whimper, saved her fragile life on so many occasions. I could not imagine her harming her.
    Desperately ill Lynn was fed through a tube, and was hypersensitive to light and sound

    Desperately ill Lynn was fed through a tube, in constant pain, and was hypersensitive to light and sound

    I thought of what life must have been like in the two years since I met them, what pain and despair the two of them must have endured as Lynn perhaps deteriorated further and no hope of a cure appeared on the horizon.

    Before meeting this remarkable mother and daughter I had seen African children suffering from starvation, met people dying of Aids, patients paralysed from the neck down, others in the last stages of terminal cancer. But I had never seen a living person as desperately ill as Lynn Gilderdale.

    Hypersensitive to light and noise, she lay on a sheepskin to prevent bedsores, with her head resting on a towel. There was a tube down her nose delivering liquid food and a Hickman line pumping drugs straight into her chest. Her legs were paralysed and without feeling, she was unable to sit up without passing out and her neck was too weak to support her head.

    She had lost more than half the bone density in her spine and had gone through the menopause at the age of 20. She was in constant pain. She was on drugs to prevent sickness and spasms, was unable to swallow and had not spoken since August 1992, three months after she had been diagnosed with ME at the age of 14.
    Lynn aged 10, with her Netball team. The ME sufferer led a highly active life before she was struck down with the illness

    Lynn aged 10, with her Netball team. The ME sufferer led a highly active life before she was struck down with the illness

    In my 35 years as a journalist, the story of Lynn and Kay Gilderdale was one of the most affecting cases I had come across. I felt shocked, chastened and humbled as I talked to them and the memory of Lynn's haunting brown eyes, set in an exquisitely beautiful face, has stayed with me ever since.

    At the time I didn't know how she could sustain life in such a state but the answer, of course, was Kay. Aged 37 when Lynn fell ill, Kay gave up her accounting job and any semblance of a life of her own to care for her daughter.

    Kay was almost as trapped in that shrouded room as Lynn was. She had a carer in twice a week so she could go shopping, and her former husband, Richard, and son, Steven, were involved in caring for Lynn too which meant she could get away for occasional weekends to her native Ireland.

    But in the main the relentless, 24-hour burden of keeping Lynn alive lay with Kay. I didn't know how she'd had the strength to bear it, year after year. She could only have kept going by clinging to a belief, however tenuous, that Lynn might one day recover.

    Sadly, to me it seemed a false belief and I asked myself how long even such a devoted mother would be able to sustain it.

    'It's like she's in limbo,' Kay told me. 'If someone dies you mourn them, then you get to a stage where you know that person is gone and you move on.

    But she is neither one nor the other. She is stuck in that room, not dead, but not alive properly. It is an awful place to be. 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.'

    Anger at the way many people, including doctors and nurses, persisted in believing that ME is some kind of self-induced 'yuppie flu' kept her going too. To Kay it was utter cruelty for people to imagine that Lynn would willingly choose her limbo existence.

    She lovingly pored over photographs of her pretty daughter enjoying the active life she led before she fell ill - receiving a trophy for ballet at the age of nine, as captain of the netball team at ten, going surfing, horseriding and windsurfing with her brother.

    Lynn also played the piano and clarinet and loved going to the youth club with her friends. Handling the precious images with infinite care, Kay said wistfully: 'We didn't realise how happy we were, until we lost it.'

    That loss came with shocking suddenness in November 1991, when Lynn felt unwell after a vaccination against tuberculosis. She struggled in to school the next day but was sent home sick and never returned.

    She developed flu, bronchitis, tonsillitis and glandular fever, one after the other. 'By February she was really very ill and was in hospital,' said 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.'

    By May, 1992, ME had been diagnosed. Lynn was bedridden, had difficulty swallowing, couldn't recognise people and her voice had reduced to a whisper. 'That first year was so terrible when we knew she was extremely ill but the tests didn't show anything,' added her mother.

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

    'Sometimes she was in such pain, she would ask us, "What is going to happen to me?" But we had no answers and neither did the doctors.'

    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. 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 the 16 years since then, Kay, who once trained as an auxiliary nurse, has provided that peace and care. There was a large fish tank beside Lynn's bed which she liked watching. She had a hamster which she played with in the afternoons and an iPod on which she listened to music and stories.

    She could move her arms and had developed a sign language to communicate with her family. I asked her if she was fed up with being like this and she held up her thumb and forefinger emphatically an inch apart, meaning: 'Just a bit!'

    Through her mother she also said that, though she was sad, she was not depressed. 'I am not brave, I have no choice but to be hopeful, otherwise I would just give up,' Kay translated.

    Kay told me, and I believed her, that she did not resent what Lynn's illness had done to her own life. It was her choice and her job to make her daughter's life as easy as possible and the only thing that would make her happy was Lynn's recovery. But she did resent 'whoever or whatever' made her so ill.

    'It's been heartbreaking to watch my child lose her faculties one by one,' she told me. 'She doesn't deserve it. It isn't fair. It's very hard for me to see mothers and daughters together or to hear a family in the garden having a barbecue with children running around.'

    At that time Lynn still had yearnings to have a baby. As I looked at her, without the strength even to lift her head from the pillow, I found such a pathetic hope heartbreaking. Kay was more realistic, hoping only that once the virus which caused her ME had burned itself out, everything else would start working again.

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

    'If she could come out of that room, 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.'

    When I heard of Lynn's death, I could only imagine that, finally, all hope of her ever feeling the air on her face again had died. And salute the courage, strength and love which had kept that hope alive for so long, through such appalling agony.]]>    <![CDATA[New XMRV research study announced]]>www.meassociation.org.uk

    Information provided to the ME Association by Dr Charles Lapp - Hunter Hopkins Centre, Charlotte, USA.

    http://www.meassociation.org.uk/index.php?option=com_content&view=article&id=1234:new-xmrv-research-study-announced&catid=30:news&Itemid=161

    You have probably already heard that Dr. Dan Peterson and the Whittemore-Peterson Institute reported in Science ( Oct 2009 ) that 97% of blood specimens stored since the CFS outbreaks of 1984-1986 were positive for a new retrovirus called XMRV. This finding raised several questions:  (1) Is this for real?  (2) Does XMRV just like people with CFS or does it cause the illness?  (3)  And if it causes CFS, what drugs can treat it?
     
    Sadly, subsequent studies have failed to confirm the association of XMRV with CFS (Erlwein, 2010; Groom, 2010, van Kuppeveld, 2010). Many argue that follow-up studies are tainted by the patient population studied and the methodologies used. For example,  XMRV may only occur  in a subgroup of severe CFS patients. Subjects from the Science paper had disabling fatigue, cognitive deficits,  and reproducible immunological abnormalities (such as abnormalities of RNase L, low natural killer cell cytotoxicity, and elevated cytokines).
     
    XMRV may also have a distinct geographical distribution. For example, in prostate cancer patients, XMRV has been detected in North America while not detected in European subjects. Two of the negative CFS studies were performed in the United Kingdom (Erlwein, 2010; Groom, 2010), where patient selection is different than in the USA.
     
    Finally, the negative papers may have used diagnostic methods to detect XMRV that were either different or deficient.

    To help resolve this quandary, a pharmaceutical company is planning a study that will evaluate CFS patients with characteristics similar to the Science paper. Ethics board approval is pending, but we expect this study to begin shortly.

    Specimens for this study will be obtained through the SolveCFS BioBank initiated by the CFIDS Association based on referrals of patients who meet study criteria from Hunter-Hopkins Center as well as Drs. Klimas (Miami), Bateman (Salt Lake) and Gluckman (Philadelphia) in order to sample subjects from diverse geographic locations.
     
    So far no one has been able to corroborate the Whittemore-Peterson results, but we remain hopeful that by choosing the right subjects and the right techniques, this planned study will be able to confirm Dr. Peterson’s findings. Then work can begin to understand how XMRV affects PWCs, and how we could possibly treat it.

    ADDITIONAL INFORMATION RECEIVED FROM THE CFIDS ASSOCIATION OF AMERICA

    March 31, 2010

    Since we announced the SolveCFS BioBank on Monday, there has been tremendous enthusiasm about the opportunity to participate in this type of ground-breaking research. However,until all the required institutional approvals are obtained by all parties required to initiate BioBank-based studies, the CFIDS Association of America is not able to share information or comment on reports initiated by others about studies being planned. In the interim, please refer to our March 29, 2010 announcement about the SolveCFS BioBankand updated eligibility criteria.

    We hope that you agree that adhering to protocols established for confidentiality, privacy and the ethical conduct of research serve the interests of all of us dedicated to advancing understanding of CFS.


    ]]>    <![CDATA[Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome]]>http://www.cancer.gov/newscenter/pressreleases/CFSxmrv

    Scientists have discovered a potential retroviral link to chronic fatigue syndrome, known as CFS, a debilitating disease that affects millions of people in the United States. Researchers from the Whittemore Peterson Institute (WPI), located at the University of Nevada, Reno, the National Cancer Institute (NCI), part of the National Institutes of Health, and the Cleveland Clinic, report this finding online Oct. 8, 2009, issue of Science.

    XMRV has two genomes of RNA per virus particle. White squiggles are RNA molecules and red ovals represents the viral enzyme, reverse transcriptase, a protein that copies the virus RNA genome into DNA.

    "We now have evidence that a retrovirus named XMRV is frequently present in the blood of patients with CFS. This discovery could be a major step in the discovery of vital treatment options for millions of patients," said Judy Mikovits, Ph.D., director of research for WPI and leader of the team that discovered this association. Researchers cautioned however, that this finding shows there is an association between XMRV and CFS but does not prove that XMRV causes CFS.

    The scientists provide a new hypothesis for a retrovirus link with CFS. The virus, XMRV, was first identified by Robert H. Silverman, Ph.D., professor in the Department of Cancer Biology at the Cleveland Clinic Lerner Research Institute, in men who had a specific immune system defect that reduced their ability to fight viral infections.

    "The discovery of XMRV in two major diseases, prostate cancer and now chronic fatigue syndrome, is very exciting. If cause-and-effect is established, there would be a new opportunity for prevention and treatment of these diseases," said Silverman, a co-author on the CFS paper.

    Commonality of an immune system defect in patients with CFS and prostate cancer led researchers to look for the virus in their blood samples. In this study, WPI scientists identified XMRV in the blood of 68 of 101 (67 percent) CFS patients. In contrast, they found that eight of 218 healthy people (3.7 percent) contained XMRV DNA. The research team not only found that blood cells contained XMRV but also expressed XMRV proteins at high levels and produced infectious viral particles. A clinically validated test to detect XMRV antibodies in patients' plasma is currently under development.

    XMRV is a virus that may be associated with chronic fatigue syndrome. This photo from under a microscope shows copies of the virus attacking a cell.

    These results were also supported by the observation of retrovirus particles in patient samples when examined using transmission electron microscopy. The data demonstrate the first direct isolation of infectious XMRV from humans.

    "These compelling data allow the development of a hypothesis concerning a cause of this complex and misunderstood disease, since retroviruses are a known cause of neurodegenerative diseases and cancer in man," said Francis Ruscetti, Ph.D., Laboratory of Experimental Immunology, NCI.

    Retroviruses like XMRV have also been shown to activate a number of other latent viruses. This could explain why so many different viruses, such as Epstein-Barr virus, which was causally linked to Burkitt's and other lymphomas in the 1970s, have been associated with CFS. It is important to note that retroviruses, like XMRV, are not airborne.

    "The scientific evidence that a retrovirus is implicated in CFS opens a new world of possibilities for so many people," said Annette Whittemore, founder and president of WPI and mother of a CFS patient. "Scientists can now begin the important work of translating this discovery into medical care for individuals with XMRV related diseases."

    Dan Peterson, M.D., medical director of WPI added, "Patients with CFS deal with a myriad of health issues as their quality of life declines. I'm excited about the possibility of providing patients, who are positive for XMRV, a definitive diagnosis, and hopefully very soon, a range of effective treatments options."

    ###

    Reference: Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, and Mikovits JA. Detection of Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome. Online October 8, 2009. Science.

    The Whittemore Peterson Institute for Neuro Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in lifelong disease and disability. www.wpinstitute.org.

    The Lerner Research Institute is home to Cleveland Clinic's laboratory, translational and clinical research. Its mission: to promote human health by investigating in the laboratory and the clinic the causes of disease and discovering novel approaches to prevention and treatments; to train the next generation of biomedical researchers; and to foster productive collaborations with those providing clinical care. More than 1,200 people in 11 departments work in research programs focusing on cardiovascular, cancer, neurologic, musculoskeletal, allergic and immunologic, eye, metabolic, and infectious disease. The Institute also is an integral part of the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University.

    The National Cancer Institute (NCI) leads the National Cancer Program and the NIH effort to dramatically reduce the burden of cancer and improve the lives of cancer patients and their families, through research into prevention and cancer biology, the development of new interventions, and the training and mentoring of new researchers. For more information about cancer, please visit the NCI Web site at http://www.cancer.gov or call NCI's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237).]]>    <![CDATA[Dutch XMRV study: Dr Suzanne Vernon's commentary]]>Playing A Weak Hand Well

    by Suzanne D. Vernon, PhD
    Scientific Director
    The CFIDS Association of America - http://www.cfids.org

    XMRV was not detected in a third follow-up study from a well-characterized cohort of CFS subjects. In a paper published on February 25, 2010 in the British Medical Journal (BMJ) titled, “Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort,” Frank van Kuppeveld and an expert team of microbiologists and clinical investigators failed to find evidence of XMRV. This team used a sensitive polymerase chain reaction (PCR) test that could detect as few as 10 copies of XMRV in 100,000 peripheral blood mononuclear cells (PBMCs) to test PBMCs from 32 CFS patients and 43 controls.

    Please go to this site to read more - http://www.cfids.org/xmrv/022510study.asp]]>    <![CDATA[Chronic fatigue syndrome linked with virus similar to HIV]]>http://www.healthzone.ca/health/newsfeatures/research/article/707537--c

    by Joseph Hall

    Health Reporter

    Often derided as lazy or crazy, for decades people suffering from chronic fatigue syndrome have faced a stigma of doubt, ridicule and legal hassles over their condition.

    But a new study, to be published Friday in the journal Science, shows the ailment is almost certainly caused by a virus, a close relative of HIV, and might be treatable with current AIDS medications.

    Judy Mikovits, the senior study author, says that virtually all of the 101 chronic fatigue sufferers she tested for the study were infected with a retrovirus known as XMRV.

    And the chance that the virus was there by accident in chronic fatigue sufferers was "infinitesimally small," especially since it was not found in the vast majority of healthy people also tested by researchers.

    "It undoubtedly causes some of the symptoms that are associated with it (chronic fatigue)," says Mikovits, research director of Nevada's Whittemore Peterson Institute for Neuro-immune Diseases.

    "It's a true human infection," she says.

    She also says these findings will help bust the stigma that imposes a duel burden on those with the disease, which is also known as Myalgic Encephalomyelitis.

    "We're delighted because the stigma that's gone on with this, the idea that it's somehow psychiatric or you are unable to handle stress...would be gone."

    Toronto lawyer Richard Bogoroch agrees, saying chronic fatigue patients also face legal discrimination, with employers and insurance companies often doubting their disease.

    "I can tell you in my experience these are real complaints and this is wonderful that they've found an objective marker," says Bogoroch, who has fought many chronic fatigue compensation cases.

    "Many people in my experience with chronic fatigue...have had their creditability doubted – they're either malingerers or they're not as injured as they say they are. Their whole credibility and legitimacy has been called into question."

    Mikovits says that, like HIV, the virus probably attacks some elements of the immune system, and is passed on through bodily fluids.

    "It looks to us just like an HIV in that it sets up an immune deficiency (that causes) a spectrum of disorders," Mikovits says.

    "And it plays out for different people in different ways just like HIV."

    But unlike the AIDS virus, which will eventually attack anyone who contracts it, XMRV likely damages only those people with a genetic or physiological susceptibility to the ailment.

    "You can be infected and be well," she says.

    Mikovits says the virus may also attack key mechanisms that form red blood cells, the oxygen bearing workhorses that fuel all the tissues in our bodies.

    "The whole fatigue thing could well be an inability to appropriately then develop red blood cells," she says.

    "So you'd (alter) oxygen carrying capacity which we've seen in a lot of the patients...just plain out oxygen depletion."

    Just as there were vocal detractors of the HIV-AIDS connection when that virus was discovered two decades ago, people will question the retroviral foundation of chronic fatigue, Mikovits says.

    But, she says, all of the various symptoms associated with the syndrome could be caused by immune and blood damage commonly associated with retroviral infections.

    "As I go through the clinical symptoms...there isn't one that I have found so far that couldn't be explained by infection with this virus."

    Canadian Institutes of Health Research scientist Marc-Andre Langlois agrees, saying many of the symptoms associated with chronic fatigue could be explained by retroviral infections.

    Indeed, Langlois, a University of Ottawa retroviral expert, says more and more diseases, such as prostate cancer, have suspected connections with these pathogens.

    "And what's good about that is that because of the efforts in the HIV field, retroviruses are treatable," he says.

    "So it immediately gives the clinicians working in this field new possibilities of treatment. Instead of treating these patients for depression...you could try giving them anti-retrovirals."

    There are some 340,000 people in this country diagnosed with chronic fatigue, according to Statistics Canada.

    Though they vary widely, symptoms can include fatigue, loss of memory or concentration, unexplained muscle and joint pain, headaches, poor sleep and extreme exhaustion after physical or mental exercise.

    And as typical with viral infections, the symptoms of chronic fatigue often come on suddenly and with full force," Mikovits says.

    "There really are outbreaks, where they remember the day they got sick," she says.

    Like the HIV, the fatigue retrovirus would be spread through bodily fluids like blood or semen, and is likely to lurk in the country's transfusion blood supply, Mikovits says.

    "We actually have a couple of patients who likely acquired the disease and the virus...through a transfusion process," she says.

    Mikovits says officials in charge of blood safety will likely have to address the possibility that treatments meant to kill HIV in transfusion products do not get rid of the XMRV virus.

    As a retrovirus some of the drugs that work to tamp HIV levels down in the body would likely help chronic fatigue patients.

    And because these anti-retroviral drugs have already been approved for human usage, they won't be subject to the onerous regulatory testing that could keep them out of human chronic fatigue trials for years, Mikovits says.

    "I think there are likely going to be drugs out there from our experience with HIV that are (government) approved and that we can just start clinical trials with," she says.

    "Treatment is not going to be five to 10 years away, but can be rapid. Within the next year or two."]]>