M.E Sufferers Malta News List<![CDATA[Pure EPA supplement essential for ME]]>
It's a pity that the journalist responsible for a two-page feature on ME in The Times Weekender didn't even mention in passing a natural supplement that a London psychiatrist claims is essential for recovery from ME.

Bassant Puri makes another fundamental claim, namely, that anti-depressant drugs are not the right treatment. If it wasn't for my intervention in these columns, readers wouldn't have been made aware of Prof. Puri's claims.

Rebecca Sultana, of ME Sufferers, Malta continues to cast doubts on Prof. Puri's claims (June 11). Besides saying that VegEPA is his product (which is absolutely not the case - the British Medical Council would have struck him off the Medical Register for such unethical behaviour), she claims he himself doesn't credit this pure EPA supplement with recovery from ME. She also says the cause of ME is unknown, and that VegEPA is not the only product that helps alleviate ME symptoms.

The gist of what Prof. Puri is claiming is on the back cover of his book: "ME is almost certainly a condition resulting from viral and other influences that reduce essential chemicals in the body - EPA will be essential to recovery". Besides recommending changes in lifestyle to promote recovery, his book explains his claim that pure EPA (without DHA) achieves better recovery in ME (and also in depressive diseases) than other fish oil products, and that is why he recommends this specific product - it's the only one on the market with pure EPA.

His claim that over 80 per cent of his ME patients recover with VegEPA suggests that there is more than one mechanism operating in this nervous system disorder. Until more is known about ME, sufferers should read his book and try out VegEPA for at least three months - it has no unpleasant side-effects (as with so many pharmaceutical drugs) and, in my view, they have nothing to lose by performing this therapeutic trial on themselves.

VegEPA and Prof. Puri's book can be bought online from www.igennus.com. Ms Sultana's point that VegEPA can be acquired cheaper from www.thevegepaforme-scheme.com is useful.

Albert Cilia-Vincenti,
Attard

Comments

Mark Falzon wrote:
I have been following the exchange of correspondence related to this subject for over a month and am, to say the least, disgusted by the words Mr Cilia-Vincenti is regurgitating. I simply cannot understand why Albert Cilia-Vincenti has taken such a personal interest in trying to destroy Ms Sultana's work. Furthermore, from the way he is promoting it, it appears that he has something to gain from ME sufferers purchasing this product from www.igennus.com!

I am a carer to an ME sufferer and I fully sympathise with Ms Sultana, and urge her to ignore Mr Cilia-Vicenti's comments and letters. An ME sufferer like Ms Sultana should not waste whatever energy she has on these issues. It is true that certain comments cannot be ignored but some people are too ignorant to understand what a real sufferer goes through.

If Albert Cilia-VIncenti really wants to help ME sufferers he should first read more about the condition, then try to assist ME Sufferers Malta (www.mesufferersmalta.org) in their mission to support local sufferers. Incidentally this support is being carried out by Ms Sultana...

F Cassar wrote:
Well said Mark!! And congratulations to Rebecca Sultana for her invaluable contribution to local ME sufferers. Keep it up, but most of all take care of your health!]]><![CDATA[Re: New hope for ME sufferers as Scientists claim breakthrough]]> http://www.maltastar.com/pages/ms09dart.asp?a=4891

by Dr John H Greensmith

People, all over the World, suffering with M.E. (Myalgic Encephalomyelitis) are, quite rightly. being advised not to build hopes too high for effective treatment, perhaps even a cure for their illness, until the recent American Study (by Lombardi et al, at the Whittemore Peterson Institute, Nevada), suggesting that a retrovirus may be a physical cause of their illness, has been replicated.

There is an important prerequisite before any further research should be undertaken: this should be to ensure that we agree a universal set of diagnostic criteria for M.E. to be used each time, or else the results will not be comparable and firm conclusions could not be drawn.

Until something more exclusive comes along, if any criteria other than the Canadian consensus (Carruthers et al 2003) alone is used there will inevitably be some pollution of the sample of people tested, a reduction of the numbers in each illness category allowed to intrude and, therefore, a dilution in the confidence of being able to extrapolate conclusions to people only with M.E. and not any other illness within the Chronic Fatigue Syndrome (CFS) bundle of illnesses, with which it is erroneously associated and confounded.

To illustrate the problem, using the findings of this landmark American study: one might come to a very different conclusion about the way to proceed if every one of the 68 of the 101 CFS sample, who had XMRV in their blood, had a diagnosis of M.E. and the other 33 did not than if it turned out that none of the 68 at all or only some had a diagnosis of M.E. This demonstrates how important it is to agree a common universal standard to ensure that we are comparing like with like.

Unfortunately, since most doctors and researchers are not using the most discriminatory criteria available, many people with M.E. will be concealed within the CFS group, inflating the numbers and reducing validity and reliability, as we have seen.

In the meantime, all research shows that, if Cognitive Behaviour Therapy and Graded Exercise Treatment have any beneficial effect for people with any illness in the CFS set, they have either no lasting benefit, without relapse (CBT) or make matters worse (GET) for people with M.E. and should not be recommended.

With these concerns in mind, M.E. sufferers will hope that all M.E. charities, worldwide, will call for Government funding to be spent on biomedical research, seeking a physical cause instead of on psychological management techniques and insist on replication using standardisation by the most exclusive criteria.

Progress towards a cure for all these illnesses, not just M.E., has been hampered, for decades, by such lax experimental design of this kind, This landmark research has provided a great opportunity to take firmer control, we must not miss.

Yours sincerely
Dr John H Greensmith
drjohngreensmith@mefreeforall.org
ME Free For All. org
36a North Street
Downend
Bristol
BS16 5SW]]><![CDATA[Il-Vittmi Siekta tal-ME]]> Cirasa,
In-Nazzjon - May 2007

Mejju hu xahar iddedikat ghal aktar gharfien fuq il-kundizzjoni medika - ME. ME tfisser Myalgic Encephalopathy. Jew Chronic Fatigue Syndrome.

Sfortunatament ftit nafu fuq din il-kundizzjoni medika. Dan minkejja li fir-Renju Unit biss hu stmat li hemm xejn anqas minn kwart ta’ miljun ruh ibatu minn din il-kundizzjoni.

Is-sintomi ivarjaw. Jinkludu fost ohrajn ghejja kbira. Li tibqa fuqek minkejja li tistrieh. Ugigh ta’ ras. Ugigh fil-muskoli u l-gogi. Problemi fil-vista. Nuqqas ta’ irqadt. U diversi sintomi ohrajn. Uhud li jbatu mill-ME jirnexxilhom ilahhqu max-xoghol. Ohrajn  tant taffetwhom li jispiccaw go sodda. Erba u ghoxrin siegha kuljum. U xorta jibqghu ghajjenin.

Naf tfajla li kienet atelta. Tikkompeti u tirbah. Ma taqta qalbha minn xejn. Ilum qed tbati minn din il-kundizzjoni. “Illum anki biex sempliciment naqsam triq saret bicca xoghol kbira. Jkolli nieqaf nistrieh”, spjegatli.

L-aktar li tkedd lil dawn in-nies hu in-nuqqas ta’ gharfien li hawn fuq din il-kundizzjoni. Tiltaqa ma tobba u nurses li jafu ftit ferm x’inhi ME.  Sal-lum ma jezisti ebda ezami mediku specifiku li jista jwassal ghad-djanjosi tal-ME.  L-anqas  tezoisti kura efettiva.

Ftit li xejn saret ricerka fuq din il-kundizzjoni. Din il-kundizzjoni qed thalli hafna vittmi siekta. Anki f’Malta. Ma jafux li ghandhom ME. Minkejja li jkunu hadu parir mediku.

F’Malta grupp ta’ nies qed jorganizaw ghaqda ghall min ibati jew jahseb li jbati mill-ME. Qed jorganizaw webmail – http:// www.mesufferersmalta.org . 

Jista issir kuntatt ma dan il-grupp permezz ta’ e mail lil friend@mesufferersmalta.org . Minn qalbi nawguralhom kull success.]]><![CDATA[Everything you wanted to know about ME]]>
The Times Of Malta -  www.timesofmalta.com

Thanks to an excellent pair of companion articles for ME Awareness Week 2008 (The Problem With ME and A Helping Hand For Sufferers, Weekender, May 10), the people of Malta will now know as much as anyone does, anywhere in the world, about this dreadfully debilitating illness.

They will know that ME (Myalgic Encephalomyelitis) is misunderstood, disbelieved, scorned, hard to diagnose, largely invisible, severely disabling and that there is, as yet, no cure. Sadly, there are some more sinister features, not at all exclusive to Malta but which, disgracefully, are common around the world.

They include apathy, lack of investment, secrecy and bullying which promote despair among sufferers and, in the worst cases, suicide.

Ignorance is forgivable if it is accompanied by a willingness to learn but learning comes with research and there is a general unwillingness to invest public money into biomedical research. There is inadequate or non-existent welfare support for ME sufferers while they are unable to work, secrecy among medical and political policy makers and, if not fear, why do ME sufferers feel they have to hide their names and faces? It seems that not only do 18th or 19th century attitudes to this illness still exist but also primitive behaviour that belongs to Neanderthal man.

Well done Malta for speaking up. Let's hope that others around the world follow your laudable example.

John H. Greensmith,
ME free for all.org,
http://www.mefreeforall.org
Bristol, UK]]><![CDATA[Why is it important to raise awareness about Myalgic Encephalomyelitis (ME)?]]> by Nicola K. Reiss MSc, MA.

Why am I making such a fuss about this disease and why should you listen to me? The first reason is that this is an illness, most likely caused by either an enterovirus (like polio) or possibly by a retrovirus (like HIV), which anybody can get – you, your child, your partner, your friend, your lover. From research and experience we know that exercise of any kind makes the illness worse. Your doctor doesn’t know this. Doctors around the world are trained neither to recognize the symptoms of ME, nor how to treat it. There is no cure. Your government is spending no money on bio-medical research into prevention or treatment of this devastating neurological illness that affects more people than MS.

The suicide rate for people with ME is unacceptably high; people have died of ME in epidemics, but most deaths from ME go unrecorded as they are (like deaths from AIDS) due to related conditions such as cancer and heart disease.

The second reason to listen is to protect children and young people with ME from dangerous treatment, from an unnecessary worsening of their condition, and from possible forced removal from their families (yes, it
happens). Children are particularly vulnerable with this illness, and children as young as five have been known to get it. Because there are as yet no easy tools for diagnosis, such as a simple blood test, children are frequently not believed when they complain of feeling unwell. In both the UK and the USA there are cases of social services forcibly removing children from their families and placing them in psychiatric units, as if they were mentally ill.

Having just given away kittens I am living with an upset and bereaved mother cat – I cannot begin to imagine the anguish of caring parents whose sick child has been forcibly removed from their care; yet this is happening in our societies, to children sick with Myalgic Encephalomyelitis. ME is (like MS) a neurological illness, identified and classified as such by the World Health Organization (WHO ICD- 10 G93.3), yet misinformation and obstruction by psychiatrists and insurance companies has blocked bio-medical research into the condition, and has ensured that medical doctors remain in ignorance, or are  unable to treat ME patients appropriately.

If you are in any doubt about these statements I encourage you to read the Professor Malcolm Hooper report (http://www.meactionuk.org.uk/magical-medicine.pdf) or the book Osler’s Web by Hillary Johnson (available from Amazon). Look up the names of Sophie Mirza and Lynn Gilderdale, young women both dead from ME, both mistreated by the health authorities in the UK. Read about Alison Hunter who died of ME aged 19 in Australia, or read about teenager Ryan Baldwin, forcibly removed from his family by social services in North Carolina on 1/23/2009 (now back home and doing well).

ME may not kill you straight away; it is not as scary as
ebola or malaria or dengue fever; but it will take away your life as you know it. Although some  people only suffer from mild symptoms and are able to continue working and enjoy some kind of (usually restricted) social life, approximately 25% of people with ME are completely bedridden, living in darkened rooms, unable to feed or clean themselves, totally dependent on family members. These are the people with ME whom you don’t see. Others, like myself, are visible in the street once in a while (I have the energy, on average, to leave my flat twice a week), but we have no social life – we can no longer visit cafés or restaurants, we cannot enjoy a walk on the beach or a day out shopping or a family meal. These simple activities are too painful. 

What can you do?

Learn to recognize the symptoms of ME – early diagnosis may prevent the illness from becoming severe. Understand that exercise makes the illness significantly  worse. If you suspect that you, or someone you know, might have ME, stop all exercise and do whatever it takes to get a correct diagnosis.

Symptoms of ME include (but are not limited to): dizziness, brain fog (a fuzzy feeling in your head to varying degrees), orthostatic intolerance (you find it uncomfortable to remain standing for more than a few minutes), difficulties with concentration and memory, lack of energy, a heavy feeling or pain in muscles, post-exertional malaise (i.e. exercise makes you feel worse, not better), a general feeling of being unwell (similar to flu or a bad hangover), headaches, extreme fatigue that is not relieved by sleep, difficulties sleeping, digestive problems, extreme sensitivity to light and noise.

Push for government funding into bio-medical causes of, and treatment for, ME. Contact your MP, your senator, your congressman or woman and ask them to ensure that  government funds go into the right kind of research.

In the UK vast sums of money have been wasted on research into trials of counseling and exercise for people with ME. Would you expect counseling and exercise to help people with MS, lupus or AIDS? No! Nor will they make any difference to people with Myalgic Encephalomyelitis. Government funds should be spent on research into ME in the same proportion as they are spent on MS, lupus, AIDS, or similar diseases. All we ask for is equal treatment – in provision of research funds, medical care, and social services.

One last word – what on earth is “chronic fatigue syndrome”?

“CFS” is an idea constructed by psychiatrists and insurance companies to belittle the serious illness Myalgic Encephalomyelitis in order to avoid expensive insurance payments or disability support payments.

The correct name for the disease, as  listed by the WHO, is Myalgic Encephalomyelitis. Fatigue is a common symptom of many illnesses – cancer, MS, AIDS, lupus, flu, and so on. It is no more a defining feature of ME than it is of MS.

Unfortunately many people have been misdiagnosed with “CFS” by badly informed doctors when in reality they have other illnesses that are difficult to diagnose, such as cancer, lupus, MS, etc. For this reason it is urgent that doctors learn how to correctly diagnose ME. For more information the work by Dr Byron Hyde is particularly useful (see: http://www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf)


ME is not limited to Europe, Australasia and North America. I became ill while working in East Africa; cases have been reported in India, and there are support groups for people with ME (PWME) on Chinese social networking sites.

If you would like to learn more, I recommend these websites:

Nightingale Research Foundation (Dr Byron Hyde) - http://www.nightingale.ca/index.php?target=home

The Hummingbirds’ Foundation for M.E. - http://www.hfme.org/

ME Action UK - http://www.meactionuk.org.uk/

Invest in ME - http://www.investinme.org/index.htm

Whittemore Peterson Institute for Neuro-Immune Disease - http://www.wpinstitute.org/

National Alliance for Myalgic Encephalomyelitis - http://www.name-us.org/

The Young ME Sufferers Trust - http://www.tymestrust.org/

The Grace Charity for M.E. - http://www.thegracecharityforme.org/index.asp

Please repost freely (without changes) and pass this message
on to friends and family!]]><![CDATA[ME sufferers are left in the dark]]>www.timesofmalta.com

by Dr. John H. Greensmith

The forthcoming Royal Society of Medicine (RSM) conference, being held in Bristol on September 18 with the theme Chronic Fatigue Syndrome, is an unwelcome example of how a small but very influential minority of the medical profession is stubbornly refusing to listen to the very group of patients it claims to serve.

Even before an identically-named conference was staged in London last April 28, this one had already been timetabled with the same leanings, some of the same participants and lectures. Both would always go ahead despite an unprecedented amount of communication - perhaps five or six times the usual for other ME issues, with some very ill people moved to write for the very first time - to the RSM, the press; one eminent ME specialist even wrote to the Queen.

The serious concerns now, as they were in April and as they will be in the future, if the RSM persists in ignoring ME sufferers, are that there is a bias towards a psychiatric view of the illness, promotion of treatments intended for illnesses of a psychiatric origin, in line with the NICE guidelines, a preference for the name Chronic Fatigue Syndrome and a lack of consideration and funding for more promising biomedical research.

The majority received no reply at all. Those who did will have been frustrated or angered, rather than comforted or appeased at the abrupt, defensive, arrogant tone delivering, sometimes, factually incorrect content about the conference's organisation and content.

Those who were told that there are some events to which ME patients are invited will wonder why they are excluded from any.

It did go ahead, the effect of a small peaceful protest of a dozen or so quite severely-affected people, some in wheelchairs, thwarted by the simple device of closing the gates at one entrance to the building.

ME sufferers will wonder why one of the speakers, this time, is billed as a "person with CFS/ME", when her principal role is as chief executive of the sister group of the only other ME organisation to have been invited to speak because they are more sympathetic to the NICE proposals than every other ME group which, without exception, have published responses of varying degrees of opposition.

They will also hope that there is not a repeat performance of the difficulty of and delay in, transcripts and videos of the proceedings becoming available.

I anticipate an even greater clamour of protest this time than last, perhaps with new voices raised but, I predict that these few will still decide the fate of ME sufferers without the proper scientific mandate for doing so.

Dr. John H. Greensmith,
drjohngreensmith@mefreeforall.org
ME Free For All,
Bristol,
UK

]]><![CDATA[A treatment for ME]]> www.timesofmalta.com

The excellent feature (Weekender, May 10) on ME (myalgic encephalomyelitis/chronic fatigue syndrome) provides most welcome and timely awareness of this debilitating condition which can destroy individuals and families.

However, the big good news for ME sufferers was not in this article. Basant Puri, consultant at the Imaging Science Department of the Medical Research Council's Clinical Sciences Centre at the Hammersmith Hospital, and head of the Lipid Neuroscience Group of Imperial College, both in London, claims that a special extract of fish and virgin evening primrose oils (omega-3 and omega-6 fatty acids) will achieve recovery from ME.

Prof. Puri is a leading authority on the effects of lipid changes in walls of brain cells, and claims that the increasing incidence of depression, ME and ADHD (attention-deficit hyperactivity disorder) in Western countries is related to poor diets.

Prof. Puri believes that depression is not the root cause of ME, and that antidepressants are not the right therapy. He believes ME results from viral and other influences that reduce essential chemicals in the body, and that it can be treated in a natural cost effective way. He claims that generic cod liver and fish oils, and generic evening primrose oil, are ineffective and a waste of time and money.

His research on successful natural treatment of ME, of all forms of depression, and of ADHD, has been conducted using a special patented purified extract of fish oil (eicosapentaenoic acid/EPA). This is only available from one source in the UK. This unique marine and plant lipid product is called VegEPA.

You can get Prof. Puri's book, Chronic Fatigue Syndrome - A Natural Way To Treat ME", and the VegEPA product from this website www.igennus.com.

Anyone having difficulty understanding the above or having problems with getting Prof. Puri's groundbreaking book and the VegEPA product he recommends, can contact me on acvincenti@onvol.net.

Albert Cilia-Vincenti
Attard
Malta]]><![CDATA[Always tired.... at the age of 17]]> of Daniela Attard Bezzina’s article published on L-Orizzont (19/05/08) 
Ta’17-il sena… dejjem ghajjiena

Looking around this young girl’s room in a house in Marsascala, you notice the trophies she has won for Athletics. Also in the room is a wheelchair, which reminds you of a broken dream and a life turned upside down. This is part of the life of Denise Vella. A girl I had the privilege of meeting a few days ago.

After 20 years in Journalism, there are very few stories that shock me nowadays. However my mind has not stopped thinking about Denise. At first glance you would say she was a model – tall and slim, blue eyes and long blonde hair down to her waist. I asked her to go further up the stairs so I could interview her in a quieter place. She replied she didn’t have the energy to do that.

I knew my interview was going to be with a girl who suffers from a condition known as M.E., but I did not realise this condition could be so restrictive. In fact, up to a few days ago I was one of the thousands of Maltese who did not know what M.E. was. Today I write this article in the hope that more people become conscious of M.E. and also to understand and sympathise with those who have this condition.

Till the age of 13, Denise’s life was going smoothly. A good scholar and a promising athlete in the Junior Elite Athletic Scheme of the Malta Amateur Athletic Association. She took her training very seriously as can be seen by the honours received. A happy girl who loved the company of friends.

In December 2004, Denise went on a picnic with friends, but did not enjoy herself because she started to feel pain in the stomach and vomiting. Back at home, she spent four days in bed till she felt better, returning later to her athletics’ training. However, from the very beginning she could not train at the same level as before. She felt very tired and experienced pains in her legs.

Her sports’ doctor advised her to have a break from athletics for a month. Even though she rested during this time, Denise still felt very tired, without energy and had bouts of diarrhea. When I say “tired” and “without energy” I mean it in the fullest sense of the word.

Denise also told me that sometimes when she is walking along, she would stop and sit on the pavement, as she felt she could not go a single step further. To cross the road she dragged her feet so slowly that the motorists would beep their car horns for her to move faster, being young she should be able to. During Mass she couldn’t even kneel or stand up.

When the sports’ doctor saw her condition, he said she was beyond his care and suggested her parents take her to see a Pediatrician. “For months we have being trying.”          said Denise’s mother, Sylvana. “The Specialist tested for different diseases and all came back negative. I had heard of M.E. and told the Specialist that I suspected that Denise may have this condition. At the end of September 2005 these suspicions were confirmed.”

At first Denise did not want to accept this condition.  Her parents did a lot of research regarding M.E, but Denise herself did not want to know. In the meantime, Denise was attending fourth year of high school. She found it extremely difficult to concentrate, but still managed to do well in her mid-year exams.  “As soon as I arrived home from school I spent several hours sleeping,” Denise told me. “But when you have M.E. sleeping doesn’t make you less tired. When you awake you feel the same as before or even worse. You feel like you have been run over by a truck, stuck to the bed and cannot get up.”

After the mid-year exams her health worsened, so much so that sometimes she had to rely on a wheelchair. She also felt new symptoms like joint and muscle pains and migraines; even certain smells irritated her, as well as noise and light. Once Denise experienced tunnel vision and could not pronounce her words properly. She started to panic and her parents rushed her to the hospital.  Later they found out that these were also symptoms of M.E.

With all these symptoms Denise finally accepted her conditions and changed her lifestyle to give the body some rest. During the final year of school, with the teachers’ support, Denise was able to attend a few lessons per day then go back home.

Her parents wished she would postpone her ‘O’ level exams but Denise was determined to do the exams with her friends at school. In fact, Denise did nine exams at once and passed them all with high marks. Here I would like to mention that the MATSEC Board understood her situation and gave her full support.

Of course, Denise put a lot of effort and energy into these exams, and as a result had to spend the whole of summer recuperating. Last September she started attending Sixth Form at De La Salle College, where she received much co-operation from the Principal, the teachers and her friends.  A lift was also installed so that Denise would not have to climb the stairs then be too tired for her lessons.

In Sixth Form Denise is studying Chemistry, Biology, Physics, Philosophy and English. She attends the lessons but does not have the energy to do her homework. On the weekends it is rare for her to go out of the house, so that she can conserve her energy for the weekdays. Her friends do not visit her at home so as not to tire her.

As part of her project for the Systems of Knowledge subject, Denise decided to launch a campaign to raise awareness of M.E. among the Maltese, as she felt this condition is not well known here. After this idea was accepted by her teachers, Denise went about her campaign and distributed posters and leaflets about M.E. in schools, clinics and hospitals. With the help of photographer Brian Grech, Denise produced interesting and effective leaflets using the slogan  “I suffer from your inability to see my disability”. May is the month dedicated to M.E. Awareness, and 12th of May is International M.E. Day.

Denise realises that so far there is no cure for this condition, but she knows that many are “cured” in the same inexplicable way that started them off with M.E.  Her dream is still that of studying Medicine and graduating as a Doctor. “I am always optimistic,” said Denise, “I live in the hope that one day I may come out of this condition and can help others who also suffer from it.”

Denise, I will pray every day so that next time we meet, I will see you full of energy, running a race with your hair blowing in the air, as you appeared in that photo when times were better for you.

What is this M.E.?

The letters M.E. refer to a condition known as Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. In the United Kingdom alone there are no less than 250,000 who suffer from it, including a lot of children.

There is no test to diagnose M.E.  In fact, a diagnosis usually is found whilst testing for other conditions by the process of elimination. Unfortunately, it often happens that a person suffers from a variety of symptoms for at least six months before M.E. is even considered. This doesn’t help the sufferer, as rest is crucial especially at the onset. The patient is not sure why he is suffering with the symptoms and may not get enough rest.

It is important that those who suffer from M.E. listen to their bodies and rest when needed. M.E. is not a form of mild depression that disappears with a positive attitude. If you ignore it, you are not helping yourself.

So far there is no cure for M.E. and till the exact cause is found, there is not a possibility that a cure will be found. However, there is medication that could ease the symptoms of M.E. The medications don’t have the same effects on everyone, and so each person has to find his own solution for his own health.

The first symptoms of M.E. are usually similar to influenza. The difference being these symptoms don’t go away, and in some cases become worse. Often the patient suffers from extreme tiredness that doesn’t lessen with rest or sleep. Other symptoms include pain in the muscles, nerves and joints; sleeplessness; swollen glands; migraines; low fever; sensitivity to strong light, noise and smells; intolerance to certain foods; nausea and indigestion; diarrhea or constipation; lack of concentration; lack of recent memory recall; dizziness; blurred vision and loss of balance.

Symptoms can change with time and not all who suffer with M.E. have all the symptoms. Apart from that M.E. in one person can be light, whereas another person may have severe symptoms. In fact, some still go to work, whilst others are bedridden and need constant care.

Many with M.E. in time may feel better, but not as well as before they had this condition. It is estimated between 6 and 12% of sufferers in the United Kingdom recover within two years, but around 60% never regain the strength they had before, and up to 20% remain permanently disable due to M.E. For better health in the long run, an early diagnosis is important.

•    For further information or help, you can write to the ME Sufferers Association Malta, PO Box 25, Pieta, PTA 1310 or visit the website – www.mesufferersmalta.org.]]><![CDATA[When doctors cannot diagnose disorders]]>www.timesofmalta.com

by Nikki Abela Mercieca

Nicola Reiss woke up one Boxing Day feeling extremely unwell. She had pain all over, her ribs ached and she was running a fever.

“It was as though I was involved in a boxing match,” she recalled.

The doctors thought the 51-year-old woman had malaria. She was lucky to be a foreigner in Rwanda as, according to her, foreign patients are treated seriously there.

However, endless tests would prove that Ms Reiss, who now lives in Malta, did not have malaria. Two years of fatigue and pain later, one brave Maltese doctor told Ms Reiss she had Myalgic Encephalomyeltis (ME).

The problem with this condition, also known as chronic fatigue syndrome or post-viral fatigue syndrome, is the controversy surrounding it. There is no test to diagnose the syndrome and diagnosis is only made when a certain set of symptoms are displayed. These can vary in type and severity.

While, on one hand, doctors seem reluctant to diagnose this condition because the science around it is not as yet concrete, patients feel misunderstood and unaccepted.

Although local figures on the number of people affected by ME are currently unavailable, some 250,000 people are said to suffer from the condition in the UK alone.

Beatrice Gatt, spokesman for the ME support group Malta, said the hospital should have an inter-disciplinary outpatient clinic and an outreach programme for better medical understanding. The support group also called for government recognition for disability benefits.

Patients who spoke to The Sunday Times have voiced frustration that many doctors do not bridge the condition to the symptoms they complain about.

“Doctors don’t make a distinction between ME and people who are tired for other reasons,” Ms Reiss said.

Another patient, who preferred to remain anonymous, said: “When I suggest my hoarse voice may be caused by ME, they just shrug it off.”

This is not the first time the medical world struggled to accept a condition that science had not yet proven. At the beginning of the 20th century, the now renowned asthma was seen as a psychosomatic disease – one that is mainly influenced by the mind.

Treatment involved psychoanalysis as its primary component. A child’s wheeze was seen as a suppressed cry for his mother.

Psychoanalysts thought that patients with asthma should be treated for depression. This theory was eventually refuted and asthma became known as the inflammatory condition it is treated as today.

Although the cause of ME is not yet known, there are various theories – but none is proved. A popular theory is that a viral infection may trigger the condition.

The latest scientific breakthrough linked a second type of mouse virus to ME.

Although the findings do not prove the virus causes ME, the scientists found evidence of murine leukemia virus in 86 per cent of ME patients they tested, but in fewer than seven per cent of healthy blood donors.

This has also raised questions about the safety of blood donations from ME sufferers, as international talks of banning donations from ME sufferers are underway as an interim measure.

ME has been classified as a nervous system disorder by WHO, and although the term “encephalitis” suggests inflammation in the brain or spinal cord, there is no evidence to support this.

It is characterised by chronic fatigue, associated with other variable symptoms which include widespread muscle and joint pain, sleeping difficulties and depression.

The severity ranges from one sufferer to another, and while some people may live a relatively normal life, others like Ms Reiss are unable to work due to the severity of their symptoms.

Although the controversy exists, people tend to agree on one thing: patients are hurting. As one doctor who spoke to The Sunday Times put it, “We cannot endorse what we cannot see. What we know for sure is that they are suffering.”

To read the comments under this article, please go to: http://www.timesofmalta.com/articles/view/20100829/local/when-doctors-cannot-diagnose-disorders]]><![CDATA[Feedback to 'A treatment for ME' letter]]>Research into ME

By Rebecca Sultana
www.timesofmalta.com

For Maltese sufferers to see a letter in the newspaper regarding ME, especially written by a medical professional in Malta, is a treat, savoured like manna from heaven (A Treatment For ME, Albert Cilia-Vincenti, May 16). ME sufferers are aware of how complex and confusing their illness is. Although they feel unjustly treated and petrified when doctors try to shun ME, in the hope that it will disappear, they can also empathise with the fact that since there is no proper diagnostic test for ME, the wide array of symptoms ME manifests is very daunting.

However, I must also point out that Basant Puri never claimed that his treatment or product called VegEPA "will achieve recovery from ME".

In 2002, Prof. Puri and his team from Hammersmith conducted pioneering research into the brain chemistry of people with ME, which made use of a type of brain-imaging technology called MRS. Results showed that sufferers (compared to healthy volunteers) had a higher level of a substance called choline (a nutrient of the Vitamin B complex), which would indicate a deficiency of essential fatty acids (EFAs) in the brain and also suggests a problem with fatty acid metabolism in the brain. According to Prof. Puri these increased levels of choline were "precisely what we would expect to see following a major viral infection".

He believes that the fatty acid supplements with a high level of EPA, together with an nutrient rich diet, could benefit ME sufferers since it regulates chemical imbalances in the brain; thus helping to alleviate symptoms like impaired concentration, short-term memory, psychomotor function, cognitive functioning, difficulty with information processing. Plus it also has anti-viral properties that strengthen the immune system.

During Prof. Puri's talk called A Natural Way to Manage ME/CFS in May 2007, he emphasised that he does not know all the answers and that more research is needed before definitive recommendations can be made.

The VegEPA for ME Scheme has almost 4,000 members, all ME sufferers, who find that VegEPA has had a positive effect and provides relief or marked improvement in their cognitive abilities and sleep. However, Prof. Puri also states that if an ME sufferer does not have a deficiency of EFAs, the supplements will not help. This is important to bear in mind because the cost of the VegEPA is not cheap.

In the meantime, great interest has been shown in Prof. Puri's research. The UK national charity ME Research UK that funds biomedical research into Myalgic Encephalomyelitis, together with the charity ME Solutions and the MRC Clinical Sciences Centre (Imperial College London) have jointly funded the resumption of Prof. Puri's important study.

Although there is no government funding for biomedical research in the UK, ongoing research projects are being made possible through charitable trusts. Some of these projects can be viewed at www.meresearch.org.uk/research/projects/ongoing.html. Hopefully one of these projects will help shed light on the physical cause of ME and in turn suggest a definite and permanent cure. Who knows, Prof. Puri's research might prove to be the answer!

If one wishes to try VegEPA, may I suggest that it be bought securely through The VegEPA for ME Scheme www.thevegepaformescheme.com

Rebecca Sultana
ME Sufferers Malta
www.mesufferersmalta.org]]><![CDATA[New hope for ME sufferers as Scientists claim breakthrough]]>http://www.maltastar.com/pages/ms09dart.asp?a=4891

US scientists are claiming to have made a breakthrough in understanding what causes the condition known as chronic fatigue syndrome or Myalgic Encephalomyelitis (ME).

M.E. is defined by the World Health Organisation as a neurological illness. ME causes chronic fatigue and muscle pain, impairs immune system, does not improve with sleep and more women than men suffer from it. There are currently 800 ME sufferers in Malta.

It is estimated that there are 17 million people worldwide suffering from ME.

Scientists research 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, BBC reports.

But experts cautioned that the study did not conclusively prove a link between XMRV and ME. However, the discovery raises hopes of new treatments for the condition.

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

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

Yet, scepticism exists. Dr Richard Grunewald, a consultant neurologist at the Sheffield Teaching Hospitals NHS Foundation Trust 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.

Read more: 800 Maltese Myalgic Encephalomyelitis with no social benefits - http://www.maltastar.com/pages/ms09dart.asp?a=1865]]><![CDATA[Feedback to 'Understanding And Treatment Of ME Sufferers' letter]]>Treatment for ME sufferers
By Rebecca Sultana

I refer to Albert Cilia-Vincenti's letter (Understanding And Treatment Of ME Sufferers, June 6) and wish to clear up some misunderstandings. My sole intention was to put all the cards on the table.

He stated that VegEPA "will achieve recovery from ME", a feat that neither Prof. Puri credits his product for. My intention was not to instil doubt in Prof. Puri's product. Why would I do such a thing if a number of sufferers have reported feeling better after using VegEPA?

I also joined Prof. Cilia-Vincenti in promoting the product. I also mentioned The VegEPA for ME Scheme provided by my friend Lynne Kersh ( www.thevegepaforme-scheme.com ), who sells the product at a special price and donates 50p of each pot sold, to ME Research UK.

Regarding his point that Dr Puri or VegEPA was not mentioned in the Weekender feature, I have no control over what a journalist writes in his/her article. I gave the input the journalist asked for. Besides, VegEPA is not the only product or remedy that can help alleviate some ME symptoms.

Desperation has led all of us ME sufferers to try the various treatments and remedies that claim to be effective in managing ME.

Due to our high susceptibility to side effects and increased sensitivity to treatments, some have even paid a hefty price of an added symptom or a worsening of symptoms. Not to mention the hole in our very tight pockets. Still, we never give up! To date, due to a lack of funding for biomedical research, the cause of ME is still unknown, and no cure has yet been found.

Therefore, any treatment's positive or negative effect on an ME sufferer is determined by trial and error; so it is only fair that s/he gets his or her facts right before embarking on any treatment. I for one have had enough of being a guinea pig!

I am all in favour of trying VegEPA even if it is not a definitive cure for ME.

If it helps alleviate even just one symptom of the dreadful condition, I feel it is worth trying.

Rebecca Sultana
ME Sufferers Malta,
Msida]]><![CDATA[Re: 'Me' in ME]]>www.mefreeforall.org

by Dr John H Greensmith

People affected by M.E (Myalgic Encephalomyelitis), on Malta, are fortunate to have the comforting support of a group like ME Sufferers Malta, which not everyone else in the World has.

The Malta Independent on Sunday article ('Me' in ME, Malta Independent on Sunday, 10 May 2009) is a welcome contribution to raising awareness during the week dedicated to it.

Rather than admit ignorance, or helplessness, there is a tradition, amongst both doctors and patients, of denial and of soldiering on, in defiance of pain which, experience shows, frequently turns out to be the worst thing to do.

As well as improving knowledge about and public perception of M.E., it is essential to jettison some myths, once and for all, which are hampering progress towards a cure.

Readers will see how inaccurate is that old chestnut 'Yuppie flu" by looking at the diversity of the M.E. sufferers featured as case studies in your article. M.E. affects both sexes, all age groups and social classes all over the world. Furthermore, if you think of the duration of a bad bout of flu, from take off, as an Easy Jet or RyanAir short hop, M.E. is a long haul flight which, most often, never lands.

Other myths that need dispelling are that M.E. is a psychiatric illness, attention-seeking, laziness or just a bit of tiredness.

Although it is possible to have a psychiatric illness, in addition to M.E., there is no evidence of a greater incidence of a psychiatric history or concurrent psychiatric illness amongst M.E. sufferers than in the general population; nor is one a prerequisite for the other.

Those who still think that M.E. is an excuse for laziness may ponder how smart a move this might be: Get a piece of paper and put down, on the credit side, how much income you will have to depend on while ill. In the UK this is often less than £5,000 per annum or £100 per week (incidentally, less than the National Minimum Wage for a 40-hour week, or what teenagers get for doing paper rounds and odd jobs). Now, compare this with loss of salary, for even an average earner, before you start considering highly paid professionals. This is quite apart from the other factors, which are not measurable in financial terms but should go down on the debit side of your balance sheet: social isolation, dependency, loneliness, shattered relationships - the list goes on - in addition to the disabling painful physical symptoms of the illness itself. I understand that you may even be financially worse off in Malta.

Now consider that, if M.E. is just chronic fatigue, as is often erroneously believed, instead of being an extremely disabling neurological illness, having a range of symptoms including muscle pain, poor concentration and dizziness, this Research Psychologist, diagnosed in 1988, should have had enough sleep with (*check my figures, 21 x 365.25 [leap years, remember] x 8 =) 61,362 hours. It hasn't worked so far. M.E. really is a great deal more than just tiredness and needs to be treated as such.

M.E. is a discrete neurological illness, named in the 1950s,recognised by the world Health Organisation in 1969, for which there is an abundance of evidence.
There is, as yet, no cure. The best medical attention any M.E, sufferer can have, as I have had, is the support of a good GP for symptom relief, such as pain or difficulty sleeping or whatever you have. There is no evidence that anything else -- orthodox, complementary or radical -- works. Cognitive Behaviour Therapy (CBT) has no enduring benefit for people with M.E.; Graded Exercise Treatment (GET) makes a majority worse, sometimes irrecoverably so and you'd be better to keep your money in your pocket than invest in any of the others. The best agreed common sense plan is pacing, which is really doing as much as you can manage without overdoing things and then resting or sleeping as required. But, it does require some discipline to stop when you know you should --- I'm the World's worst for not practising what I preach!

I am neither an optimist nor a pessimist; I'm a realist. I think it is best to recognise where we are and have a determination to improve things. I do believe that it is only a matter of time before we do get that test --- maybe a blood test or a scan -- just as they did for illnesses like MS, which were once written off or dumped in the psychiatrists dustbin --- but it's never going to be soon enough for those people whose lives have been devastated by this extremely disabling neurological illness, which is so much more than mere tiredness and needs to be recognised as such.

To do their bit towards M.E. Awareness Week (10 - 16 May 2009) and beyond, on Malta, carers, relatives and friends of M.E. sufferers, who are housebound or not so mobile, may like to download, print off and hand deliver some of the stunning eye-catching posters, designed by fellow sufferer Joss Morton for maximum display all over the Island. You can download the posters directly here http://tinyurl.com/paaqm3 or by contacting info@mesufferersmalta.org.

To join M.E. Sufferers Malta click http://www.mesufferersmalta.org/contactus.aspx or write to M.E. Sufferers Malta, P.O. Box 25, Pieta PTA 1310 Malta.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith

ME Free For All. org
36a North Street
Downend
Bristol
BS16 5SW
United Kingdom
+44 (0) 117 956 0150]]><![CDATA[Facebook page set up for ME sufferers (1)]]>
http://www.timesofmalta.com/articles/view/20100606/letters/facebook-page-set-up-for-me-sufferers-1

by Rebecca Sultana

Following the publication of our article 'Take ME seriously please' (The Sunday Times, May 9), Simone Manduca left a message on our website's contact form suggesting we open a Facebook page for ME Sufferers Malta.

Two members of our support group, Rosanne Caruana and Nicola Reiss, have taken the initiative and recently set up a Facebook page for people with ME (Myalgic Encephalomyelitis), which should be a great extension to our website as regards raising ME awareness in Malta and abroad, providing information on ME research and offering support to others who suffer from this dreadful disease, their families and friends.

Since people with ME are often house-bound and unable to venture out and socialise, we hope this page will target the loneliness and sense of loss many have to endure.

The ME Sufferers Malta Facebook page is a 'closed' group - to avoid, as Ms Reiss explains, "unscrupulous people who use these groups for advertising junk cures"; but we welcome all to join.

We also wish to take this opportunity to congratulate Maria Blackburn on setting up the Multiple Sclerosis Malta Facebook group. We also thank her for sharing her story to raise awareness about MS.

We can easily empathise with her daily battle and the ordeal of living with a debilitating illness, and admire her spirit and perseverance in the face of cruel adversity.

Rebecca Sultana,
ME Sufferers Malta,
Msida]]><![CDATA[Re: Take ME seriously please]]>www.timesofmalta.com

Biomedical research should seek better understanding, treatment of ME sufferers

by Dr John H Greensmith

Rebecca Sultana of ME Sufferers Malta (The Sunday Times, May 9) is quite right to focus attention on the priority for biomedical research to gain a better understanding of ME (Myalgic Encephalomyelitis). Such research may suggest appropriate treatment towards recovery, hopefully a cure, for this dreadfully disabling illness which keeps millions of people around the world, invisible and isolated.

There is, already, incontrovertible post-mortem evidence of inflammation of the spinal cord of people, who have died after having ME, like Lynn Gilderdale, Sophia Mirza and Annabel Senior, whom we mourn in the UK, and many others around the world. We need to discover which biological markers people living with ME have in common and which make it a discrete neurological illness, apart from the indiscriminate Chronic Fatigue Syndrome (CFS), which contains a number of heterogeneous conditions with a variety of physical and psychiatric origins.

It is scandalously neglectful and irresponsible to be pouring all our research money into the management techniques of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET), as though ME is a somatoform illness - as the American Psychiatric Association is trying to reclassify it in the next edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5) - when all research evidence to date shows that CBT is ineffective for ME sufferers and GET is potentially harmful.

We will not find if we do not look and we are not funding anyone to look.

In the meantime, ME Sufferers Malta is among the best in the world, especially in proportion to its size and resources, at offering support to its fellow sufferers and has earned due respect and affection among the ME community worldwide.

Dr John H Greensmith,
ME Free For All.org,
Downend,
Bristol,
UK

http://www.timesofmalta.com/articles/view/20100523/letters/biomedical-research-should-seek-better-understanding-treatment-of-me-sufferers

Article © Allied Newspapers Ltd]]><![CDATA[The invisible illness]]> www.timesofmalta.com

ME (Myalgic Encephalomyelitis) is one of the illnesses included among those for consideration during Invisible Illness Week (September 8-14, 2008). An amazing 96 per cent of all illness is invisible and an equally incredible percentage of people with ME remain hidden, unaccounted for and unrepresented.

Some of the reasons for an illness being invisible are obvious. People, who are too ill to go out, or only on occasion when they feel a little better, remain behind closed doors and, ironically, may contribute to it by staying in to avoid disbelief, ridicule and prejudice from an ignorant population and, sometimes, doctors who prefer to say they must be malingering or attention seeking rather than admit they do not understand it.

No one knows, for sure, how many people have ME but it is likely that it is towards the lower end of the UK Department of Health's estimate of between two and four people in 1,000. The range is probably so large because it also includes all illnesses with chronic fatigue as a symptom. The resulting total not only "hides" the number of ME sufferers within CFS (Chronic Fatigue Syndrome)/ME patients but distorts any conclusions from experiments in which they are used.

So, where are they? It is so important to find these missing people for a number of reasons, not least to know that they are not alone. We can't know how many people are in any distinct group until we define its characteristics (blue eyes, Sagittarians, over six feet tall etc.) and exclude those which do not fit (all other colour eyes, zodiac signs, under six feet tall etc).

The bigger the sample of people having the most pure definition, the better picture of what we are dealing with will emerge and the more likely we are to find a common physical cause which should, in turn, suggest effective treatment towards cure.

In the meantime, people with ME need advice about the best treatments available for symptoms such as pain, or to aid sleep and they need support with practical matters, including benefits and the opportunity to meet other people in the same boat.

ME Free For All.org is among those saying that we should make this Invisible Illness Week the one when we take ME off the list of invisible illnesses because it no longer remains behind closed doors.

Dr. John H. Greensmith,
ME Free For All. Org,
Bristol,
UK]]><![CDATA[800 Maltese Myalgic Encephalomyelitis with no social benefits]]>
by Fabrizio Ellul

There are around 800 Maltese Myalgic Encephalomyelitis sufferers in Malta who do not have access to any social benefits, maltastar.com has learnt.
 
Myalgic Encephalomyelitis (M.E.) is defined by the World Health Organisation as a neurological illness. Its symptoms may vary from sore throat to speaking problems and memory complications.
 
“M.E sufferers are, presently, not being taken care of by the welfare system, because although M.E is considered a disability abroad; it is not mentioned as one of the listed conditions catered for by the Maltese Social Security Legislation,” Ms Nicola Reiss, spokesperson for mesufferersmalta.org explained to maltastar.com.
 
Mesufferersmalta.org is a web-based organisation aimed to respond to enquiries about M.E. and to “do advocacy work, to ensure that people with ME get the benefits they deserve like other disabled people.”
 
“The lack of support provided to sufferers by the medical profession is the cause of much frustration and emotional distress,” Reiss told maltastar.com. At present there is neither a medical diagnostic test for M.E. nor any known specific treatment or cure.
 
According to statistics, the “commonest age of onset appears to be between 20 and 40 years.” However, this illness does not hold to any age bracket, Ms Reiss explained, both children and adults are at risk of contracting this illness.
 
Moreover, without a cure, the prospect for M.E. sufferers leading a normal life is also slim with many feeling hopeless. “Many take pain killers; some turn to alternative therapies. Many learn how to ‘pace’ their activities in order to stay well enough to function.”
 
Since, M.E. is not listed as one of the conditions covered by the Social Security legislation, the “M.E. sufferers in Malta” are claiming that local M.E. sufferers are being denied the benefits and services offered to people with other disabilities.
 
“Although we have written letters and complained a couple of times, our plea has not been given much heed,” Reiss added, “Not being a listed as a condition means that ME sufferers are not eligible to receive help which many urgently need, such as financial assistant, community care, and the blue sticker for disabled parking.”
 
“Other people with disabilities less severe than those affected by ME are eligible – thus we feel discriminated against.”
 
“We are at a distinct disadvantage due to the almost total lack of doctors capable of diagnosing and treating ME. Early diagnosis is a key to treatment; late diagnosis almost ensures that the person’s condition deteriorates.”]]><![CDATA[ME Facebook page]]> http://www.independent.com.mt/news.asp?newsitemid=106860

by Rebecca Sultana

A very kind Simone Manduca left a message on our website’s contact form suggesting we open a Facebook page for ME sufferers in Malta.

Two members of our support group, Rosanne Caruana and Nicola Reiss, have taken the initiative and recently set up a Facebook page for people with ME (Myalgic Encephalomyelitis), which should be a great extension to our website with regard to raising ME awareness in Malta and abroad, providing information on ME research and offering support to others who suffer from this dreadful disease, their families and friends. Since people with ME are often housebound and unable to go out and socialize, we hope this page will target the loneliness and sense of loss many have to endure.

The ME Sufferers Malta Facebook page is a ‘closed’ group – to avoid, as Nicky explains, “unscrupulous people who use these groups for advertising junk cures”; but we wish to welcome all to join.

We also wish to take this opportunity to congratulate Maria Blackburn on setting up the Multiple Sclerosis Malta Facebook group in the hope of raising more awareness on MS. We can easily empathise with her daily battle and the ordeal of living with a debilitating illness that is seriously unrecognised and misunderstood.

Rebecca Sultana
ME Sufferers Malta
www.mesufferersmalta.org

   
     
]]><![CDATA[When seeing is not believing]]>http://www.sundaycircle.com

by Rebecca Sultana

REBECCA SULTANA, from the ME Sufferers Malta group, describes what it’s like to endure an invisible illness…

“Although telling someone they look good is often seen as a compliment, it feels like an invalidation of the physical pain or seriousness of one’s illness and the suffering they cope with daily.”

No truer words have been spoken about ME (Myalgic Encephalomyletis – an illness of uncertain cause which leaves sufferers so fatigued they are often unable to live a normal life, or even get out of bed) than the above stated by Lisa Copen, founder of National Invisible Chronic Illness Awareness Week.

As a sufferer I know that when I am out and about people don’t realise that I am ill. But I am. And many other sufferers like me are dreadfully impaired, spending a lot of time house and bed bound. Therefore the ME Sufferers Malta group have joined in a campaign to increase awareness about the illness in the hope that people will understand what sufferers go through.

There are more than 64 ME symptoms. And although some are more common than others, each sufferer’s experience varies from another, and each day is different to the next. The severity of the symptoms also fluctuate and many sufferers report having a few 'good days' before being bedridden for a couple of weeks, or even months.

Those who painstakingly manage to go out on those ‘good days’, look healthy on the outside... but inside they are very ill. And, unlike the case of other recognised and accepted illnesses, ME sufferers are not admired for their efforts in coping, but often frowned upon and labelled self-indulgent malingerers.

31 yr old Mandy*, a moderate to severe sufferer who can’t hold down a job, describes what it’s like to live with ME during a good-to-average phase.

“The unpredictability of ME makes it hard for me to keep appointments and commit to attending social functions, and so I often cancel at the last minute. Planning ahead, however, is crucial, even if it is mentally draining and frustrating.

“If I want to go out for a drink on a Saturday evening with my husband, consistent bed rest, pacing and rationing energy all week is critical. My mum and husband have to both help with basic household chores like shopping, cooking and laundry so that I can rest.

“When Saturday finally arrives I might wake up and discover that I simply can not get out of bed, but if I can my day’s tasks must be kept to a bare minimum.

“Careful planning is always obligatory. Due to my gastrointestinal problems, a side effect of the illness, even eating small morsels of food results in severe bloating and discomfort. Therefore I can only eat a few hours before the designated departure time… but not too early otherwise my blood pressure will drop so drastically I will faint.

“Washing my hair is another draining ordeal which often leaves my arms and shoulders feeling badly battered, let alone shaving my legs and/or putting on make-up.”

Finding an appropriate place to have a drink is another vexing undertaking for an ME sufferer. Our over-sensitivity to light, and noise, necessitates the need for a quiet, tranquil and dimly lit venue… which means a ‘normal’ social life for the young sufferers in Paceville is out of the question.

“Sometimes being driven to the place is enough to deplete me from the remaining bit of energy. Parking is another problem. Plus, due to the fact that I cannot walk long distances because of the pain and fatigue, my husband and I often discover that after all the meticulous planning and the arduous effort to get ready, we have to drive back home.

“If we’re lucky, we’ll sit down to have our drink. I feel dizzy and try to ignore the soreness and physical exhaustion. I struggle even harder to fight the feeling of disorientation. Although I have a thumping headache and blurred vision, I attempt a conversation with my husband. If the irritating background stimuli gets too strong, brain fog sets in and words stop to make sense. I feel the desperate need to escape and the outing is cut short.

“When we finally arrive home, I spend half the night crying my eyes out for having to go through so much suffering, and the next half feeling guilty for ruining my husband’s life just by being in it.”
   
Undisturbed sleep is usually an unachievable goal for sufferers after a night like this, and it would usually take a couple of days to recuperate from what was meant to be an enjoyable night out. If the sufferer would have gone overboard, a relapse would faithfully follow, lasting days, weeks or even months.
Mild sufferers who juggle work and rest don’t have it easy either. Besides battling potential prejudice from employers and colleagues, mild ME sufferers often face disbelief from their family and friends who cannot understand how one moment they are doing fine and then suddenly they are not.

Suicide in ME is not uncommon. The two main reasons being the excruciating pain suffered by the sufferers, and the current climate of disbelief, rejection and inability to receive adequate support and services. ME sufferers are usually given a clean bill of health from their doctor because, as yet, there is no diagnostic test to prove that the sufferer is seriously ill. Therefore the medical board deems sufferers fit to work and refuses to accept their plea for benefits.

Accepting that you are ill for an undeterminable amount of time is already difficult enough, but being met with scepticism and scorn makes life truly unbearable. Moreover, unless ME is made visible through awareness, accepted and understood in all its complexity, there will be no hope whatsoever for a definitive and permanent cure for ME that will finally put an end to the unremitting torture that insatiably tests every ME sufferers’ sanity.

Click on: www.mesufferersmalta.org for more information.]]><![CDATA[Invisible illnesses]]>http://www.independent.com.mt

by Dr John H Greensmith

Reference is being made to the report AD calls for more awareness on ‘invisible illnesses’ (TMID, 10 September).

M.E. (Myalgic Encephalomyelitis) is one of the illnesses included among those for consideration during Invisible Illness Week (held between 8-14 September). An amazing 96 per cent of all illness is invisible and an equally incredible percentage of people with M.E. remain hidden, unaccounted for and unrepresented.

Some of the reasons for an illness being invisible are obvious. People, who are too ill to go out, or only on occasions when they feel a little better, remain behind closed doors and, ironically, may contribute to it by staying in to avoid disbelief, ridicule and prejudice from an ignorant population and, sometimes, doctors who prefer to say they must be malingering or attention-seeking rather than admit they do not understand it.

No one will know, for sure, how many people in Malta have M.E. but, if you follow the same principle as in the UK, it is likely that it is towards the lower end of our Department of Health’s estimate of between two and four people in 1,000, which, for Malta, would be about 800 people. The range is probably so large because it also includes all illnesses with chronic fatigue as a symptom and that doubles the number to 1,600. This larger total not only “hides” the number of M.E. sufferers within CFS (Chronic Fatigue Syndrome)/ME patients but distorts any conclusions from experiments in which they are used.

Now, if you only have one organisation for people with M.E. and only half of the sufferers joined it, you should expect at least 400 people. ME Sufferers Malta has far fewer than that. In the UK, we reckon that a single M.E. organisation ought to have at least 60,000 – 70,000, yet the biggest charity has only 7,500, or less than 10 per cent. It may be a similar proportion for Malta.

So, where are they? Where is the largest portion of people, perhaps by 9:1, with this illness? It’s unlikely that they don’t know there are organisations to represent them. They are well advertised, mentioned in articles about M.E., GPs know about them, so do many MPs.

It is so important to find these missing people for a number of reasons, not least to let them know they are not alone. We can’t know how many people are in any distinct group until we define its characteristics (blue eyes, Sagittarians, over six feet tall etc.) and exclude those, who do not fit (all other colour eyes, zodiac signs, under six feet tall etc.) The bigger the sample of people having the most pure definition, the better picture of what we are dealing with will emerge and the more likely we are to find a common physical cause which should, in turn, suggest effective treatment towards cure.

In the meantime, people with M.E. need advice about the best treatments available for symptoms such as pain, or to aid sleep and they need support with practical matters, including benefits and the opportunity to meet other people in the same boat. ME Free For All.org is among those saying that we should make this Invisible Illness Week the one when we take M.E. off the list of invisible illnesses because it no longer remains behind closed doors.

Visit ME Sufferers Malta at www.mesufferersmalta.org and join them online, today, or write to ME Sufferers Malta, P O. Box 25, Pieta PTA 1310, Malta.

Dr John H Greensmith
Bristol
United Kingdom]]><![CDATA[M.E Sufferers and their 'spoons']]> The Economic Update - September 2007 www.maltaeconomicupdate.com

When you are ill for a long period of time, you face a scary set of challenges and daunting decisions – the weightiest, regarding employment.  Living with a chronic illness depletes the sufferer from energy but also drastically limits his/her possibilities, writes Rebecca Sultana.

Through her Spoon Theory, Christine Miserandino (2003) cleverly explains, how a chronically sick person has a limited number of ‘spoons’ which s/he has to utilize prudently to get through the day. M.E (Myalgia Encephalomyelitis/Encephalopathy) sufferers are one prominent group of ‘spoon’ conservers.

What is M.E?
The chronic neurological disease is usually characterized by inexplicable physical and mental fatigue; however abnormalities in the central nervous system (brain and spinal cord) and the immune system give rise to an array of disturbing symptoms that vary widely in intensity.

M.E can develop slowly over time or crop up suddenly. However it happens, sufferers are left with a sense of loss of a life they once knew, with no diagnostic proof to back their ailments.

M.E can affect anyone, at any age. Although not contagious, evidence suggests it can be hereditary. Viral infections and stressful life events could trigger M.E; however, the root cause is still unknown, making it impossible to cure its sufferers.

Many attempt a combination of approaches and treatments to, even if temporarily, relieve individual symptoms and lead as normal a life as possible.

All M.E symptoms are made worse by physical or mental exertion often delayed reaction up to 72 hours later, making it hard to pinpoint what caused the relapse or plan ahead. Relapses can last days, weeks, months or years.

“Unfortunately ME is not an easy condition to diagnose.  Acceptance of the diagnosis is the first step to start managing the illness.”
Dr. Anthony Galea Debono

At its most severe, M.E can leave its sufferers bedridden, requiring 24hr care.  Disability rates of patients are similar to people with multiple sclerosis, lupus, rheumatoid arthritis, heart disease and other serious diseases.

Statistics abroad A major survey produced last year by Action for M.E, UK’s leading M.E charity, found that more than 250,000 people in the UK alone suffer from M.E, and 77 percent have lost their jobs because of the illness.

According to a recent report produced by Sheffield Hallam University’s Survey and Statistical Research Centre (2006), M.E is costing the UK’s economy £6.4 billion a year. Although the UK government recognizes M.E as a serious national health problem with an impact on the workforce, the Maltese government is oblivious to its disabling existence and its implications for the economy.

Call for well-informed medical practitioners
Can Malta afford the luxury of ignorance? While the island boasts of its advances in the field of medical professionalism, unfortunately there is an extreme lack of knowledge on M.E.

All members of the local ME sufferer’s support group voice unanimous concern regarding the fact that there are no M.E specialists who understand the severity of the condition and/or are up-to-date with the latest international research on M.E.  Indeed, most Maltese M.E sufferers (those who are aware they have M.E) got diagnosed abroad, and sadly, quite late during the course of their illness.

Jessica*, a severe M.E sufferer explains that in the initial phase of her illness, she was told that the symptoms were ‘all in my mind’, encouraged to be ‘more positive’ and advised to go back to work. After a 2 year struggle trying to manage a part-time job, her condition deteriorated drastically, forcing her to quit work. She is now practically house-bound and often bed-bound for many days after minor exertions. 

Early diagnosis is crucial
Hampshire MP, Sandra Gidley states that "Early identification of the illness is critical in aiding recovery and can prevent the condition from becoming more severe”. According to studies, the quicker a diagnosis is made, the less likely for M.E to become permanent.

Men and M.E
Unfortunately, a report released by Action for M.E, Men and M.E (2007), reveals that for various reasons, it is more difficult for men to get a timely diagnosis, if any at all. Also, most men find it hard to acknowledge they are ill and delay visiting doctors, putting their long-term health at risk.

Although previously perceived as a ‘woman’s illness’, the same report estimates that 80,000 men in Britain have M.E, while 16,000 sufferers are still undiagnosed.
These figures are very worrying especially in situations where men are the main breadwinners.

The Spoon Theory
‘Spoons’ are units of energy that are translated into tasks. Healthy people have an infinite number of ‘spoons’ a day. For M.E sufferers’ the number is restricted, depending on the degree of their illness. They have to meticulously count their ration of ‘spoons’, before planning their day; and use them wisely.

M.E ranges from mild to very severe. 25% of the 250,000 ME sufferers in the UK are severely effected and are robbed of the ability to work. However there is a much larger group of mild to moderate ME sufferers who have an adequate amount of ‘spoons’ to keep them on payroll.

Against all odds
Most sufferers were very hardworking and ambitious people before being struck down by their illness; and although holding a job while suffering from mild to moderate M.E is particularly difficult, sufferers are more than willing to sacrifice their meager number of ‘spoons’ to feel fulfilled and retain some form of dignity.

The unpredictable and fluctuating nature of M.E necessitates the preservation of ‘spoons’ to make up for the bad days or relapses that often follow good days, as a result of exceeding one’s limitations. Many fail miserably when faced with adversity from many angles.    

Educating employers
Educating employers ought to be at the top of the government’s agenda. With increased awareness, employers are more likely to empathize with M.E sufferers and remove as many obstacles to inclusion as possible.

Making reasonable adjustments such as providing special software like voice activated, speech recognition and text-to-speech applications, monitors producing less glare like LCDs (Liquid Crystal Display); making accommodations like changing work schedules/shifts, and redeployment to other posts; and arrangements for reduced or flexible hours, regular short breaks, time off during bad relapses or allowing teleworking would all reduce sufferers’ stress levels considerably, enabling their retention and more productivity.

After many years of battling severe M.E, Angele* is now only mildly affected by her illness. “Thanks to an understanding superior, I was able to pace my tasks in order to avoid relapses and this has played an important part in the improvement of my health. I was allowed to work from home on bad days and granted special leave”. Angele now holds a fulltime job.

Since M.E lowers the body’s defence system, sufferers are more vulnerable to illness, which sequentially leads to relapses. Therefore, adopting a zero-tolerance policy towards employees who show up for work sick is imperative.

Dave*, a moderate ME sufferer, juggles a part-time job and rest, missing out on his child’s upbringing; because weekends and time-off are spent restoring ‘spoons’.

“Some days I manage to work my 5hr shift, but there are days when my eyes cannot read the computer screen without feeling knackered, the overall background noise makes me nauseous while the bright light gives me migraine and fever. My overall weakness becomes so acute that even walking to the bathroom is a huge endeavour.”

M.E sufferers are more sensitive to normal stimuli, so reducing noise in the work environment, installing blinds, using low wattage bulbs and creating partitions in offices could work wonders in this regard.

Lillian*, a part-time teacher, describes her trauma. “Walking up and down the stairs to my classroom feeling dizzy and out of balance is dreadful, but the worst part is the humiliation of having to lean against the walls not to miss a step, at the age of 25.”

Due to blurred vision and disturbed ocular reflex, she is also unable to drive. She describes how walking to the closest bus stop can often leave her with half a day’s measly portion of ‘spoons’. Mobility needs are not just the result of tiredness but also of chronic musculoskeletal pain which is a typical feature of M.E.

Organizing workplace transport and installing lifts would make a substantial difference in similar scenarios.

Fear of discrimination
The majority of working M.E sufferers fear discrimination and choose not to inform their employer about their illness. 

Since his wife is a full-time mother to toddlers, Jason*, an M.E sufferer, worries excessively about job security. He relates the hardships of waking up feeling unrefreshed even after 8hrs sleep, with severe neck and back pain; and having to face demanding clients and deadlines, “looking hung-over”.

He admits that he often locks himself in the bathroom to rest, instead of going on break with his colleagues, to retain a precious ‘spoon’ or two.

Mariella*, a moderate to severe M.E sufferer, also prefers to keep her illness a secret. “Sometimes dragging myself out of bed, making breakfast and washing my teeth uses up all my energy leaving me with no option but to take the day off.”

On rare occasions, she also admits to passing out just before leaving her flat and never making it to work. All leave is retained for such emergencies.

Support from colleagues
Mandy* says that getting support from workmates gets her through the toughest parts of her illness. “Although I suffer from brain fog, have problems with short-term memory and processing information, my assistant can appreciate my situation and is very patient with me”.

However Sharon*, a nurse, shares her less positive experience. “Unless you have a terminal illness, a fracture or any other visible illness, you get no compassion.

Although my body is screaming in pain, I look well on the outside, so my colleagues assume I am being lazy. This adds to my stress and aggravates my symptoms. I never imagined this could happen, especially in the healthcare environment”.

Family carers
Sadly enough M.E doesn’t only affect the sufferer but drastically alters the whole family’s life.

Mothers resign from work and become fulltime carers; while two husbands give an account of how their wives’ illness and the need to assist and support them has resulted into limited educational opportunities, loss of business or a well-deserved promotion, plus an added strain on their relationship.

“Going home to more chores and having to attend to someone else’s needs besides my own is not easy and can be very wearing for one person to go through alone. I get no time to unwind and work awaits the following day.”

Malta’s Public Employment Agency
The Employment and Training Corporation (ETC) only assist those capable of and seeking fulltime employment, which the majority of M.E sufferers are unable to take up.

Although sufferers have a shortage of ‘spoons’, there are various home-working jobs like making phone sales, typing and translation jobs to mention a few, which sufferers can undertake depending on the degree of impairment.

“Disability rates of patients are similar to people with multiple sclerosis, lupus, rheumatoid arthritis, heart disease and other serious diseases”

The Welfare State and M.E
In spite of its devastatingly disabling effect, M.E, unlike in most countries, is not recognised as a disability in Malta.

Severe M.E sufferers (who have paid sufficient NI contributions during their working days) can apply for Invalidity Pension; however the majority (mild to moderate) of sufferers who can work a minimal amount of hours are not catered for by the welfare system.

If M.E sufferers were given disability status they could claim Disability Benefits and, unlike in the case of Invalidity Pension, can work for a few hours a week; they would qualify for disability services like Home Help and Care Service that would lessen the burden on family carers significantly.

People suffering from M.E would be automatically protected by Disability Discrimination Act legislation, which would obligate employers to make reasonable accommodation for M.E sufferers’ unique circumstances; necessitate the provision for individualised job matching by the ETC; and if adhered to, guarantee job protection.

Exploiting the potential of a ‘spoon’ fed economy ‘Spoons’ come in all sizes and varieties – big, small, some are shiny and polished, some have added character like a dent or a stain, some antiques or right out of the box; nevertheless, they all help sustain the labour market.

Not being able to attain and keep gainful employment due to lack of awareness and hindering circumstances, isolates and disempowers individuals affected by M.E.

Furthermore, loosing ‘spoons’ has serious long-term repercussions on the country’s never-satiated economy.

Sometimes it’s not what a person cannot do but what s/he is prevented from doing.

If all responsible parties collaborated, everybody’s ‘spoons’ would be exploited to their fullest, satisfying eager-to-work M.E sufferers and also preventing the waste of vital human resources.

Evidence shows that most M.E sufferers do gradually get better over time, especially if they learn how to pace their activity levels and not go over their baseline. In numerous cases, work has a positive effect on sufferers’ health and well-being; hence understanding the real effect of living with M.E is fundamental in aiding sufferers’ hang on to their jobs.

Everyone has limitations, but all and sundry are indispensable for a sound and thriving ‘spoon’ fed economy.

The local scene
There are no available statistics that show how many people in Malta suffer from M.E, however the small number (11) of members in the local M.E support group only goes to show how greatly under diagnosed M.E really is.

For more information on M.E, log on to www.mesufferersmalta.org or write to ME Sufferers Malta, P.O. BOX 25, Msida, MSD 1001.

*Sufferers’ names have been changed

FACT BOX
1.    International ME Awareness Day is 12th May.
2.    “Myalgic Encephalomyelitis (ME) is a debilitating acquired illness which has been defined by the World Health Organisation (WHO) since 1969 as an organic neurological disorder (code WHO-ICD-10-G93.3).”

HELPFUL TIPS
If you have been ill with similar ME symptoms for over 6 months, search for a knowledgeable doctor.

If you have been diagnosed with ME, it is imperative that you: -  
- Avoid overexertion -   
- Pace activity with bed rest
- Educate yourself (and those around you) about M.E         and seek appropriate support
- Eat a healthy diet
- Avoid and minimise stress
- Learn strategies to help with the cognitive symptoms        of ME.

WARNING
Things NOT to say to someone with a disabling chronic illness:
-    but you don’t look sick
-    everybody gets tired
-    it must be nice not having to go to work
-    I wish I had time to take a nap
-    if you’d get out more
-    you’re just getting older
-    it can’t be that bad
-    it’s all in your head
-    you’re just depressed
-    there are people worse off than you
-    you’ll just have to tough it out
-    you just need a more positive attitude
-    this, too, shall pass

I wouldn’t wish what I have on anyone, but unless you get it you just don’t get it
Source: www.chronic-illness.org]]><![CDATA[Ta' 17-il sena... dejjem ghajjiena]]>
L-Orrizont - www.l-orizzont.com

F’kamra ta’ tfajla f’dar f’Wied il-Ghajn jigbdulek l-attenzjoni l-bosta trofej li t-tfajla rebhet bhala atleta. Imbaghad harstek taqa’ fuq siggu tar-roti, li jixhed grajja ta’ holm imfarrak u hajja maqluba ta’ taht fuq. Din hi l-grajja ta’ Denise Vella, li kelli x-xorti li niltaqa’ maghha ftit jiem ilu.

Wara ghoxrin sena fil-gurnalizmu, ftit huma l-istejjer li ghadhom jixxokkjawni jew jimpressjonawni. Izda lil Denise bqajt nahseb fiha ghal hin twil wara li nfridna. Ma’ l-ewwel daqqa ta’ ghajn hsibtha mudella – twila u rqiqa, b’par ghajnejn lewn sema safi u xahar twil isfar jghatti nofs daharha. Imbaghad ghidtilha biex nitilghu zewg indani tarag halli nintervistaha fil-kwiet, u wegbitni li ma kellhiex sahha titla’ fuq.

Kont naf li se nintervista tfajla li tbati b’kundizzjoni maghrufa bhala ME, izda ma bsartx li din il-kundizzjoni tista’ tkiddek daqshekk. Fil-fatt sa ftit jiem ilu jien kont wahda mill-eluf ta’ Maltin li lanqas biss jafu x’inhi ME. Illum qed nikteb dan l-artiklu bit-tama li aktar nies mhux biss isiru konxji ta’ l-ME izda wkoll jibdew jifhmu u jaghdru lil dawk li jbatu biha.

Sakemm Denise kellha 13-il sena, kollox kien miexi harir f’hajjitha. Kienet brava hafna fl-iskola u kienet ukoll atleta li tiprometti mhux ftit fil-Junior Elite Athletic Scheme tal-Malta Amateur Athletic Association. It-tahrig kienet tiehdu bis-serjetà u dan jixhduh l-unuri li rebhet. Kienet tifla ferrieha li thobb tkun fil-kumpanija tal-hbieb.

F’Dicembru tal-2004 Denise marret picnic mal-hbieb izda xejn ma hadet gost ghax bdiet thoss ugigh fl-istonku u tirremetti. Lura d-dar, qattghet erbat ijiem fis-sodda sakemm hassitha ahjar. Malli stejqret regghet bdiet tmur ghat-tahrig ta’ l-atletika izda mill-ewwel deher li ma kinitx fil-forma tas-soltu. Bdiet tmur hazin fit-tlielaq, thossha ghajjiena u saqajha jugghuha.

It-tabib li kienet tmur ghandu b’konnessjoni ma’ l-isport taha parir biex tieqaf ghal xahar shih mill-atletika. Gara, izda, li minkejja dan il-mistrieh, Denise baqghet thossha ghajjiena u bla sahha u kultant kienet tbati bid-dijarrea wkoll. Meta nghid “ghajjiena” u “bla sahha” rrid infisser dan fil-veru sens tal-kelma. Denise qaltli li gieli kienet tkun miexja fit-triq u tpoggi bil-qieghda fuq il-bankina ghax thoss li ma tiflahx taghmel pass iehor. Biex taqsam it-triq kienet tkaxkar saqajha, bis-sewwieqa jpaqpulha ghax quddiemhom jaraw tfajla u mhux anzjana. Waqt il-quddies la kienet tiflah toqghod gharkobbtejha u lanqas bil-wieqfa.

Meta ra hekk, it-tabib ta’ l-isport iddikjara li Denise ma kinitx ta’ idejh u ssuggerixxa li l-genituri taghha jehduha ghand specjalista tat-tfal. “Domna xhur shah intabbu,” qaltli Sylvana, omm Denise. “L-ispecjalista ghamlilha diversi testijiet ghal mard differenti u kollha taw rizultat negattiv. Jiena kont smajt bl-ME u ghidt lill-ispecjalista li kelli suspett li Denise kienet qed tbati b’din il-kundizzjoni. Fl-ahhar ta’ Settembru tal-2005 is-suspetti tieghi gew ikkonfermati.”

Ghall-ewwel Denise ma riditx taccetta l-kundizzjoni taghha. Il-genituri taghha kienu jaghmlu hafna ricerka dwar l-ME izda Denise ma riditx tkun taf x’saru jafu. Sadanittant Denise bdiet tattendi r-raba’ sena ta’ l-iskola sekondarja. Kienet issibha difficli hafna biex tikkoncentra imma xorta wahda rnexxielha tmur tajjeb fl-ezamijiet ta’ nofs is-sena. “Malli nasal mill-iskola kont norqod ghal diversi sighat,” qaltli Denise. “Imma meta tkun tbati bl-ME l-irqad ma jtaffix l-ghejja. Wara li torqod, tqum l-istess jew aghar. Thossok dejjem qisek qlajt daqqa ta’ trakk, qisek imwahhla mas-sodda u ma tistax tqum.”

Wara l-ezamijiet ta’ nofs is-sena, sahhet Denise kompliet tmur lura, tant li kultant kien ikollha tuza siggu tar-roti. Bdiet ukoll thoss sintomi godda, bhal ugigh fil-gogi u l-muskoli u attakki ta’ emikranja, filwaqt li bdew idejquha certi rwejjah, l-istorbju u d-dawl. Darba wahda ma bdietx tara sewwa (dik li tissejjah tunnel vision) u l-kliem ma bdietx tippronunzjah sewwa. Qabadha paniku kbir u l-genituri taghha telqu jigru biha lejn l-isptar. Wara saru jafu li dawn ukoll kienu sintomi komuni ta’ l-ME.

Is-sintomi godda li bdiet thoss Denise giegheluha taccetta l-kundizzjoni taghha u tibdel l-istil ta’ hajjitha biex thalli lil gisimha jistrieh kemm jista’. Matul l-ahhar sena ta’ l-iskola sekondarja, bil-koperazzjoni shiha tal-ghalliema taghha, Denise kienet tattendi ghal ftit lezzjonijiet kuljum, imbaghad tmur lura d-dar.

Il-genituri taghha xtaquha tipposponi l-ezamijiet ta’ l-“O” Levels izda Denise kienet determinata li minkejja kollox, taghmel l-ezamijiet fl-istess sena ta’ shabha. Fil-fatt Denise ghamlet disa’ ezamijiet f’salt u ghaddiet minnhom kollha b’marki gholjin hafna. Hawn ta’ min jghid li l-Bord tal-Matsec fehem is-sitwazzjoni ta’ Denise u taha l-ghajnuna kollha li kellha bzonn.

Ma ghandniex xi nghidu, b’dawn l-ezamijiet Denise hadet kedda kbira li qattghet sajf shih tpatti ghaliha. F’Settembru li ghadda bdiet tattendi s-Sixth Form tal-Kullegg De La Salle, fejn ukoll sabet koperazzjoni kbira mill-kap ta’ l-iskola, mill-ghalliema u minn shabha. Fil-kullegg sahansitra gie nstallat lift biex jigi evitat li Denise titla’ t-tarag u ma tkunx tiflah taghmel il-lezzjonijiet.

Fis-Sixth Form Denise qed tistudja l-Kimika, il-Biologija, il-Fizika, il-Filosofija u l-Ingliz. Il-homework ma tiflahx taghmlu izda ghall-inqas tattendi ghal-lezzjonijiet. Fil-weekends rari tohrog mid-dar, biex tikkonserva l-energija taghha ghal matul il-gimgha, u hbiebha ma jmorrux id-dar taghha ghax jghejjuha.

Bhala l-progett taghha ghas-suggett tas-Systems of Knowledge, Denise iddecidiet li taghmel kampanja biex tohloq kuxjenza fost il-pubbliku Malti dwar l-ME ghax thoss li din il-kundizzjoni mhix maghrufa bizzejjed. Wara li l-ghalliema taghha accettaw, hija bdiet tahdem fuq il-kampanja taghha, fejn qed tqassam posters u fuljetti b’taghrif dwar l-ME fi skejjel, klinici u sptarijiet. Bl-ghajnuna tal-fotografu Brian Grech, Denise irnexxielha tipproduci fuljetti tassew sbieh u effettivi, bis-slogan “I suffer from your inability to see my disability”. Ta’ min jghid ukoll li Mejju hu x-xahar iddedikat lill-holqien ta’ kuxjenza dwar l-ME filwaqt li t-12 ta’ Mejju huwa l-Jum Internazzjonali ta’ l-ME.

Denise taf li ghall-kundizzjoni taghha ma hemmx fejqan, ghall-inqas sa issa, izda taf ukoll li hawn hafna nies li jfiequ mill-ME bl-istess mod inspjegabbli li bdew ibatu minnha. Il-holma taghha tibqa’ dik li tistudja l-medicina u tiggradwa bhala tabiba. “Jien ma naqta’ qalbi qatt,” qaltli Denise. “Nibqa’ bit-tama li din il-kundizzjoni ghad nohrog minnha u nkun nista’ nghin lil dawk li jbatu biha.”

Minn fommok ‘l Alla, Denise. Se nitlob kuljum biex meta xi darba nergghu niltaqghu narak mimlija energija, tigri f’tellieqa b’xaghrek itir kif tidher f’dak ir-ritratt ta’ zminijiet isbah.

Imma din l-ME x’inhi?

L-ittri ME jirreferu fil-qosor ghall-kundizzjoni maghrufa bhala Myalgic Encephalomyelitis jew Chronic Fatigue Syndrome. Fir-Renju Unit biss hemm mill-inqas 250,000 ruh li jbatu biha – hafna minnhom tfal.

Fil-prezent ma jezisti l-ebda test mediku li jaghmel dijanjosi specifika ta’ l-ME. Fil-fatt id-dijanjosi hafna drabi ssir billi, permezz ta’ testijiet ohra, tigi eliminata l-possibiltà tal-prezenza ta’ mard iehor. Sfortunatament spiss jigri li persuna tkun ilha tbati minn diversi sintomi ghal mill-inqas sitt xhur qabel ma l-ME tigi biss ikkunsidrata. Dan xejn ma jghin lill-pazjent ghax il-mistrieh huwa krucjali fil-fazi bikrija tal-kundizzjoni u billi l-pazjent ikun ghadu ma jafx minn xiex qieghed ibati, ma jistriehx bizzejjed.

Huwa importanti hafna li dawk li jbatu bl-ME jisimghu dak li jkun qed jghidilhom gisimhom u jaghtuh il-mistrieh li jkollu bzonn. L-ME mhix xi forma ta’ dipressjoni hafifa li tisparixxi b’attitudni pozittiva lejn il-hajja. Jekk tinjoraha ma tkunx qed tghin lilek innifsek.

Sal-lum ghad ma hawnx kura ghall-ME, u sakemm tinstab il-kawza ezatta ta’ din il-kundizzjoni ma hemmx possibiltà kbira li tinstab il-kura. Madankollu jezistu xi medicini li jistghu jtaffu ftit is-sintomi ta’ l-ME. Il-medicini ma jahdmux bl-istess mod fuq kulhadd u ghalhekk kull individwu jrid isib dak li hu l-izjed effettiv ghalih.

L-ewwel sintomi ta’ l-ME spiss ikunu simili ghal dawk ta’ l-influwenza, bid-differenza li dawn ma jmorrux, anzi hafna drabi jsiru aghar. Hafna drabi l-pazjenti jkollhom ukoll ghejja kbira inspjegabbli li ma tittaffiex bl-irqad jew bil-mistrieh. Sintomi ohra jinkludu ugigh fil-muskoli, in-nervituri u l-gogi; nuqqas ta’ rqad; nefha fil-glandoli; attakki ta’ emikranja; deni baxx; sensittività ghal dawl qawwi, hsejjes u rwejjah; intolleranza ghal certu ikel; dardir u indigestjoni; dijarrea jew kostipazzjoni; nuqqas ta’ koncentrazzjoni u nuqqas ta’ memorja ricenti; sturdament u diffikultà biex wiehed jara car; u diffikultà biex wiehed isib il-bilanc.

Is-sintomi jistghu jinbidlu matul iz-zmien u mhux in-nies kollha li jbatu bl-ME jkollhom is-sintomi kollha. Barra minn hekk l-ME ta’ persuna tista’ tkun pjuttost hafifa filwaqt li dik ta’ persuna ohra tista’ tkun qawwija hafna. Fil-fatt xi whud jirnexxilhom jibqghu jmorru ghax-xoghol filwaqt li ohrajn ma jkunux kapaci jqumu mis-sodda u jkollhom bzonn min jiehu hsiebhom il-hin kollu.

Hafna minn dawk li jbatu bl-ME maz-zmien ihossuhom ahjar, ghalkemm mhux tajjeb daqs kemm kienu qabel ma mardu. Hu stmat li bejn 6 u 12% ta’ dawk li jbatu bl-ME fir-Renju Unit jiehdu sahhithom lura fi zmien sentejn izda madwar 60% qatt ma jergghu lura ghal-livell ta’ sahha li kellhom qabel u sa 20% jibqghu jsofru minn dizabilità permanenti minhabba l-ME. Dijanjosi bikrija tghin biex dak li jkun jaqleb ghall-ahjar aktar malajr.

• Ghal aktar taghrif jew ghajnuna tistghu tiktbu lill-ghaqda ME Sufferers Malta, PO Box 25, Pietà PTA 1310 jew izzuru s-sit www.mesufferers malta.org.]]><![CDATA[System Failure]]>The Times of Malta - www.timesofmalta.com

by Suzanne Garzia
Weekender, The Times of Malta

Myalgic Encephalomyelitis (ME) is not a trivial ailment but an extremely serious chronic illness, and those affected by it certainly do not deserve contempt or scepticism about their condition.

'ME is considered a disability in various countries, and sufferers are catered for by the welfare system. However, Maltese ME patients lack any government financial support or disability benefits...'

We are all prone to the occasional bout of illness that plays havoc with our everyday activities. A long spell of malaise can leave its victims decidedly grouchy and listless. Many times mild depression sets in, and this is only overcome after one desperately clutches at the prospect of a healthy future. However, sometimes this option is not available to an ailing few.

This is particularly true for sufferers of Myalgic Encephalomyelitis (ME). Unfortunately, the sickness impact profile (SIP) of this incapacitating disorder is so extreme that it is only exceeded by terminally ill cancer and stroke patients. There is an urgent need for social awareness about ME. This is highlighted during this month (ME awareness month), with an emphasis on May 12 (ME Awareness Day).

ME is a severe chronic and disabling condition. Since 1969 it has been classified as a neurological disorder by The World Health Organisation (WHO). Despite a vast medical history of similar cases dating back to the late 19th century, ME was vastly stereotyped as "yuppie flu" in the early 1980s, and controversy regarding its clinical status still exists today.

ME is also known as Chronic Fatigue Syndrome (CFS), a degrading terminology that was undoubtedly promoted by a bunch of insensitive individuals who clearly have no idea what this illness entails. The term CFS suggests that ME is a disorder ruled by persistent fatigue. This encourages public confusion. No wonder few understand the serious implications of the syndrome, and sufferers have been advised throughout decades to pull their socks up and to stop slouching about!

However, the main debilitating symptom of ME is not fatigue (although this is also a symptom), but rather the cognitive dysfunction. In fact, most ME patients suffer a loss in verbal and performance intelligence quotient (IQ). Dr Paul Cheney, one of the world's most recognised names in CFS treatment and research, found that on a biochemical level, many ME patients had some derangement of the brain which was higher than that found in patients with Parkinson's and Alzheimer's disease.

The horrifying fact about ME is that it can afflict anyone at any stage of their life, and cannot be fobbed off by a healthy lifestyle or a positive attitude. ME currently affects over one million worldwide, and 250,000 individuals in the UK. Some of the sufferers are mere children (as young as five). Research data indicates that more females than males develop ME, however the reason remains largely unknown. This condition is potentially life-threatening and has a 10 per cent death toll from end-organ damage (mainly from cardiac or pancreatic failure).

ME is believed to be triggered by a viral infection, physical injury or trauma, vaccinations and environmental toxins. The evidence that traumatic events such as bereavement can lead to ME is relatively weak. Regrettably, full remission from ME only takes place in about four per cent of patients. The majority fluctuate between good health periods and relapses, a minority remain severely affected and a few show continued deterioration. The latter often end up in wheelchairs or bedridden, and are unable to take care of themselves.

Warning signs of ME are bafflingly complex, and trick many sufferers into believing that they are going slowly mad. ME is characterised by post-encephalitic damage to the brain stem leading to central system dysfunction. Consequently, there is a breakdown in bodily homoeostasis. There are more than 64 symptoms of ME (see table). The tragedy of ME is that the inexperienced observer might view its symptoms as random and unrelated, and conclude that it is some sort of syndrome that can affect any stressed out individual during their life. This is one of the reasons why some ME sufferers are simply not taken seriously. Few realise that a diagnosis of ME is based on the evolution of the different dysfunctions, long duration periods (over a period of six months), degenerative effects on body functions and relapses. Those willing to believe the lobby of psychiatrists who shamelessly maintain that ME is a psychiatric disorder, should know that over 4,000 papers of biochemical research prove this condition's organic basis. This supports the view that it is a physical illness. While a definitive laboratory test for ME does not exist, a specific series of tests including a Magnetic Resonance Imaging (MRI) brain scan can in some cases enable a diagnosis of ME.

Maria *, a 31-year-old Maltese woman housebound with severe ME, is only too eager to share her frustration at the misconceptions surrounding her condition. She highlights the general lack of awareness and public insensitivity. ME is considered a disability in various countries, and sufferers are catered for by the welfare system. However, Maltese ME patients lack any government financial support or disability benefits, and moreover face a general lack of awareness and an "I do not care" attitude. ME Sufferers Malta - a non-profit private organisation founded by

ME sufferer Rebecca Sultana earlier this year, also promotes the importance of educating the public and school personnel about ME. In fact, suicide in younger patients and in the early stages of the illness is not uncommon, and is mostly due to disbelieving social attitudes, lack of welfare support and loss of educational or employment opportunities.

An ME sufferer in Peggy Munson's book Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome testifies the stigmatising attitudes towards this condition through a personal perspective: "...many people did simply assume the worst, approaching me with suspicion, refusing to utter the name of my diagnosis, and experiencing shame, along with me, for standing up for my rights in public."

Maria has been at the receiving end of such treatment. She claims: "ME sufferers may look and sound relatively healthy. Most do their utmost to hide their illness, so that they do not appear weak, and to avoid prejudiced attitudes, negative comments and compassionate stares. Therefore, people tend to assume that they are exaggerating or simply lying. When my ME was still not severe, I was once discriminated against by a potential employer who clearly had this view in mind."

Maria, who is a member of ME Sufferers Malta, had been suffering from moderate ME following a viral infection for a number of months. However, last year things took a turn for the worse after she contracted cytomegalovirus (CMV). This left her so exhausted that even speaking became a Herculean task, and a leisurely stroll was soon presided by persistent pins and needles and extreme muscle fatigue. She gradually lost contact with most of her friends and had to quit her professional career. Maria claims: "Only my spirituality drives me onwards, as sometimes the loneliness and sense of defeat is tremendous". Nevertheless, her deep determination also gives her a purpose in life. She is currently struggling to complete a correspondence course in journalism, and attempts to pursue her favourite leisure activity - singing, by attending weekly lessons.

The prognosis for ME is rather bleak. Currently, a cure for this condition simply does not exist. However, Action for ME UK claims there are a number of approaches that can help. Patients who are given the advice to rest during the early stages of the illness have a higher recovery rate than those who stubbornly insist on exerting themselves. Some sufferers like Maria find nutritional supplements helpful, while dietary changes may reduce gastrointestinal problems. Sometimes low hormone levels are treated by hormonal replacement therapies, and medication may be required to stop the muscles around the heart from going into spasm.

The key to dealing with ME is primarily pacing (learning to manage your activity and energy levels). During a relapse, brushing one's unruly tresses, or having a much needed shower can be a tiring experience. A few minutes of such exertion can prompt an ME sufferer to crawl to the nearest couch in agony. Consequently, planned tasks for the day will be ruined. Therefore it is essential for an ME patient to recognise his/her limitations and learn how to be in control of his/her body. Graded physical activity can also help. However, ME sufferers should never be forced to exercise beyond their physical capabilities since this can lead to drastic health problems and even sudden death. Cognitive behavioural therapy may also aid patients to get to terms with their condition. Other approaches include holistic medication such as reflexology, acupuncture and herbal medicine.

In our hectic lifestyle, few have an ounce of empathy for individuals that shy away from social activities with feeble complaints about illness. However, ME is not a trivial ailment but an extremely serious chronic illness, and those affected by it certainly do not deserve contempt or scepticism about their condition. An attempt to describe the devastating effects of ME was made at a 1995 congressional briefing by Mark Loveless, head of the AIDS and CFS clinic at Oregon Health Sciences University. He claimed that an ME patient, "feels effectively the same every day as an AIDS patient feels two weeks before death". The only difference is that the symptoms can go on for never-ending decades... until ultimately one's body simply gives up the struggle to survive.

* Name has been changed to protect the person's identity


What are the symptoms?

• Gastrointestinal problems such as diarrhoea or constipation, abdominal pains, nausea, difficulty swallowing and oesophageal reflux (heartburn)
• Visual and neurological disturbances such as photophobia, blurred vision and dizziness
• Hearing and speech dysfunctions including hyperacuity (intolerance to normal sound volume), tinnitus and a slow speech rate
• Sleep disorders such as fragmented sleep patterns
• Cognitive dysfunction
• Cardiac disturbances such as resting tachycardia and cardiac arrhythmia
• Low grade fever and poor temperature control
• Circulatory problems
• Immune system dysfunctions including lymphadenopathy (chronically swollen lymph nodes)
• Persistent fatigue
• Pain such as muscular pains (myalgia), joint pains, and migraines
• Emotional instability such as mood swings and anxiety (triggered by aggravated physical symptoms)

Many other ME symptoms exist. ME patients suffer a combination of diverse symptoms.

The local scenario

There is no current data regarding the number of ME sufferers in Malta. However, there is a general lack of awareness about this condition and its severe implications.

Ongoing scientific research abroad ensures that more health consultants are able to recognise the underlying symptoms of ME, and provide a clinical diagnosis.

Anthony Galea Debono, one of Malta's leading neurologists comments: "At the beginning of my career there was little knowledge about ME. I used to assume that certain symptoms of this condition were simply the onset of clinical depression. However, during my vast career I became increasingly aware of the existence of ME as a medical disorder due to the coherent list of symptoms manifested by some of my patients. Nowadays, I do not doubt the authenticity of this illness, and do my utmost to help sufferers."

Anyone suspecting that they are afflicted by ME should seek medical advice immediately.

• Support and information my be obtained from ME Sufferers Malta by writing to ME Sufferers Malta, PO Box 25, Msida MSD 1001, by e-mailing friend@mesufferersmalta.or, or online at http://www.mesufferersmalta.org

]]><![CDATA[Understanding and treatment of ME sufferers]]>
www.timesofmalta.com

What I find strange about Rebecca Sultana's (ME Sufferers Malta) contribution on Bassant Puri's work (May 30) and his claims that VegEPA is essential to recover from ME, is the fact that the feature in The Times Weekender (to which, I presume, Ms Sultana's organisation had contributed input) contained no mention of Prof. Puri or VegEPA. I responded to the Weekender feature to correct this most important omission.

Her contribution now seems mainly aimed at instilling doubts. Before Prof. Puri made these claims of a breakthrough in the understanding and treatment of ME, sufferers and their families had no hope. Now Prof. Puri claims that over 80 per cent of his patients improve within three months of taking the ultra-pure VegEPA supplement, no matter how long they have suffered from it. He recommends a dose of eight capsules daily, and a maintenance dose of half that after recovery occurs, usually within three months. In my view, the best thing sufferers can do to help themselves is get Prof. Puri's book entitled Chronic Fatigue Syndrome - A Natural Way To Treat ME, from the publishers ( www.hammersmithpress.co.uk ) or from the manufacturers of VegEPA ( www.igennus.com ).

Prof. Puri has been criticised for recommending only one product, but he explains that he knows of only one product (VegEPA) which has the required ultra-pure EPA (without DHA - so generic fish oils don't work in his opinion) required by ME (and mood disorder) sufferers. Ms Sultana quotes Prof. Puri's point that ME sufferers who do not have an essential fatty acids (EFAs) blood deficiency, won't respond to VegEPA, and that they should therefore keep this in mind considering the not so cheap supplement being recommended.

This seems to me another bit of doubt-instilling advice. Having your blood tested for EFAs deficiency (only done in very specialised overseas labs) would almost certainly cost more than the first three-month supply of VegEPA, by which time a sufferer would know whether he/she is one of the over 80 per cent of lucky ones that Prof. Puri claims respond favourably to this supplement. Get his book, because it contains more advice besides VegEPA.

Albert Cilia-Vincenti,
Attard]]><![CDATA[No support and no social benefits]]>www.it-torca.com

by Victor Vella

(translated from Maltese)

"I suffer from your inability to see my disability."
 
"I bought this dress for my son's wedding. If only I had the chance to be there."

"ME took away my job, my social life. I am claiming them back slowly. If only I didn't have to be so careful not to lose them once again."

"Some mornings, the choice is between combing my hair and having breakfast. If only I had the energy to do both."
 
These are some awful experiences described to me by patients suffering from ME (Myalgic Encephalopathy) whom I met by chance. The British ME Association estimates that there are 250 000 persons suffering from ME and CGS (Chronic Fatigue Syndrome) in the United Kingdom.
 
In Malta, life for people suffering from ME is not easy at all due to a number of factors including lack of social benefits and lack of information and support.
 
According to the American Centre for Disease Control and Prevention (CDC), for patients to be certified as suffering from this condition they must experience severe chronic fatigue for six months or more and the condition must not be attributable to other medical reasons. At the same time they could experience four or more of the following symptoms: difficulty in concentrating and memory gaps, sore throat, swollen glands, muscle pain, joint pain without any swelling or redness, headaches, sleeping disorders and physical and mental exhaustion without much exertion. In total, 64 symptoms have been associated with ME, including a continuous slight fever, stomach problems and even convulsions. In cases where someone suffers from severe acute ME for several years, there could also be further complications.
 
ME is a neurological disorder. Since 1969 it has been recognised by the World Health Organisation as a "distinct organic disorder" under code G.93.3.

 
Nicola's story
 
Nicola describes how the first symptoms of ME she felt were lack of concentration, light-headedness, oversensitivity to noise, dizziness and exhaustion. She recounts how on some days she wouldn't be able to leave the sofa and on a good day she wouldn't be able to walk for longer than fifteen or twenty minutes, whereas before she had used to walk for hours on end. Nicola says she has no social life and she doesn't watch television.


ME sufferers in Malta
 
In spite of all this hardship, until now ME sufferers in Malta still face closed doors whenever they seek help. This newspaper spoke to the Maltese Association of ME Sufferers. We asked whether there are any statistics about the number of patients suffering from this condition in Malta. We were told no such statistics exist, but Dr John Greensmith from the UK organisation ME Free For All attempted a calculation through foreign statistics. He concluded that there are eight hundred ME sufferers in Malta, including some children. Some of these are not medically certified as suffering from ME, while others will actually be certified as suffering from some other condition.
 
We asked how much help people suffering from ME get. The Association replied that ME sufferers hardly get any help. They said that many doctors do not have enough knowledge about this disease and thus do not feel competent to declare that a patient is suffering from it. In fact, most of the patients would not be diagnosed with ME until the disease is already at an advanced stage and therefore the chances of recovering would be remote. According to the Association, many patients had to pay to go abroad and find out what was causing their symptoms. One person was recently diagnosed with ME after having lived with the condition for seventeen years.  Without treatment during the initial stages, the condition deteriorates.

 
Karen's story

Karen's family doctor never officially diagnosed her as suffering from ME. But he mailed her an article about the disease taken from a magazine. This was an indication that he thought this was the condition she was suffering from, yet he was not in a position to formally say so. He also referred her to a young doctor who had just returned from the UK where he was training and working with ME sufferers. This doctor appreciated what she was going through...
 
Lack of trust in patients’ descriptions of their symptoms is a common feature in research about ME. This is one of the hurdles sufferers encounter. Similarly, in other countries, many doctors think patients overstate their symptoms. Many patients recount how medical personnel would tell them that their symptoms were not due to a disease or real condition but to imagination or obsession.
 
Members of the Maltese Association told us that this attitude led many ME patients to get so sick that they could not leave their home or even get out of bed. They said that even those 'lucky enough' to be certified as suffering from ME are often left to suffer on their own as their symptoms get more acute.

 
What about help?
 
We asked what kind of help is offered by the state or NGOs to people suffering from ME. We were told that ME is not currently included in the list of conditions under Maltese Social Security Law, despite being considered a disability in other countries.

Regardless of the pressure applied by the Association, their pleas have been ignored and the only reply they have received was from the Director General saying that he will gather more information about the disease for future policies.

Another point raised was whether a person suffering from ME qualifies for an invalidity pension if he or she cannot work. Very few people in Malta qualify for this pension. The association told us that this was problematic since members of the invalidity pension board, who are doctors, know very little about ME. In fact, many sufferers have had to appear before the board twice or three times before being given the pension. They are all anxious about the next time they have to appear before the board, three years after they are given the pension.
 
"Not everyone is entitled to a pension", they told us. "There are a few patients who never had a job because they developed the disease when they were young and therefore never paid any contributions. In our support group there are young people who have never worked due to the severity of the disease. Their parents are constantly worried about what will happen to their child when they die or when they will no longer be able to support them financially."
 
"Money isn't everything... and this applies also in this case. Many ME sufferers depend on their neighbours to buy food and have their clothes washed. For many diseases and conditions the limitations are obvious" according to the association.
 
But what is the greatest challenge for persons suffering from ME? Unfortunately the reply we got from the association was that the greatest challenge is facing the doctors, convincing them to take you seriously and guide you on how to treat the disease. We also asked what kind of support relatives and colleagues can offer to people suffering from ME. They said that since there is no cure, the best that one can do is to empathize and offer mental support. If the condition is severe the patient would need help at home such as cooking, cleaning and shopping. It is a pity that a lot of sufferers have to face scepticism from their family. This brings with it a lot of emotional pain which makes the condition worse. Foreign statistics show that suicide rates among ME sufferers are high and linked with the amount of support and services they get.

 
Faye’s story
 
“After several years suffering from this disease, doctors told me the reason why I was lacking any energy was due to a depression and they prescribed me anti-depressants. After six weeks it was becoming difficult for me to express how terrible I was feeling. I didn’t want to live this way…”. Faye and many others suffering from ME have gone through similar experiences when consulting doctors about their condition.

Most doctors, lacking sufficient knowledge or being too cynical about ME, attribute fatigue to some form of depression and easily prescribe anti-depressants instead of trying to help their ailing patients. Although there is no specific cure for ME, doctors could help by alleviating some of the particular physical symptoms, such as continuous pain, stomach problems, migraine and others. Some take anti-depressants simply because after several years of misery and hardship without any hope of finding cure or support, they feel too distressed and worthless.
 
“Some of the doctors go as far as reproaching us for failing to take anti-depressants. They say we are not willing to help ourselves. But depression is the result of the disease, not the disease itself”.

 
Difficulties at the workplace
 
Difficulties also arise at the workplace. Fearing for their jobs, most ME patients do not disclose the fact that they suffer from the disease. According to the Maltese Association, persons with non-acute ME are bullied by their superiors and colleagues as they work at a slower pace due to their condition. Furthermore, quite a few sufferers are simply not able to work.
 
In certain cases free medicine is provided by the state to people suffering from chronic conditions. We asked the Association whether this is the case for ME. There is no specific cure for ME - in truth, there is no cure at all. Yet doctors may prescribe medicine to alleviate pain or to induce sleep, none of which is provided by the state.


Grace
 
"I have no option but to take all my leave to get some sleep. Like this I can keep my job and live on my own in peace. No one wants to be with me as I spend all the time in bed, exhausted and drained."
 

Information provided by the EU
 
The European Commission’s Directorate General for Health and Consumer Protection is aware of the problems related to ME. According to the European Commission, the national governments are responsible for health issues. The EU's role is to take measures that complement member states' policies. Since ME is considered a rare disease, the best suited EU programmes are those designed for research. The Commission insists that due to insufficient research, diagnosis and treatment, ME patients could lose out on much needed resources and services. The European Commission's Directorate General provides relevant information on its website.
 
 
The Maltese Support Group
 
A support group has been set up in Malta to assist persons suffering from ME. You can contact the group at the following address:
 
M.E. Sufferers Malta
P.O. Box 25
Pietà, PTA 1310
 
Email: info@mesufferersmalta.org
Website: http://www.mesufferersmalta.org]]><![CDATA[Government should help ME Sufferers]]>
The maltastar.com is the first newspaper, certainly on Malta, possibly in the World, to headline the disgraceful scandal of ME sufferers left, chronically ill for years, with no state benefits at all.

(Click here - www.maltastar.com/pages/ms09dart.asp?a=1865 -
to read maltastar.com's report 800 Maltese Myalgic Encephalomyelitis with no social benefits, 16 May 2009)

It is not only shocking to read about in a civilised society, like Malta, renowned for its caring, generous, warm hearted ways but downright unjust and probably discriminatory in a way which, if not rectified by Government, should be challenged in the European Courts of Justice.

Firstly, there is no good reason why M.E. (Myalgic Encephalomyelitis) should not be included as a recognised condition by the Maltese Social Security System, since it is recognised by the World Health Organisation as a neurological condition. It is not a psychiatric illness, attention-seeking, laziness or just a bit of tiredness.

Secondly, benefits should not be seen - as they sometimes are here in the UK - as a "handout". They are, in fact, a hand back for what was handed over, when people were able to work and contribute to the pot, for times when they are unable because of illness and need assistance from their fellow citizens and taxpayers.

It would be a shame if it had to be a legal or political issue, to enforce, rather than one of common human decency, to offer, basic subsistence for these seriously ill people.

Fabrizio Ellul's article is a welcome contribution to raising awareness of M.E. during the week dedicated to it and M.E. sufferers, on Malta, are fortunate to have the support of a local group Like ME Sufferers Malta (www.mesufferersmalta), which not everywhere else in the World has but there is still a way to go to get the recognition that this often invisible, sometimes denigrated, illness deserves.

To do their bit towards M.E. Awareness Week (10 - 16 May 2009) and beyond, on Malta, carers, relatives and friends of M.E. sufferers, who are housebound or not so mobile, may like to download, print off and hand deliver some of the stunning eye-catching posters, designed by fellow sufferer Joss Morton for maximum display all over the Island. You can download the posters directly here http://tinyurl.com/paaqm3 or by contacting info@mesufferersmalta.org.
 
To join M.E. Sufferers Malta click http://www.mesufferersmalta.org/contactus.aspx or write to M.E. Sufferers Malta, P.O. Box 25, Pieta PTA 1310 Malta.

Dr John H Greensmith
www.mefreeforall.org
Bristol, UK

drjohngreensmith@mefreeforall.org
]]><![CDATA[Living with a potentially deadly condition]]>http://www.maltatoday.com.mt/2010/05/30/t3.html

by Gerald Fenech

Myalgic Encephalomyelitis is a rare condition which is not at all well known, although in the UK there are over a quarter of a million sufferers. GERALD FENECH spoke to Nicola Reiss, who lives in Malta and who was diagnosed with the condition some years ago

ME is definitely a harrowing condition to have to live with. Nicola Weiss does not let this situation deter her, but as one of the founder members of the ME Sufferers Association in Malta, she tries to remain as active as possible in all areas within her limitations.

Myalgic Encephalomyelitis is a neurological illness, but chronic fatigue syndrome (CFS) is the most common name given to this variably debilitating disorder that is generally defined by persistent fatigue unrelated to exertion, and which is not relieved by rest.

“I was diagnosed by Dr Charles Mallia Azzopardi and it was an ‘exclusion diagnosis’. After running a number of tests to rule out other possibilities he told me I had an immune system dysfunction. At first I was delighted to have a diagnosis. After 18 months of feeling awful, losing my job, seeing various doctors and having no idea what was wrong with me, it was a relief to be diagnosed with something specific. My delight soon wore off, when I began to research the illness and I discovered how little doctors know about it and how controversial it is.”

A typical example of the disease and its perception was discovered by Nicole when she was working overseas at the time, became ill and had long-term disability insurance coverage.
“My claim was turned down on technical grounds and a lawyer advised me that it was useless trying to pursue it. This is extremely common with cases of ME. Now I’m living a nightmare – too ill to work, no income, no cure, no understanding. I am totally dependent on my ageing parents who are both well into their eighties. At least I have no dependents of my own; I cannot imagine the distress of young fathers, diagnosed with ME, with children to support, or other young people who have only a bedridden life to look forward to. This illness is far more common among the young and active, and their lives are being destroyed by it.”

With her two Masters degrees, Nicole worked in several countries around the world, including working on the UN mission in East Timor. At the time she became ill, she had already been in East Africa for four years working as a project manager responsible for developing and monitoring education projects for children affected by war in the Democratic Republic of Congo.

But her life today is obviously much different, as the simplest of things becoming a daily struggle. “My work was fascinating and challenging and the job came with some great benefits, including a lively social life. It wasn’t something I wanted to give up. These days I have learned to pace myself – to manage the energy available to me so that I can look after myself without assistance most of the time.

“It takes all my energy to do essential activities such as grocery shopping, cooking, and laundry. I rarely do other housework because I’m not able to. I take frequent rests and use that time to read or do research on the internet. In the afternoons I have to lie down for around three hours and nap or listen to the radio. There are days when I’m not able to get up: orthostatic intolerance is a problem, as is dizziness and generally feeling awful.”
Around 25% of people with ME are completely bed-bound, with severe pain and extreme sensitivity to all noise and light. But what is worrying is the perception of the disease and the treatment methods being used which according to Nicola are totally wrong, as even doctors have been known for giving the wrong advice to patients suffering from ME.
“Although I was grateful for a diagnosis, my doctor had no advice on treatment or management of my condition. I had to do my own research and soon discovered that exercise makes the illness worse, and that the natural tendency to push oneself is highly detrimental. Indeed, for the preceding 18 months I had been pushing myself to work and to exercise and my health had only deteriorated. Everyone needs to know that exercise and pushing oneself to do more actually make the illness worse.”
Nicola insists that the health authorities in Malta must ensure that medical students and doctors receive correct bio-medical information and are kept up to date with the most recent research into the disease.
“The medical authorities also need to begin tracking cases of ME so that proper epidemiological studies of ME in Malta can be carried out. Prof. Luc Montagnier, who won last year’s Nobel in medicine, says ‘scientists have already uncovered a lot about ME, but this information does not reach professional healthcare personnel, and the disease is still not taken seriously. It is about time this changes’.”

Nicola is also critical of the government’s commitment to help disabled people, maintaining that ME sufferers are being completely ignored and left out in the cold.
“Government’s commitment should apply to all those who are disabled; social services should not be allowed to pick and choose whom they serve. At present people with ME are discriminated against. Even those who are bed-bound receive no disability benefits and no social services. This is simply not right – and it is certainly unchristian.”

Child sufferers represent another area of concern: often too unwell to attend school, apparently no extra provision is made for sufferers of the disease. The Young ME Sufferers Trust in the UK has a series of information leaflets designed specifically for children and teachers (www.tymestrust.org/tymespublications.htm).
“All teachers and head teachers in Malta should be aware of how this illness affects children,” Nicola says. “Well-informed teachers could be enormously useful in helping identify children with the illness. Early diagnosis and proper care for children can lead to their eventual recovery. I hope the government of Malta will choose information, fair treatment, and health over misinformation, prejudice, and permanent disability for the children and young people of the islands.”

More on ME
www.meactionuk.org.uk/magical-medicine.pdf

http://www.wpinstitute.org

European Society for ME http://esme-eu.com
]]><![CDATA[Facebook page set up for ME sufferers (2)]]>
http://www.timesofmalta.com/articles/view/20100606/letters/facebook-page-set-up-for-me-sufferers-2

by Aileen Scerri

I have a daughter who suffers from severe ME. It took her around three years of constant worry, consulting scores of doctors and specialists, going through many medical tests which did not show up anything abnormal, while she kept feeling very sick, losing weight and completely exhausted. Finally, and after eliminating all other possible diseases, our daughter was diagnosed with ME.

Unfortunately we have no specialists on ME in Malta and very few doctors admit the condition exists. The only support these people get is from ME Sufferers Malta.

There are no social benefits for these patients and they all suffer a great deal alone and are so tired they cannot make their voice heard.

I spoke to many government officials, including a minister a couple of years ago. I was promised that the illness would be looked into so as to include it in the list of disabilities where patients receive a pension; however, to this day nothing has materialised.

For this reason I strongly appeal to the government to invest in ME research, send healthcare professionals to train abroad and allow patients social benefits which they need so much.

Aileen Scerri,
Sliema]]><![CDATA[Taf x'inhi ME?]]>http://www.il-gensillum.com/news.asp?newscat=10&news=4543

minn Michael Briguglio

Tul ix-xahar li ghadda, attivisti ta’ ‘ME Sufferers Malta' ghamlu hilithom biex iqajmu kuxjenza dwar ME (Myalgic Encephalomyelitis). Izda kemm hawn minna li nafu x’inhi ME?

Skond l-Ghaqda Dinjija tas-Sahha (WHO), ME hija kundizzjoni newrologika li twassal ghal forom ta’ dizabilità. Din il-kundizzjoni ghandha sintomi varji bhal sturdament, ugigh, ghejja kbira u problemi konjittivi. Inzertajt naf lil min ibati minn din il-kundizzjoni, u nikkonferma li verament tohloq tbatijiet.

Bosta nies li jbatu mill-ME jkollhom joqoghdu gewwa, u hafna drabi fis-sodda. Ghalhekk, anki jekk jixtiequ jqajmu kuxjenza dwar il-qaghda taghhom, kemm-il darba ma jistghux jaghmlu dan.

F’Malta ma tezistix statistika jew ricerka komprensiva ohra dwar l-ME. Izda stimi preliminari ta’ Dr John H Greensmith, (www.mefreeforall.org), jispekulaw li hemm madwar 800 persuna li jbatu minn din il-kundizzjoni f’Malta, u hafna minnhom x’aktarx mhumiex konxji li ghandhom l-ME, minhabba nuqqas ta’ kuxjenza dwar din il-kundizzjoni.

In-nuqqas ta’ kuxjenza dwar l-ME f’pajjizna huwa rifless fl-assenza ta’ politika socjali dwar din il-kundizzjoni. Sfortunatament, dan qed ikollu impatt negattiv fuq nies b’din il-kundizzjoni kif ukoll fuq dawk l-iktar qrib taghhom. Nies bl-ME mhumiex intitolati ghal servizzi socjali specifikament minhabba l-kundizzjoni taghhom, u ghalhekk ma jibbenefikawx minn ghajnuniet li jinghataw lil nies b’kundizzjonijiet rikonoxxuti mill-Istat.

Alternattiva Demokratika tappella sabiex l-awtoritajiet ikunu iktar konxji tat-tbatijiet ta’ dawk bl-ME. Il-politika socjali tal-Istat ghandha tinkludi, u mhux teskludi lil dawn in-nies, sabiex b’hekk ikollhom l-istess drittijiet ta’ nies ohra b’dizabilità jew mard kroniku.

Bhala l-ewwel pass, ikun tajjeb li l-appelli ta’ ‘ME Sufferers Malta’ ma jaqghux fuq widnejn torox. Ikun tajjeb li din l-ghaqda, kif ukoll esperti medici fuq din il-kundizzjoni jinghataw widen mill-awtoritajiet. F’dan ir-rigward, ‘ME Sufferers Malta’ ghamlu numru ta’ appelli lill-awtoritajiet, liema appelli jistghu jinqraw f’www.mesufferersmalta.org.

L-appelli ta’ ‘ME Sufferers’ huma vuci ‘gdida’ fis-socjetà civili li qed tipprova twassal il-messagg taghha favur inkluzjoni socjali ta’ grupp li jhossu emarginat. F’socjetà demokratika, dawn it-tip ta’ appelli jisthoqqilhom l-appogg kollu necessarju. Id-demokrazija mhijiex biss dwar min jigi elett fil-Parlament u l-kunsilli lokali, izda hija wkoll dwar ir-rapprezentanza wiesgha tal-ilhna diversi f’socjetà inklussiva: id-demokrazija ta’ kuljum.

Michael Briguglio huwa c-Chairperson Alternattiva Demokratika – The Green Party

www.alternattiva.org.mt
 
]]><![CDATA[Facebook ghal persuni li jbatu bl-ME]]> IL-GENSillum - http://www.il-gensillum.com/news.asp?newscat=9&news=4583

Sur Editur

Ms Simone Manduca halliet messagg permezz tal-formola ta’ kuntatt fuq il-websajt taghna fejn issuggeriet li nifthu pagna fuq Facebook ghal min ibati bil-marda tal-ME (Myalgic Encephalomyelitis).

Zewg membri tas-support group taghna, Rosanne Caruana u Nicola Reiss, hadu l-inizjattiva u dan l-ahhar waqqfu din il-pagna fuq Facebook ghall-persuni bl-ME, li ghandha tkun estensjoni effettiva ghall-websajt taghna fir-rigward li titqajjem kuxjenza tal-ME kemm f'Malta kif ukoll barra, li tipprovdi informazzjoni dwar ir-ricerka fl-ME u biex toffri appogg lil dawk kollha li jsofru minn din il-marda kiefra, u lill-familji u l-hbieb taghhom.

Billi hafna mill-pazjenti bl-ME rari jirnexxilhom johorgu mid-dar u jissocjalizzaw, nittamaw li din il-pagna se ttaffi daqxejn is-solitudni u s-sens ta' telf li jhossu.

Il-pagna tal-ME Sufferers Malta fuq Facebook hija "maghluqa" – biex jigi evitat ‘junk’, u kif tispjega Nicky, "nies bla skrupli li juzaw dawn il-gruppi ghar-riklamar”; imma nixtiequ nistiednu lil kulhadd biex jinghaqad maghna.

Nixtiequ wkoll niehdu din l-opportunità biex nawguraw lil Ms Maria Blackburn ghat-twaqqif tal-pagna tal-Multiple Sclerosis Malta fuq Facebook bit-tama li titqajjem aktar kuxjenza dwar l-MS. Nistghu facilment nempatizaw mal-glieda ta’ kuljum taghha u t-tbatija li ggib maghha marda debilitanti li mhijiex maghrufa u rikonoxxuta.

REBECCA SULTANA
ME Sufferers Malta
L-Imsida


 
 
]]><![CDATA[Referenza ghal l-artiklu "Ta' 17-il sena...dejjem ghajjiena"]]> www.l-orizzont.com

Sur Editur,

Dawk kollha li jbatu bl-ME f’Malta u f’pajjizi ohrajn tad-dinja zgur li ma jibqghux ixxukkjati, kif kienet il-gurnalista Daniela Attard Bezzina, meta jaraw il-konsegwenzi li din il-kundizzjoni halliet fuq it-tfajla Denise Vella.

Issa, grazzi ghall-artiklu ricerkat u miktub tajjeb minn Attard Bezzina (Ta’ 17-il sena...dejjem ghajjiena, l-orizzont, 19 ta’ Mejju 2008) dwar l-effetti tal-ME fuq il-hajja ta’ din l-atleta u studenta brillanti – li qed taghmel kampanja f’Malta biex din il-kundizzjoni ssir aktar maghrufa, il-poplu Malti hu infurmat daqs kull poplu iehor.

Ghalkemm ma jezistix test li jaghmel dijanjosi definittiva tal-ME (Myalgic Encephalomyelitis), xi tobba jaghmlu dijanjosi wara li jeskludu mard iehor b’testijiet tad-demm u scan. Gieli jigi konkluz li persuna qed tbati mill-ME jekk ikollha mill-inqas erba’ sintomi ghal aktar minn sitt xhur. Dawn is-sintomi jinkludu ugigh kroniku fil-muskoli, glandoli minfuhin, deni baxx, irqad li bih ma tistriehx u zmien twil biex tirkupra wara li tkun ghamilt l-icken sforz.

Stharrig li sar minn zewg organizzazzjonijiet - Action for ME u The Association for Young People with ME – fl-okkazjoni tal-gimgha ddedikata lill-ME ta’ din is-sena, ikkonferma li l-ezercizzju, anke taht supervizjoni professjonali, jista’ jaghmel is-sitwazzjoni aghar.

L-organizzazzjonijiet l-ohrajn tal-ME fir-Renju Unit hargu stqarrijiet fejn esprimew thassib dwar il-Graded Exercise Treatment (GET). Xi whud irrakkomandaw li l-ezercizzju jitwaqqaf ghal kollox u l-mefreeforall.org tissuggerixxi li z-zewg trattamenti rakkomandati biex tittaffa l-ME jigu sospizi sakemm issir ricerka biomedika biex nifhmu ahjar il-kawza fizika tal-ME u b’hekk forsi tinstab il-kura.

Hafna jaqblu li l-ahjar haga meta tkun tbati bl-ME hija li taghmel biss kemm tiflah, minghajr ma tesagera, u mbaghad tistrieh skond il-bzonn. Dan hu aktar facli biex tghidu milli biex taghmlu u jirrikjedi dixxiplina fuqek innifsek.

Jinhass bzonn kbir li ssir ricerka biomedika biex nifhmu ahjar il-kawza fizika tal-ME halli forsi naslu ghal kura. Hawn ukoll htiega kbira ta’ sistema ta’ welfare ghall-perjodi meta dawk li jbatu bl-ME ma jkunux jistghu jahdmu. Din ma tkunx “ghotja”, kif gieli giet deskritta fir-Renju Unit u f’pajjizi ohrajn, izda sistema ta’ appogg li ghaliha n-nies ikunu digà hallsu meta kienu ghadhom f’sahhithom.

Ilkoll flimkien, Rebecca minn ME Sufferers Malta, Denise bil-kampanja taghha u Daniela minn l-orizzont, qed jaghmlu bicca xoghol tajba biex ikattru l-gharfien dwar l-ME, mhux biss fil-gzira sabiha taghkom imma fid-dinja kollha.

Dr John H. Greensmith,
ME Free For All
www.mefreeforall.org ,
 Bristol,
U.K]]><![CDATA[AD calls for more awareness on 'invisible illnesses']]> http://www.independent.com.mt

“Alternattiva Demokratika has always been on the forefront in increasing public awareness on issues related to the environment and its impact on health and social life. The 8 and 12 September are dedicated to invisible illnesses, which are those medical conditions which are not outwardly visible to others, including health care professionals,” said Mary Anne Zammit AD spokesperson for health and social protection.

“Our health is constantly at risk especially due to stress and pollution among other things, which are increasing diseases and illnesses. While visible illnesses get the necessary support and understanding, invisible illnesses, including a whole range of illnesses such as fatigue, migraines, debilitating joint and muscle pain, auto immune related disorders such as fibromyalgia, lupus, chronic fatigue and immune dysfunction syndrome, are more often than not ignored.

“More often than not these conditions are accompanied by chronic pain where peoples’ daily lives are seriously conditioned, with considerable impact not only on their body but also psychologically. Raising awareness on these invisible illnesses will help to alleviate suffering and contribute to more research on these conditions which may be linked to genetic and environmental factors,” she said.]]><![CDATA[Not 'all in the mind' - Health Division to reconsider its position on Chronic Fatigue Syndrome]]>www.maltatoday.com.mt

by Raphael Vassallo

The case for listing Myalgic Encephalomyelitis (ME) on the register of free national health services may be reopened in future, after research has shed new light on a little-known and controversial condition. 

The Health Ministry has confirmed with MaltaToday that a review is currently in progress.

To read the whole article, please go to:
http://www.maltatoday.com.mt/news/national/not-%E2%80%98all-in-the-mind%E2%80%99-health-division-to-reconsider-its-position-on-chronic-fatigue-sy

]]><![CDATA[Renewing the disability movement]]>www.maltastar.com

by Dr Andrew Azzopardi

Disability in Malta is one colossal issue that is estimated at affecting circa 30,000 citizens directly (going with the 5-10% WHO estimate) and at least another 80,000 family members.

Now that is one big lobby, considering that this amount of citizens adds up to almost one third of the population - a noteworthy lobby that merits at the least some attention from all stakeholders.

The disability agenda has turned outlandishly enough every year or so when our heart goes out to ‘these people’ and with watery eyes we run off to a phone and ring ourselves some cash for the ‘feebly’ - and this is where I start getting splitting headaches and irritable in the stomach! I imply people in the hot seats (policy makers, politicians, academics and grassroot movement leaders) to start addressing with more vigor this complex agenda as this is the time to be counted because we really are at a junction.

1. That we may square off. We need a well-organized Federation of Organizations of Persons with Disability and a strong and resilient Maltese Council of Disabled people. These two important structures need to be on the ball, reactive, strategic and well-organized. There is too much negativity and animosity.

2. This calls for the here and now. Transport reform needs to include accessible transportation that will allow all physically impaired people to travel – and this time round for real!

3. This minority will always be considered as in need before employment schemes don’t start leaving the desired impact. Disabled people can improve on their quality of life, first and foremost if they are gainfully occupied.

4. A basic human right and exigency. More residential services that include innovative models. KNPD should immediately strengthen the legal office that will be able to provide advice to disabled people and their relatives for this situation if they opt for such arrangements.

5. Agenzija SAPPORT needs to keep investing in community services. The latest cliché in Malta seems to be ‘waiting lists’. Genuine people who ask for help cannot be placed on waiting lists. Theirs is an issue that has to be addressed within proper coordinated time-lines.

6. I reiterate the need to have a dynamic personality that can draw energy and converge grassroot, academic, political and policy-makers towards a disability movement that has one clear objective ‘creating inclusive communities’.

7. KNPD has to re-assume the role of leadership, to converge the State and the grassroots, to create fora for public debate. Disabled people need to organize conferences, seminars, workshops, debates, round-tables that will help connect the invisibility of disability issues to communities that should be making the changes.

8. The media has a major role. The occasional oppressive and patronizing language keeps resonating in so many talk shows. Media houses have a responsibility to train their staff on what language to use and how to capture the right picture.

9. We need to strengthen the role of customer care for disabled people and their families. I’m not speaking about pseudo-psychologists that play the belittling game of ‘aw he’ u ‘xi tridni naghmel misses’, ‘daqt nibghatu ghalik’ clichés festooned with a smirky grin. This is about improved accessibility of services for disabled persons in hospital, apposite behavior of professionals amongst many.

10. Proper and intelligent debate on the UN Declaration on the Rights of Disabled Persons needs to take place whereby all those in political sensitive positions can realize the implications.

11. Local Councils need to build proper pavements, withdraw the license of inaccessible shops and find remedies within an acceptable time-frames. Apart from that public areas need to be made accessible and to my understanding the reasonability in the Equal Opportunities Legislation 2000 (Persons with Disability) needs to be used sparingly.

12. The University of Malta should provide more funds when it comes to research on disability issues. The effective disability studies courses currently offered by the KNPD to University of Malta students should be transferred and established as full blown study units to be made available to all students and at the same time create the operative space for KNPD to manage its core business.

13. We need to help people engage with the affirmative and social model of disability.

14. We need to look at the model of Independent Living Centers to contrast the heavily staffed and disabling model of the Adult Training Centers.

15. The dependency of Charity on disabled people and vice versa needs to stop. Adequate social policy needs to fill in the gaps.

16. The establishment of a Disability Studies Association is a priority to converge and mentor research being done at graduate and post-graduate levels in this theme.

17. There is still no consensus on what ‘inclusive education’ means to different people. Inclusive education is not about persuading people that inclusion is the best and only option for the rightful needs of all children but it should be a strategy that does not stumble in special schools, learning zones and other exclusionary and segregative practices.

With such a populous lobby one expects more. With so many dedicated disabled people and their relatives, with so many professional allies, specialists and experts, with so much ground gained in these last 20 years, we can surely get much more out of this struggle. This is a struggle that starts with us all – with our little change of ifs and buts – this starts with the renewal of the disability movement in Malta.

Dr Andrew Azzopardi
Department of Youth and Community Studies
Faculty of Education
University of Malta
andrew.azzopardi@um.edu.mt

Dr Andrew Azzopardi is a Lecturer with the Department of Youth & Community Studies, Faculty of Education at the University of Malta. His lecturing focuses on sociology, critical pedagogy, disability politics, inclusive & multicultural education, community management and development, youth & community studies. He is currently coordinating a Masters in Inclusive Education & Communities. Dr Azzopardi is also involved in the media.

He presents and produces current affairs shows on Radju Malta, Campus FM Radio and Favourite Channel TV. He also contributes a number of articles in Maltese and English newspapers on a variety of social policy and social affairs themes.

http://www.um.edu.mt/educ/youth/profile_Dr_Andrew_Azzopardi]]><![CDATA[M.E. sufferers advised to be cautious on ‘scientific breakthrough’]]>http://www.maltastar.com/pages/ms09dart.asp?a=4978

by John H Greensmith

People, all over the World, suffering with M.E. (Myalgic Encephalomyelitis) are, quite rightly, being advised not to build hopes too high for effective treatment, perhaps even a cure for their illness, until the recent American Study (by Lombardi et al, at the Whittemore Peterson Institute, Nevada), suggesting that a retrovirus may be a physical cause of their illness, has been replicated (New hope for ME sufferers as Scientists claim breakthrough, Malta Star, 19 October 2009).
There is an important prerequisite before any further research should be undertaken: this should be to ensure that we agree a universal set of diagnostic criteria for M.E. to be used each time, or else the results will not be comparable and firm conclusions could not be drawn.

Until something more exclusive comes along, if any criteria other than the Canadian consensus (Carruthers et al 2003) alone is used there will inevitably be some pollution of the sample of people tested, a reduction of the numbers in each illness category allowed to intrude and, therefore, a dilution in the confidence of being able to extrapolate conclusions to people only with M.E. and not any other illness within the Chronic Fatigue Syndrome (CFS) bundle of illnesses, with which it is erroneously associated and confounded.

To illustrate the problem, using the findings of this landmark American study: one might come to a very different conclusion about the way to proceed if every one of the 68 of the 101 CFS sample, who had XMRV in their blood, had a diagnosis of M.E. and the other 33 did not than if it turned out that none of the 68 at all or only some had a diagnosis of M.E. This demonstrates how important it is to agree a common universal standard to ensure that we are comparing like with like.

Unfortunately, since most doctors and researchers are not using the most discriminatory criteria available, many people with M.E. will be concealed within the CFS group, inflating the numbers and reducing validity and reliability, as we have seen.

In the meantime, all research shows that, if Cognitive Behaviour Therapy and Graded Exercise Treatment have any beneficial effect for people with any illness in the CFS set, they have either no lasting benefit, without relapse (CBT) or make matters worse (GET) for people with M.E. and should not be recommended.

With these concerns in mind, M.E. sufferers will hope that all M.E. charities, worldwide, will call for Government funding to be spent on biomedical research, seeking a physical cause instead of on psychological management techniques and insist on replication using standardisation by the most exclusive criteria.

Progress towards a cure for all these illnesses, not just M.E., has been hampered, for decades, by such lax experimental design of this kind, This landmark research has provided a great opportunity to take firmer control, we must not miss.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org
Bristol, UK]]><![CDATA[Take ME seriously please]]>www.timesofmalta.com

by Rebecca Sultana

May is Myalgic Encephalomyelitis (ME) Awareness Month and ME Sufferers Malta wishes to express its concern regarding the need for appropriate education and training of health care professionals.

We need to know how to clinically assess and diagnose ME patients at an early stage, based on a consistent set of up-to-date diagnostic criteria, and advise them on appropriate forms of health management.

According to research funded by the ME Association UK last year, early diagnosis and sympathetic supportive management appear to be the determining factors affecting prognosis in ME, that is, whether or not the patient develops a severe form of the disease.

There are some 5,000 papers of biomedical literature on ME going back to 1934, and it has been classified as a neurological illness by the World Health Organisation since 1969. Despite this, patients feel that most local medical practitioners, specialists and consultants are not up-to-date with such medical information, and this usually results in inadequate or non-existent medical help.

According to the UK General Medical Council’s document Good Medical Practice, a document advocated by the Malta Foundation Programme, keeping abreast of developments in medicine and medical science is a legal requirement for doctors; therefore, isn’t failure to keep au courant with current research on ME seriously unprofessional and deplorable?

ME produces significant disability and extreme pain with substantial disruption of daily activities among those suffering from the disease. However, many patients still face a lack of sympathy and at times outright hostility from professionals responsible for their care.

Unfortunately , for the most part , people suffering from ME are left to their own devices regarding management of their condition, especially when they are discriminately labelled as ‘malingerers’. Or even worse they are misinformed, given bad advice and then told to ignore dangerous symptoms arising from interventions, especially with graded exercise therapy.

The recent tragic case of Lynn Gilderdale shockingly highlights how debilitating ME can be, and how patients and their families urgently need all the support they can get.

When a diagnostic tool is not yet available or reliable, illnesses like ME, and others such as lupus, fibromyalgia, some cancers, and Lyme disease, are not easily detected and are given bad press, as was the case with MS and asthma before science caught up.

This reality makes keeping up with ongoing biomedical research on ME an even more crucial necessity. It is about taking an ethical stand, to make sure there are no inequalities of health provision and injustices.

ME Sufferers Malta calls on the government to join other European health ministers and chief medical officers at the 5th Invest in ME International ME/CFS Conference 2010 in Westminster, London, on May 24 in order to meet with the leading experts on ME and to learn about the latest biomedical research into ME and experiences in diagnosing and treating ME.

]]><![CDATA[Re: Living with a potentially deadly condition]]>
Go to pg 24 at http://newspaper.maltatoday.com.mt/latest_maltatoday

by Rebecca Sultana

Dear Editor,

The members of the ME Sufferers Malta support group wish to thank Gerald Fenech for the outstanding feature 'Living with a potentially deadly condition' (30/05/2010) about the hardships and ordeal faced by someone suffering from a debilitating illness like ME (Myalgic Encephalomyelitis) which also highlighted the patient's strong spirit and perseverance in the face of such adversity; which we have circulated throughout the ME community locally and abroad.

We just wish to point out a small error. Nicola Reiss is not a founder of the support group, but a co-founder (with Rosanne Caruana ) of our new Facebook page by the same name (ME Sufferers Malta). This FB page should be a great extension to our website as regards raising ME awareness in Malta and abroad, providing information on ME research and offering support to others who suffer from this dreadful disease, their families and friends.

Since people with ME are often house-bound and unable to venture out and socialise, we hope this page will target the loneliness and sense of loss many have to endure.

The ME Sufferers Malta Facebook page is a 'closed' group - to avoid, as Ms Reiss explains, "unscrupulous people who use these groups for advertising junk cures"; but we welcome all to join.

For more information on ME or if you wish to become a member of our support group, log on to www.mesufferersmalta.org or write to ME Sufferers Malta, P.O. Box 25, Pieta PTA 1310.

Yours truly,
Rebecca Sultana
ME Sufferers Malta]]><![CDATA[Lady living a miracle]]>
www.timesofmalta.com

Judith Ann Norton, a previous sufferer of Myalgic Encephalomyelitis (ME) and Parkinson's disease, claims that she's now cured of both without any medication. She spoke to Carla Gatt about her only source of therapy - gardening.

Hi, I'm Judith Ann Norton and I'm a miracle!" A fair lady clad in a black dress with sparkling blue eyes and a silvery white short crop stood up and held out her hand as soon as I entered the hotel lobby.

Ms Norton, a previous sufferer of Myalgic Encephalomyelitis and Parkinson's Disease, now claims she has been cured of both thanks to gardening. "Doctors say it's a miracle. I say it's gardening. I've taken no medication. I think that if you intend to be well you will actually be well!"

Born in 1942, Ms Norton believes that she first started suffering from ME in 1985 when she was living in America with her husband, a Polish film-maker. She was unhappy there and had started suffering from stomach ulcers. "I had previously been to Monument Valley, Arizona and followed training there as a weaver." So after her marriage fizzled out, she returned to Ireland and set up her own company, the Eager Weavers. They made a range of clothing and had their own workshop and retail unit.

She remarried at 36 and in the course of the following 10 years, she was very productive as she was training weavers under the Foreign Agcricultural Services contract, working for the UK Kent social services, and was also growing organic vegetables and herbs to sell in the Dublin markets.

Keeping busy, however, seemed not to reap the benefits expected as her health started deteriorating once again and she was suffering from muscle pain as well as exhaustion. Then her father passed away in 1994. That same year she suffered a stroke when she collapsed with Parkinson's. In 1995 her second marriage ended and in 1996 she was diagnosed with fibromyalgia, an ME-related illness. She was by then afflicted by increasing agonising pain in her muscles and ligaments and felt constantly fatigued.

"Eighty per cent of people who suffer from ME are women and for me this is all stress-related. Most of the time these women are surrounded by men who do not support them in their lifestyle and their life choices."

She then went to see a rheumatologist thanks to a friend who paid the bill. He prescribed lots of sleep and exercise but in 2006, things started to go wrong again. Her surroundings were of no help and Ms Norton found herself withdrawing from life. She was sleeping 13 hours a day, and had gained three stones. She became desperate. In a last bid to save her life, she called the Samaritans and told them that she was ready to end it all. They listened to her for hours and persuaded her to change her mind. They called her the next morning and asked her how she would spend her day.

"I told them that given the chance I would go to volunteer my services as a gardener at Airfield which I did and I have not looked back since."

In April 25, 2007, Ms Norton was employed by the head gardener, Emer, at Airfield, Dundrum, in south Dublin to work there for one morning a week. She is now working there four to six mornings a week and does not suffer any pain unless she sits down for too long.

"Gardening is my meditation and it is the only activity that channels my pain into something positive. I'm at my happiest when I'm raking, digging and planting and I feel no pain unless I sit down for too long.

"On February 28 this year I found out that my Parkinson had gone. I did all the tests necessary. In the MRI there was evidence of the stroke I had suffered in 1994 but it also showed that I've been completely cured. I feel constantly elated. I've got my life back and I'm so grateful."

Comments:

Joanna Jibiri
Since when gardening heals illnesses and pain. Aren't you ashamed. Only god can cure us and give miracles. gardening. That's hilarious

Tanya Selth
I myself suffer from M.E. and from what I read in that article, I believe that Judith Norton wasnt at all suffering from M.E. but rather FM which can have some very similar symptoms.

Exercise helps FM, so that gardening would of helped FM but with M.E., exercise often makes it worst due to the post excertional symptoms of M.E. and exercise certainly doesn't cure it.

Stroke, FM and along with some depression would explain her symptoms

Thou neurological M.E, M.E also usually has immune features,. usually presents differently eg fevers, sore throats.. flu like symptoms usually feature in M.E (but dont in FM).

Also in M.E there are usually problems with the hippothalamus/pituatory/adrenral axis eg low cortisol, low BP etc etc. With these lacking and lack of "flu like" immunological features. I just doubt very much she had M.E.

Reuben Sultana
While wishing well to Ms Norton I would like to point out a couple of inaccuracies in this article. The title refers to a "cure from ME" while further down the journalist states that Ms Norton was diagnosed with fibromyalgia (FM). Both M.E and FM share similar symptoms when it comes to myalgia (muscle pain) however both cases have to be treated differently. In the case of FM the patient is advised to perform some form of mild physical activity while for an M.E sufferer rest is recommended.

Although a definite test to identify the exact cause of M.E is not available as yet, studies have shown that M.E is triggered by one or more viral infections - Ms Norton did not experience any.

The article also suggests that M.E is a stress-related illness, which is very untrue. M.E has been recognised and is defined by the World Health Organisation as a neurological illness (code WHO-ICD-10-G93.3) since 1969, which definitely won't be cured by gardening.

Ms Norton's might have recovered through a miracle but M.E was surely not the cause of her ailments.]]><![CDATA['Miracle' lady did not have Parkinson's Disease]]>www.timesofmalta.com

by Anne Downing

Although pleased that Judith Ann Norton believes she has found the solution to her condition in gardening and is now well (Lady Living a Miracle, Weekender, September 20) I venture to say that she did not have Parkinson's Disease and certainly did not "collapse with Parkinson's Disease". Yes, I have known people with Parkinson's who find their symptoms disappear when they are engrossed in a particular hobby but as soon as they stop the symptoms return.

Parkinson's Disease is a progressive neurological condition and the symptoms only start to appear after the loss of about 80 per cent of dopamine producing cells. It is these cells which allow messages to be sent to the part of the brain which co-ordinates all movement. Therefore, with the loss of dopamine that part of the brain is unable to function normally. At present the reason for the loss of dopamine is unknown and there is no cure but the condition is helped by the use of various drugs and sometimes surgery. Research continues to find a cure.

It is to be regretted that an article such as this sends out the wrong message trivialising the effects both of people living with Parkinson's and also ME which in both cases can have the most devastating effect on daily life, not just for the person living with these conditions, but for all their family and friends. Not for the odd day or two but for the remainder of life.

Anne Downing,
President,
Malta Parkinson's Disease Association,
Zebbug
]]><![CDATA['Me' in ME]]>http://www.independent.com.mt

12 May is international ME Awareness Day. Five support group members from ME Sufferers (Malta) speak to Rebecca Sultana who set up the support group in January 2007, and share their feelings about the experience of ME. They are all of different ages and consist of three women, a man and a teenager.

Read on to find out what ME really is

Unless illness hits home, it's very difficult to empathise with the afflicted especially when the sufferer looks well on the outside. This is especially true in the case of ME (Myalgic Encephalomyelitis), a disabling chronic condition defined by the WHO (WHO-ICD-10-G93.3) as neurological. Although research has identified a number of abnormalities of the immune system, brain metabolism, autonomic nervous system and in energy metabolism, the cause of ME is still unknown and presently no cure or specific treatment exists.

Even more troubling is the fact that although the patient experiences multiple symptoms which continually vary in intensity, there is no medical diagnostic test for ME. A formal diagnosis is presently given if ailments persist for six months and other conditions are excluded; however specialised brain scans for ME have been proposed by a couple of international specialist doctors.

To avoid imposing my own experience of living with ME, I have simply transcribed what other local support group members have painstakingly shared with me.

Nicola Reiss, 53

"My experience is one of overwhelming frustration. I became ill two years ago with vague symptoms: inability to concentrate, slight dizziness, noise intolerance, brain fog and overwhelming fatigue. I thought it was stress. I couldn't pull my weight at work and lost my job. I decided to travel and rest before looking for another job. Six months later my symptoms and fatigue worsened and I knew something was seriously wrong. I was eventually diagnosed with ME.

Having a name to my problem was a relief, but then the frustration began. There is an abundance of confusion and misinformation about ME and what it is not: chronic fatigue syndrome. Some people (and doctors) see these conditions as being the same thing; others as separate and different.

I'm frequently dizzy and my head feels full of cotton wool. Some days I cannot leave the sofa. On good days I can barely walk for more than 15 minutes (I used to walk for hours!) I have no social life and TV drains me.

My only goal is to recover but doctors provide no clues. I constantly search the internet for advice and information but I'm faced with pages and pages of misinformation and garbage miracle cures. I am left with basics: rest and quiet, daily meditation and yoga practice at a manageable level, a healthy diet and a lymphatic drainage massage as frequently as financially possible; and focus on all the things I am grateful for – that I can live close to the sea, I have some savings, a supportive family and helpful friends and that I am still well enough (just!) to live alone and take care of myself!"

Nancy Gatt, 35

"ME for me is feeling ALWAYS ill no matter how I look on the outside. What I call remission periods are days when I can crawl outside and socialise a little while masking the continuous pain and fatigue. It means going to parties where the music and the hum of people talking hurt, where I can't eat anything and where I can't stand for long. It means deciding beforehand to enjoy it no matter what, and paying for it with at least three days of agony in bed.

ME is also a bewildering series of serious symptoms which hit you when you least expect it, so I cannot plan or commit to anything.

An ME relapse is a sensation which I believe dying people go through. You can hardly move, hardly breathe, can't open your eyes properly. People don't understand your whispery speech. It feels like something is crushing you. You can only lie down in the dark… thinking… through the fog and wondering how much worse it could get.

ME is needing others even when you don't have family.

ME is facing baffled doctors who cannot help you, leaving you with a sense of being out at sea on your own. ME is being ignored by the State and living in poverty. Not being eligible to receive financial help and/or support.

ME is having 17 years of all this suffering without a formal diagnosis, ridiculed and considered a lazy, attention-seeker by "friends", doctors and some family members; causing you to doubt whether they may be right, while immobilised in bed. It means having to forget the years of battling alone because I am finally diagnosed and it should be all over…."

Carol Ekins, 62

"I `crashed altogether' at 55, but now realise the constant exhaustion, infections and viruses in the preceding years were due to ME.

It's wearing and demoralising to suffer from a serious but "invisible" illness. Someone with a runny nose is shown more compassion. Trying to avoid queues is useless since I look well. I bear the excruciating pain and debilitating fatigue till it's my turn (leaning on something or sitting on the floor); then may spend a couple of days in bed for over-exerting myself. Sitting down offers no relief – background sounds, light, all sensory input is draining. A conversation can leave my legs in agony and immobile.

We receive no admiration for our super-human struggles. Often unintentional, but hurtful comments like `we all get tired', `your problem is that you focus too much on your health' are the order of the day".

Joe*, 44

"The first reaction I get is always: "You look perfectly well" or "it's all in your mind". Unfortunately, even the same specialist who diagnosed my condition had doubts about me, because his report read "the patient could be malingering". This made my chances of getting an invalidity pension – which does not suffice for a family of four – traumatically difficult.

Besides constant pain and fatigue, I feel as if I'm constantly carrying a very heavy weight on my shoulders. I get terrible migraine, back pain and no sleep. My mind hardly registers even the most basic things, so I keep asking questions to make sure I understand. Short-term memory has gone haywire.

Last week, while having a coffee with a good friend of mine, I couldn't even open the sugar sachet and had to ask for help. That's how physically weak I get. Being a man doesn't make anything different. I accept that I'm ill and never pretended to be tougher than women, even when I was well; but cannot accept that I'm jobless and inefficient. I'm the breadwinner, who is expected to provide for the family and not the contrary."

Erika*, 17

"My education was interrupted six years ago, after a strange tiredness started to take over. I couldn't take part in PE and even the slightest sound began to irritate me. Suddenly, I couldn't pull myself out of bed because of unbearable, piercing pain and many other symptoms. Blood-tests, check ups, CT scans, MRI and nerve test results didn't reveal anything wrong. We continuously changed doctors and got a diagnosis after two years.

I'm on steroids and go to hospital for treatments to try and lessen the intensity of the pain, which is very difficult to explain because I look normal. When very bad, I have to use a wheelchair or walking aid. I can't socialise because of ME. One moment I'm coping, half an hour later I can't stand any longer. I've lost many friends because few believe and accept my condition. Some people don't believe the hardships my family and I go through, and make life even harder.

ME is not how I look on the outside but how I feel inside. After six years of continuous pain, I still look forward to the day I get my life back."

*The name of only these two sufferers has been changed.

For more information on ME, log onto www.mesufferersmalta.org or write to:
ME Sufferers Malta, P.O. Box 25, Pieta, PTA 1310

According to sources abroad, suicide rates in ME are high and seem to be related to the current climate of disbelief and rejection and the inability of sufferers to receive adequate support and services. The National CFIDS foundation has a Memorial list of ME/CFS patients (http://www.ncf-net.org/memorial.htm) who have either ended their lives because of this or who have died of secondary illnesses attributed to ME.

An array of neurological symptoms including cognitive, autonomic nervous system and hypothalamic dysfunction, disequilibrium, neuropathic pain and sensory disturbances accompany the disabling physical and cognitive disabling fatigability of ME.]]><![CDATA[Incorrect information and lack of accurate and up-to-date knowledge about ME in Malta]]> http://www.independent.com.mt

From Ms R. Sultana

I was very shocked to read part of an otherwise interesting article “Worn Out” that appeared in the September issue of the Alive and Healthy magazine, issued with The Malta Independent on Sunday.

I and other fellow ME sufferers are very upset and nettled by the content under the sub-title “Chronic Fatigue Syndrome”, which is terribly misleading and damaging to people who were diagnosed with the debilitating condition.

CFS is notoriously and erroneously still used instead of or interchangeably with Myalgic Encephalomyelitis, no matter how long and hard international ME organisations and associations and patient representatives have relentlessly fought and continue to fight for the fairer and proper name ME.

Patients the world over detest the term CFS because it doesn’t do justice to all the symptoms (some of which are very disabling) they experience. Besides, fatigue is not the main or worst symptom.

Although ME has been recognised and is defined by the World Health Organisation as a neurological illness (code WHO-ICD-10-G93.3) since 1969, and although there is enough scientific research to prove this, there are still a few people who stubbornly think or believe that the condition is a form of psychological ailment or a variant of depression. This was assumed by the old school of medicine and diagnosis, but recent studies and ME research have proved this theory wrong.

ME is nowadays believed to be triggered most probably by a viral infection, but it’s still very early days and as yet no definitive treatment or cure exists.

Sophia Mirza and many more (listed on http://www.ncf-net.org/memorial.htm) have died of secondary illnesses attributed to ME. Moreover, quite a few on this lengthy list did not get the medical care they needed because their condition was not considered a physical one and they were treated as mental patients.

How many more have to die before such rubbish is eradicated once and for all?

Prescribing “exercise” and emphasising it must “be done regularly” could have disastrous effects on an ME sufferer’s health. There is evidence that moderate to severe sufferers have ended up bedridden or wheelchair bound following exercise regimes. In some cases, it has also proved fatal.

Physical activity is a positive and active strategy to help manage depression, but not ME. Some researchers have even suggested “exercise” as a diagnostic test for ME, for the simple reason that while people suffering from depression feel better afterwards, those with ME experience a worsening of symptoms and also relapses, depending on the intensity of the strain.

Telling sufferers to “confront emotional problems” is blatant nonsense. Depression can be a symptom of the condition, but it is secondary and arises as a result of being chronically ill for a long period of time. However, the real and majority of ME sufferers’ emotional problems are caused by people’s ignorance and inability to empathise, and by those who fail to take the responsibility of learning about conditions properly before putting pen to paper.

Regrettably, such misconstrued material (which I am sure appeared due to ignorance not insensitivity) perpetuates the lack of accurate and up-to-date knowledge about ME in Malta and, as a result, leads to further misunderstanding and disbelief about the true seriousness of the condition. And while the sufferer retreats further into isolation, any hope for biomedical research into the causes, consequences and treatment of ME vanishes over the horizon.

Coming across such incorrect information in a reputed health magazine that has a wide readership is not only very distressing but also potentially very dangerous.

Rebecca Sultana
MSIDA

'Worn Out'
(Malta Independent on Sunday, Alive and Healthy magazine September 2008)

Feeling limp and unable to move in the morning can be the result of one too many drinks the night before. it can also be a sign of an underlying problem.

Weakness and fatigue are not the same thing, though the two terms are often used interchangeably. They are symptoms, not diseases, so identifying them correctly is not only useful, but essential. The symptoms themselves can be caused by a variety of health problems so reliable diagnosis means looking at other lifestyle issues. Knowing the difference between weakness and fatigue can help you explain your symptoms better to your doctor, which helps identify the underlying cause and it's appropriate treatment.

Briefly weakness is an apt description for a lack of strength and the general feeling that you need to make an extraordinary effort to do ordinary things. Fatigue is what you feel when you're tired and exhausted or simply lack energy. If you find simple movements unusually difficult - lifting your arms say, or stretching your legs when sitting down - then you are feeling weak. If you are feeling tired and don't feel you have the energy to perform simple tasks, then you're suffering from fatigue.

If weakness or fatigue last more than two weeks but not more than three months, then lifestyle factors are likely to be the explanation. Feeling weak or tired after a bout of flu, for instance, is not unusual. If you've suffered from stress recently, then weakness and fatigue are the natural result. You would do well to seek medical advice, however, in case they are related problems that need to be addressed. If your symptoms last longer than three months and are accompanied by other symptoms such as weight loss then a doctor's attention is essential.

WEAKNESS

If your weakness is slowly getting worse, see a doctor as soon as you can. If your muscle weakness is sudden and accompanied by loss of function see a doctor immediately. The loss of function may indicate a problem in the brain, such as a stroke.

Feeling weak after a period of exertion is to be expected, particularly if you are not normally very active. Walking all day when on holiday for instance, when you're normally sedentary, is bound to make you feel weak, tired and footsore. Your symptoms should clear up naturally within a few days. If you feel weak all over and have done nothing particularly strenuous, then a health problem is likely to be the cause and you will need to see your doctor for advice and treatment. Weakness can be caused by the following.

    * Low body levels of electrolytes, such as potassium or sodium.
    * Difficulties in the thyroid gland affect physical strength. A low level of activity causes symptoms that include weakness and fatigue, a general feeling of lethargy, depression and memory problems, weight gain and constipation, dry skin and an inability to tolerate cold. Other symptoms include brittle nails and coarsening of thinning hair. An over active thyroid gland causes muscle weakness and fatigue, but weight is lost rather than gained. other symptoms include anxiety and irritability, an increased heart rate and an inability to tolerate heat.
    * Rare conditions such as Guillain-Barre syndrom that causes weakness in the arms, legs and other muscles and can have serious consequences if left untreated, or Myasthenia gravis that causes rapid muscle fatigue and overall weakness.

 FATIGUE

If your fatigue is accompanied by other symptoms or has lasted more than two weeks, seek medical help as the cause maybe serious.

Tiredness or exhaustion and a lack of energy define fatigue. This can range from mild to severe and can be due to overwork, a lack of sleep, worries, boredom or a lack of exercise. Fatigue is also a normal outcome of illness such as a cold or flu. Mild fatigue normally clears up a few days after the obvious cause e.g. when you resolve your problem or you recover from your illness. Some types of medication can cause fatigue (ask your doctor or pharmacist for advice beforehand) as can over indulgence in alcohol or tea and coffee. Illicit drugs can also cause fatigue. Medical causes for fatigue include the following.

    * Thyroid problems - the thyroid gland regulates the way the body uses energy so any disruption of normal functioning will affect your energy levels.
    * Diabetes and other metabolic disorders that prevent your body's cells from drawing glucose out of your bloodstream to be used up for energy.
    * Heart problems that affect the supply of oxygen to the heart muscle and to the rest of your body.
    * Anaemia / lowered haemoglobin - the blood compound used to transport oxygen around your body.
    * Diseases in the kidneys or liver that affect their ability to clean toxic substances out of your system.

CHRONIC FATIGUE SYNDROME

Severe, persistent fatigue is different from temporary fatigue caused by exertion or mild illness. If there is no obvious recent physical cause for fatigue that simply won't go away, then the root problem might be psychological Depression and anxiety, for instance, can drain your energy and, in extreme cases, can lead to thoughts of suicide. The situation can be aggravated by feelings of guilt or shame, or even embarrassment to having to admit to an emotional problem. Treatment for this condition is not dramatic or extreme and does not automatically mean hospitalisation. A visit to your doctor could help clear up any anxiety you may feel about dealing with the problem.
 
PREVENTION

Minor lifestyle changes can help prevent mild fatigue. Obvious steps include.

    * Making sure you get enough good quality sleep.
    * Controlling your stress levels.
    * Eating a balanced diet. Skipping meals especially breakfast, is a bad idea. You need a steady supply of energy throughout the day even when you're sedentary much of the time.

Less obvious steps are learning to control emotional problems rather than ignoring them or pretending they're not there. Denial of emotional problems is exhausting and problems don't go away just because they're off our radar screen. Surprisingly, exercise is one of the best defences against fatigue. It needs to be done regularly to be effective. When you're too tired for vigorous exercise, take a short walk to keep up the habit.]]><![CDATA[Re: New hope for ME sufferers as Scientists claim breakthrough]]> http://www.maltastar.com/pages/ms09dart.asp?a=4891

by Sara Tayler

Both ME and CFS have been studied as infectious diseases since the 1940s and 1980s respectively. Both EBV and HHV-6A have been repeatedly associated with this neuroimmune disease, as has parvovirus and enteroviruses, but not found to be causal. XMRV may solve at least parto of this riddle as retroviruses are notorious for reactivating other latent viruses. These viruses also cause other diseases which can be co-morbid.

The XMRV study had 20 CFS patients with a lymphatic cancer that is exceedingly rare in the general population, but is believed to be caused by XMRV. EBV also causes cancer and biomedical research shows that HHV-6A is the equivalent of gasoline on a bonfire when present with other diseases.

According to Dr. Nancy Klimas who is a world renowned expert in the field of CFS the refers to the symptoms of CFS saying, "The big one would be post-exertional relapse. There aren’t many illnesses that get worse when you exercise. . . . There are eight criteria, and a patient has to have four: post-exertional malaise, unrefreshing sleep, impaired memory or concentration, muscle pain, multi-joint pain, headache, tender lymph nodes and sore throat. They have to be more than six months in duration for adults.

Many of these symptoms are characteristic of viral infection and brain damage caused by disease. Also, a lot can happen in six months. Neurotropic and cardiotropic viruses left unchecked can cause damage throughout the body. Experts know this can create a cascade of symptoms that while not directly viral can be caused by viral damage to multiple areas of the body.

Dr. Klimas, who is the former president of the largest international group of biomedical and behavioral experts on CFS and ME (IACFS/ME) as well as an AIDS researcher, knows how sick both sets of patient are. In a recent New York Times article she states, "I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. "]]><![CDATA[Hope for ME sufferers]]>www.di-ve.com

by SheghleyOgilvie - editorial@di-ve.com
A landmark study has brought scientists a step closer to understanding the causes of chronic fatigue syndrome (CFS) or ME.

The study, conducted by scientists from the Whittemore Peterson Institute, Nervada, USA, was the first to isolate particles of the recently identified retrovirus, XMRV, from the blood.

In the new study, the researchers tested blood from 101 participants, all of whom are diagnosed with CFS or ME.

They found 68 had XMRV in their blood suggesting the virus is present within the blood of two-thirds of ME patients compared to under 4 per cent of the general population, raising the possibility that XMRV may be a contributing factor to ME.

“This is the breakthrough that we have been hoping for,” said Annette Whittemore, founder and president of WPI and mother of a ME/CFS patient. “Now we have scientific proof that this infectious agent is a significant factor in ME/CFS.”

WPI medical director Daniel Peterson explained that as a result of the research “patients and their doctors will soon have a blood test to verify their diagnosis and provide the answers that they’ve been seeking”.

In the 1980s, CFS and ME were controversial conditions as some medical authorities doubted they were genuine physical conditions instead viewing them as fundamentally psychological.

The conditions are characterised by chronic fatigue and muscle pain including cramps, weakness and headaches, and in some cases symptoms are so severe patients are confined to bed.

While these findings do not establish that the condition is caused by XMRV they bring scientists a step closer to discovering treatment options for sufferers of this immensely complex illness.

Information relating to XMRV associated neuroimmune disease can be found at www.wpinstitute.org.

Those with XAND (ME/CFS) and/or fibromyalgia, interested in participating in research studies to further the development of diagnostic tests, should complete the questionnaire available at www.wpinstitute.org.
 

]]><![CDATA[Awaiting an early true cure of ME]]>
I am pleased that after the ME (Myalgic Encephalomyelitis) article appeared in the Weekender a number of people have contributed with possible research about the condition or treatments to help with the symptoms. However, I feel the need to clarify a few points after Albert Cilia Vincenti's contributions in answer to Rebecca Sultana's letters.

Ms Sultana is the energy behind the ME support group in Malta which she started on her own initiative more than a year ago. Although a severe sufferer herself she has dedicated her limited energy to surfing the web looking for possible treatments and making contact with international ME support groups in order to send this info on a daily basis to the members of her support group.

I know for a fact that she has never held back any information about any supplements or treatments even when she is not in favour of trying them herself. Ms Sultana also sent us an e-mail about the VegEPA supplements and asked for help from UK ME support groups to guide us about this treatment. As she correctly stated, it is not a cure but may alleviate certain symptoms.

After confirming with our doctor that it is safe for my daughter, who suffers from ME, to try out this treatment, I have now placed an order for VegEPA capsules. Since a high dose of this supplement needs to be taken daily, it is offered at a special price for ME sufferers living in England but, alas, that is not the case for us Maltese.

I must say that after years of trying out every possible cure on the market, our expectations are not very high. Over the past three years a trial and error attitude has actually cost my family thousands of pounds in possible treatments which claim to have cured some sufferers but I must say that my daughter's ME is now more severe than before. For my daughter, living with ME boils down to proper pacing and learning how to use her limited energy wisely. In the meantime, we pray that one day soon someone does come up with a true cure and not just a possible treatment!

Sylvana Vella
Marsascala]]><![CDATA[The Problem With ME]]> The Times of Malta -  www.timesofmalta.com
May 2008

Ever-continuing medical and political dissensions swirl around the illness Myalgic Encephalomyelitis,which is celebrated internationally this week. Carla Gatt learns more about it and the heaps of work carried out by ME Sufferers Malta during its short history.

The name for the illness Myalgic Encephalomyelitis (ME) was coined by Melvin Ramsay way back in 1956 following his observation at the Royal Free Hospital epidemics department in London between 1955 and 1957.

The statistics with regards to ME/CFS are still hazy, as no reliable epidemiological studies have been done. In the UK, the official department of health estimates patients with ME to be around 0.02 to 0.04 per cent of the population, which is about 120,000 to 240,000 of the population. In the US, it's reckoned that there about a million sufferers.

An epidemiological study led by Derek Pheby,at the University of East Anglia, and sponsored by the Big Lottery is due to report its findings next year. A current chief medical officer, Prof. Sir Liam Donaldson commissioned a working group on ME. It took three years and in 2002 Prof. Donaldson concluded that ME "is a real illness for real people... left in the wilderness too long".

ME is a neurological disease and the term means Myalgic (muscle pain), Encephalo (related to the brain), Myelitis (inflammation of the spinal cord). Byron Hyde wrote that one of the reasons why physicians were sure they were dealing with an inflammatory illness in the brain when they first encountered it, was that patients in both endemic and epidemic conditions were having this curious diffuse brain injury.

Eighty per cent of those who suffer from the condition do not get better and according to US statistics provided by the Centres for Disease Control only four per cent of patients had full remission.

The quality of life is particularly and uniquely disrupted and all patients incur some kind of loss such as loss of jobs, relationships, financial security, future plans, daily routines, hobbies, stamina and naturalness. Activity is reduced to basic survival needs for some and researchers have discovered that the extent of loss suffered by the patients was devastating, both in number and intensity.

What seems to be evident in triggering ME/CFS is a disruption in ion channels in the cell membranes, which can procure a logical basis to the fluctuating symptoms. When the sodium channels are blocked, sodium enters into neural tissues and muscles, followed by water, which causes the neural tissues to swell. Both electron microscopy and laser scanning microscopy have observed this occurrence.

Around 25 per cent of those who are severely affected are house-bound and this includes those who are bedridden, paralysed, can't speak and have to be tube-fed and given 24-hour care.

ME is not synonymous with being tired all the time and "fatigue" is not a defining symptom, not even necessarily a symptom that characterises this complex affliction. If a person is constantly fatigued or tired this should not be taken that he or she is suffering from ME. Fatigue or feeling tired all the time is nowhere close to the specific type of "paralytic weakness" or "muscle fatigue" which are characteristic of ME and which affect every cell and organ in the body, including the brain and the heart.

ME is not just a symptom but an illness recognised by the World Health Organisation since 1969 as a distinct neurological disorder. More than 64 diverse symptoms have been automatically documented in ME, several of which pertain only to this illness.

The variability of symptoms varies from day to day and hour to hour. Chloe's* ME is moderate to severe and quite severe sometimes. She tends to have more bad days and lesser good days.

Sometimes there are no good days for months. "When I am at my worst I cannot get out of bed due to massive exhaustion, very heavy legs and body and pain. Glands swell up and cause discomfort. My breathing suffers even to talk and I get panic attacks and chest pains.

Sometimes I get low-grade fever or temperatures below normal. I feel very cold in summer. "At times I experience pain all over my body and stomach discomfort that keeps me awake all night. Nightmares and disturbed sleep adds to the vicious circle because since I don't sleep well, I get up more exhausted and ME symptoms get worse. I have to keep an eye mask because the little light that comes in from the closed blinds gives me migraine and hurts my eyes. Even traffic noise outside hurts and makes me very irritable.

"The glare of television and computer screens can be too strong and painful. Reading a book is quite exhausting so the frustration is immense. "Stomach indigestion after eating even very little makes me wish I could stay without food. Constipation often follows and adds to the general discomfort.

"Besides the physical exhaustion and overall pain, two of the worst symptoms that bother me most are disturbed vision caused by weak eye muscles which cannot be corrected by glasses. This causes an inability to focus as well as blurriness and dizziness.

"The other more disabling symptom is cognitive dysfunction and impaired memory. When I am having a bad day my brain fog and mental exhaustion are so severe that I won't be able to make sense of a simple sentence. I won't be able to connect the meaning of the first part of the sentence to the last part. It feels as if someone is talking to me in a language I never learnt. I feel really confused and dumb!

"On days when ME is not so bad I am happier and more hopeful as I don't need to stay in bed and on the sofa all day. I can write a couple of e-mails without having to pay for the effort later or do some cooking and light housework. "Sometimes I can walk for 15 minutes non-stop on my own and feel fine. I can invite my sister home for a couple of hours.

The light hurts me less but I still have to wear sunglasses when out and keep the blind slightly open. Also, I can sleep better and have less nightmares. I can resist the noise better and have a discussion without losing track of what is being said. Once in a while I can go out for a meal with my husband."

Chloe had to stop driving two years ago. After she had a car accident, she realised that when she was looking for cars on one side of the road, by the time she would have turned her head to check for cars on the other side, she would have already forgotten what was on the first side.

Like Chloe, people with ME are easily "overloaded" by sensory stimuli as they are surrounded by too much information, emotional stress and physical effort. They find it extremely difficult to block out background noise to listen to conversations even at a party. This "overload" phenomenon may lead to a "crash" where the person becomes immobilised by physical and mental fatigue. The cognitive symptoms become worse as the person becomes more fatigued.

"I am more house-bound than not and most of the time hammered to the bed or sofa. I spend most of my time alone because people drain me and then I 'crash'. Even talking on the phone exhausts me. "The loneliness is unbearable at times and therefore depression ensues. Sometimes I force myself to get out of the house even when I'm feeling ill. Then I have to pay the consequences.

The light, the noise, the people, the commotion outside is too much stimulus for the brain and I collapse with exhaustion. "I have lost many friends, many opportunities and even my job.

Sometimes you just feel worthless, useless and a burden to everyone else. Sometimes you wish you were never born. "I have been seeing a homeotherapist for a year or so now and sometimes certain remedies can help alleviate symptoms for a period of time. At present, I am not so down and I'm hopeful that the remedy will keep on making me better even though there is no cure yet!

Mark* is British but he moved to Malta as one of the factors he was suffering from was Seasonal Affective Disorder (SAD). He has been living with ME for about 10 years now but it took some years before he was actually diagnosed with it.

He describes this period of his life as being "very frustrating" as he kept going back to hospital to find out what was actually wrong but they had no information on what the problem was. In winter of 1999/2000 it got to the point where he was having to sleep between 16 and 20 hours a day, and had no energy at all when he was awake.

"A typical day when my symptoms are bad leaves me trapped in the house, barely able to get out of bed. Even concentrating on watching TV or reading a book is very difficult. When my condition is very bad the symptoms I experience not only include fatigue and 'brain fog' but also nausea and physical exhaustion.

"I also have a form of multiple food intolerance, which can be treated by desensitisation therapy. "My condition has been alternating between good and bad periods over the past several years. But even when I'm 'good' my energy is still far below that of an average person.

Most of the time I've been able to work but at the cost of being unable to do anything else. I would usually collapse into bed as soon as I get home, sleep for a couple of hours, watch TV and then go back to bed. At weekends I would rarely go out as I'd need to rest in order to get through the next working week.

"The greatest difficulty I faced was with unsympathetic managers where I worked. This increased the amount of stress I had which worsened my condition. I have worked with others who were far more understanding and gave me more flexibility especially in coming in late as I tend to be at my worst in the morning."

Despite her ill-health and confined to bed every now and then due to ME, Rebecca Sultana is one of the most vocal when it comes to creating awareness on this condition, as well as being the one to set up the support group for ME which even has its own website: www.mesufferersmalta.org .

"The members in our support group suffer from various degrees of ME and not all sufferers have similar or all the symptoms. I happen to be one of those mostly affected."

John Greensmith, a 54-year-old research psychologist, has been unable to work or have a normal social life since he was diagnosed with ME 20 years ago. He now runs ME Free For All. org ( www.mefreeforall.org ) , a single meeting place for people with ME, their carers, doctors and researchers, from all over the world, to gather in order to exchange information and mutual support.

"Around Christmas time of 1987, like many others, I had some flu-like symptoms. I tried to soldier on but wasn't getting better, so I went to see the doctor. I was diagnosed with acute viral pneumonia. A week later, my GP said that my lungs were better and that any other ill feeling was just post-viral debility, which might hang around for a few weeks.

 "Unfortunately there is no standard, universally recognised, test for ME. A diagnosis is made by eliminating other known illnesses usually by a battery of blood tests and sometimes an MRI scan.

"ME remains a controversial illness and some doctors openly declare they do not believe it exists, much to the vexation of sufferers. If the patients have a previously good attendance at work or school and only visit the doctor with real health concerns, it is unlikely that it is malingering or hypochondria."

In 2007, Nice, the National Institute for Health and Clinical Excellence, published its guidelines. It recommend only two management or coping strategies for everyone: one of which, Cognitive Behaviour Therapy (CBT) has been developed for psychiatric illnesses, such as anxiety and depression and which remains unproven after four decades and has no lasting benefit, and the other, the Graded Exercise Treatment (GET), which makes some patients irrevocably worse after it has been given.

Although the Nice guidelines say that the treatment should be jointly planned and agreed between therapist and patient and that the patient may decline to have anything at all or ask it to be stopped if it makes them feel uncomfortable, this does not really happen because of the authority of the therapist, or the displeasure of the GP and thus there is a fear of being removed from the list.

"These 'clinical champions' have managed to bulldoze their way past everyone who could have guided them in a more advantageous direction, and now find themselves unable to provide any enduring evidence that their way is working, let alone assure us that their method is doing no harm to anyone.

"It is incredible that some experimental work still in progress (which is a practice unthinkable and unethical in other areas of medical research such as drugs and vaccines) after it has already been introduced, is in use and recommended by the government's advisers.

"A recent conference held by the Royal Society of Medicine entitled 'Chronic Fatigue Syndrome (not Myalgic Encephalomyelitis, even though its agenda will dramatically affect all those affected by ME worldwide) is evoking too much correspondence. Only a select few were invited to hear those in favour of expanding this unproven and unhelpful way excluding ME suffers, those with an alternate opinion on the matter and the media. No transcripts were made available.

 "I urge doctors to aim for an early diagnosis and to support calls for more biomedical research and I hope that political representatives will ensure that the illness is recognised and sufferers have sufficient benefits to live on while they are unable to work."

* Names have been changed to protect identities .

A helping hand for sufferers

There are no ME specialists in Malta so a diagnosis is never really on the books. Getting an early diagnosis can help since once the sufferer is cognisant that the illness is not a figment of his imagination as some ME sufferers are made to believe, they do not keep trying to fight it off.

The sufferer has a better prognosis if she or he is made to rest in the initial stages of the illness and a good chance of not being severely affected by it. Many could be suffering in silence because they would not be aware what is wrong with them. Lack of a diagnosis has led to suicide in some cases abroad.

Awareness in schools is critical . Teachers sometimes believe that students are being lazy when they do not contribute or appear to be staring or slow. In most cases at school, students who suffer from ME get bullied as they tend to keep to themselves because being with others can be too much of a strain.

Those children who feel too unwell to go to school miss out on a proper education since ME is not considered a disability in Malta and private tuition is not given for free by the government. Families cannot always afford to pay for private tuition since families' pockets would be already drained due to specialists' fees for various symptoms apart from special food, pillows and sunglasses to alleviate the pain.

Another ordeal for students suffering from ME is the examination system where they are not given permission to work at a slower pace or have their exams spread out so that they can have enough rest between the sessions.

The medical profession is not aware of how sensitive sufferers are to medication . The side-effects could be worse or bigger in number than the symptom the medication is supposed to ease. If medical practitioners knew the symptoms of ME well and how the body of an ME sufferer reacts to medication they would be more careful.

Even though counselling can be of some benefit to certain ME patients, no amount of therapy will make it better. The major problem with the perception of ME is that in some parts of the medical and the wider community there is still the belief that it is a psychiatric disorder.

ME Sufferers Malta's youngest member is Denise Vella . The last three years have been difficult for Denise as she found it hard to come to terms with her condition. Denise is now attending Sixth Form and on her first day at school she spoke about her different needs, what she could manage to do and what she couldn't.

She has decided to focus her Systems of Knowledge project on pushing for ME awareness, which entails a lot of work and energy on her part. Sponsors were difficult to find but an anonymous Maltese company has promised to help and the photographer came up with the idea of using Denise for the poster.

Her parents will be distributing awareness posters and leaflets in hospitals, schools, clinics and wherever will make a difference to the cause of ME sufferers.]]><![CDATA[For a better understanding of ME]]>www.independent.com.mt

From Ms R. Sultana

The most likely reason why very severe ME sufferers die is due to inflammation in the brain and spinal cord, which has been confirmed in a number of post-mortem cases around the world. However, a new phenomenon is becoming more common.

The second death of an ME sufferer has featured in the UK news in the last three months. Last September, psychologist Nicola McNougher travelled to Switzerland to take her own life, using the country's legal "assisted suicide" system, after suffering horrendous years of torment, pain and misunderstanding. She called ME "a nuclear bomb to the brain and body".

Two weeks ago, a mother was arrested on suspicion of mercy killing her very severely ill and totally bed-ridden daughter Lynn Gilderdale (whom she had lovingly nursed for 17 years) – http://www.dailymail.co.uk/news/article-1092865/Devoted-mother-arrested-mercy-killing-yuppie-flu-daughter-died-massive-morphine-overdose.html.

The mother had been campaigning tirelessly for ME awareness and support, but was constantly let down by "the system" and the medical profession (http://news.bbc.co.uk/2/hi/health/1234297.stm ). She once
said: "Lynn is neither one nor the other. She is stuck in that room, not dead, but not alive properly."

In both cases, neither of which is unique, the sufferers were met with hostility and scepticism. Sadly, doctors often blame the patient, labelling them as malingerers or attention seekers who suffer from "yuppie flu" and giving them bad advice, instead of admitting their lack of knowledge about ME. Sufferers experience this abuse while silently battling what Dr Mark Loveless (head of the AIDS and CFS clinic at Oregon Health Sciences University) at a 1995 congressional briefing described as "effectively the same every day as an AIDS patient feels two weeks before death".

People suffering from ME can understand that many find ME a very complex and confusing illness. It is so for the affected, let alone for those who do not experience the life-destroying disease. ME sufferers know that, like other things unexplainable, it's easier to pretend the illness doesn't exist and shun it. However, sufferers can never accept that ME is put under the umbrella term "Chronic Fatigue Syndrome" and treated as a form of depressive condition that could be fixed by counselling (Cognitive Behavioural Therapy) and exercise (Graded Exercise Therapy).

How many Nicolas and Lynns have to die before ME sufferers and their illness are taken seriously?

Sufferers in the UK describe the present situation for ME patients as a national scandal, but what can we say about the situation in Malta where the number of people (not sufferers or family) who are aware of this debilitating illness could be counted on fewer than the fingers on one hand?

There is an urgent need for a better understanding and recognition of ME as a physical and neurological illness (WHO-ICD-10-G93.3), so that the medical profession will treat sufferers accordingly and not neglect them and, more importantly, so that there will be more funding for serious biomedical research on ME and therefore more hope of finding a definite and permanent cure.

Rebecca Sultana
ME Sufferers Malta]]><![CDATA[No 'miracle' involved in 'cure' because lady did not suffer from ME (3)]]>www.timesofmalta.com

by Rebecca Sultana

I refer to an article that appeared in the Weekender (September 20) called Lady Living A Miracle.

I and fellow ME sufferers are appalled at reading such a misleading and misinformed piece on ME (Myalgic Encephalomyelitis) published on one of Malta's leading and reputable newspapers.

Has the journalist researched her topic before interviewing someone who clearly is confused and misinformed about the condition herself?

Although ME has been recognised and is defined by the World Health Organisation as a neurological illness (code WHO-ICD-10-G93.3) since 1969, and although there is enough scientific research to prove this, there are still a few people like Ms Norton who stubbornly believe that the condition is "stress-related" or a form of depression. This was assumed by the old school of medicine and diagnosis, but recent studies and ME research have proved this theory wrong.

Anxiety, stress and depression can all be symptoms of ME, but they are secondary and arise as a result of being chronically ill for a long period of time. However, the real and majority of ME sufferers' stress is caused by people's ignorance about the condition and its severity, by those who are unable to empathise, and by those who fail to take the responsibility of learning about conditions properly before putting pen to paper.

Ms Norton states that her ME started when she became very unhappy and started suffering from stomach ulcers. Stomach ulcers are a result of anxiety and not a symptom of ME.

Secondly, it is impossible, even ridiculous, to imply that a person suffering from ME could train as a weaver, go through the severe strain of setting up one's own business, then, furthermore, go through the pressure of remarrying, while training other weavers, working for social services and growing her own food to sell to a demanding market.

This discourse is not only hurtful but also insulting to all those who genuinely suffer from a disabling and incapacitating illness like ME.

Later, following three emotionally traumatic events, Ms Norton claims to have been diagnosed with Fibromyalgia. Fibromyalgia is not an "ME-related illness" as the article asserts. Although their symptoms sometimes overlap, Fibromyalgia and ME are two distinct illnesses that require different management. The former sufferers seem to benefit from some form of exercise, while the latter feel worse.

Having said that, it is very unlikely that Ms Norton ever had Fibromyalgia either because sufferers hardly manage to take a wink due to relentless pain and restlessness, let alone sleep for "13 hours a day". Excessive sleep is a characteristic of depression.

Besides being incorrect and deluding, suggesting that "gardening" can cure ME could have disastrous effects; especially on newly diagnosed ME sufferers who don't know enough about the condition, and who might have been fascinated by Ms Norton's miracle story and decide to follow suit.

There is evidence that moderate to severe sufferers have ended up bedridden or wheelchair bound following some form of physical activity. In some cases, it has also proved fatal.

Physical activity is a positive and active strategy to help manage depression. On the other hand, people with ME suffer post-exertional malaise.

Some researchers have even suggested "exercise" as an ME diagnostic tool, for the simple reason that while people suffering from depression feel better afterwards, those with ME experience a worsening of symptoms and also relapses, depending on the intensity of the strain.

Regrettably, such inaccurate material about various illnesses perpetuates the lack of accurate and up-to-date knowledge particularly about ME and Fibromyalgia in Malta.

There is enough evidence to suggest that ME is probably triggered by a viral infection. However, since biomedical research into the causes and consequences of ME is acutely underfunded (mainly because of those who shamelessly maintain that ME is a psychiatric disorder even when there is evidence to indicate otherwise), a diagnostic test for ME that will eventually lead to a definitive cure seems more like a pipe dream than a possibility.

This article, unfortunately, besides being potentially very dangerous, ruins every bit of proper and accurate awareness that we sufferers painstakingly struggle to raise in our debilitating state of health. May I suggest that journalists follow a thorough line of investigation before embarking on writing about such a severe and highly misunderstood illness such as ME.

We do believe in miracles and pray for one every day, but whatever Ms Norton was suffering from, M.E was definitely not one of her conditions.

Rebecca Sultana
ME Sufferers Malta
Pieta

Editor's note:
The author of the article did carry out research on the topic for a previous article that appeared in Weekender (May 10), including interviews with other sufferers. Ms Norton was diagnosed as suffering from ME by a consultant at Dublin's Blackrock Clinic.]]><![CDATA[No 'miracle' involved in 'cure' because lady did not suffer from ME (2)]]>www.timesofmalta.com

by Jill Cooper

Well, I am astounded by the Weekender article. First, I would like to say that I am delighted to hear that Judith Ann Norton is so fit and well now.

I have a feeling that Ms Norton's doctors are saying that her return to good health is a "miracle" because they know full well that there has been a chain of misdiagnoses. I think Ms Norton has decided that gardening has assisted her recovery because she believes them.

It is hardly likely that gardening is going to cure two neurological conditions in one fell swoop. What a wonderful and miraculous cure it would be... for any illness going! It is almost like a dose of al fresco combined Cognitive Behavioural Therapy and Graded Exercise Therapy aimed at helping people with psychological illness to rid themselves of "abnormal illness beliefs".

Exercise is obviously important after a stroke so I can see that Ms Norton's recent active lifestyle would be a positive thing for this.

My guess is that the Parkinsons Disease and Myalgic Encephalomyelitis diagnoses were completely inaccurate.

People are forever discovering that their ME diagnosis was a mistake; they find out that they really have things like celiac disease, MS, hypothyroidism, B12 deficiency, inflammatory bowel disease and many other medical conditions.

ME is a pretty awful condition to have. So is Parkinsons Disease. Neither of them is going to disappear as the result of will power and horticultural activity.

Jill Cooper,
Rugby,
UK]]><![CDATA[Il-mara li l-marda taghha qaflitha d-dar]]>www.l-orizzont.com

minn Tess titkellem ma' Gaetano Micallef

Tess hi mara ta’ 49 sena li ghal dawn l-ahhar 19-il sena kienet qieghda tba­ti mill-M.E. (Myalgic Encephalomyelitis), kundizzjoni fejn il-persuna ssofri minn ghejja kbira tant li ma tkun tiflah taghmel xejn. Hi tirrakkonta lil GAE­TANO MICALLEF dak li ghaddiet u ghadha ghaddejja minnu.

(Fuq talba taghha l-identità zammejnieha mistura)

Kif u meta skoprejt li ghandek din il-kundizzjoni?

Il-marda qabditni fl-1990… ftit gimghat qabel ma ghalaqt it-30 sena. Ghall-ewwel ghedt “u iva, din l-ghej­ja se tghaddi” ghax hsibtha l-ghejja tas-soltu. Imma meta bdejt nara li flok tghaddili kienet qieghda tizdied u maghha kienu qeghdin jidhru sintomi ohrajn, mort ghand it-tabib tieghi imma ma kienx jaf x’kelli.

Baghatni ghand xi konsulenti tal-medicina u meta bdejt nispjegalhom is-sintomi, bdew ifittxu ghal mard iehor bhal-Lupus. Meta r-rizultati tat-testijiet gew normali qaluli li ma kien jidher li ghandi xejn. U kien hemm sahansitra certi tobba li bdew jghidu li kont qieghda nbati minn dipressjoni. Mentri jien kont inhoss li ma kellix dipressjoni. Ir-ragel emminni mill-ewwel ghall-fatt li kien jafni u kien jaf li dejjem sejra u m’ghandix kwiet.

Sa sentejn wara spiccajt bilkemm kont niflah nimxi u biex kont nimxi kont inkaxkar saqajja. Sadanittant kelli zewgt itfal zghar ta’ tlieta u erba’ snin li ridt niehu hsiebhom. Lit-tfal kont intellaghhom fis-sodda, ninzel biex inkompli xi haga u xhin nigi biex nerga’ nitla’ kont in­hares lejn it-tarag u nghid “kif se nitla’? Lanqas niflah nitilghu!” Spiccajt kont nitilghu fuq idejja u rkoptejja… qisni annimal.

Lanqas hawn kelma biex tiddeskrivi ezatt f’liema es­tre­mità hija din l-ghejja. Meta nqum filghodu nkun mhux hazin ghax inkun strihajt matul il-lejl. Imma wara certu hin tibda tah­kmek din l-ghejja.

Fl-1992 kont hazin hafna u mort ghand konsulent iehor li kien ghadu gej mill-Istati Uniti. Dahhalni l-is­ptar ghat-testijiet u meta ra r-rizultati tat-testijiet, li kie­nu bhal ta’ qabel, qalli “ha nghidlek Tess… rajt bhalha din l-Amerika… jghidulha ‘chronic fatigue syndrome’… u jiddispjacini ma nista’ nagh­millek xejn”. Hawn paj­jizi li jsejhulha M.E. waqt li ohrajn isejhulha ‘chronic fa­tigue syndrome’.

Jien lanqas biss kont naf li tezisti din il-kundizzjoni. Hi kundizzjoni li taffettwa miljuni ta’ nies li jbatu minnha u fil-fatt hiereg dokumentarju dwarha. Bhalma qabdet lili din il-kundizzjoni tista’ taqbad lil kulhadd. U mhux lil kulhadd tolqtu l-istess. M’ghamilt xejn biex qabditni. Meta t-tabib qalli li ma stajt naghmel xejn ghedt m’hemmx taghmel. Tal-familja hasbu li kont se mmut daqskemm kont hazin.

X’ghamilt wara li tak din l-ahbar?

Meta l-ghejja tilhaq certu livell jigu s-sintomi tal-‘brain fog’ fejn la tista’ tahseb, la tista’ tikkoncentra u lanqas tiflah titkellem. Kont nitkaxkar fuq is-sodda u nistrieh hemmhekk sakemm jghaddi l-hin u nerga’ nqum. U la rrid inkun nisma’ min jitkellem, la rrid in­kun nara dawl u kulma kont inkun irrid noqghod fil-kwiet sakemm inqum ghax b’familja ma tistax taghmel li trid.

Imbaghad bdejt nitghallem kif ghandi naghmel meta nkun ghajjiena. Spiccajt naqqast certi affarijiet bhall-hrug mal-hbieb biex nerfa’ l-energija ghax-xoghol u l-affarijiet li ma stajtx ma naghmilx.

Kont nahdem bhala infermiera imma wara ghaxar snin niggieled din il-kundizzjoni rrealizzajt li kien se jkol­li nieqaf mix-xoghol. Irrid jew ma rridx. Ix-xoghol spiccajt kont immur imma spiccat hallast prezz qares. Ghax tkissirt psikologikament. Haga li ma anticipajtx li se tigri.

Kont naghmel 12-il siegha xoghol u shabi kien jghidu­li kemm nidher ghajjiena. Imma tant kont nirrabja u ma ridtx nismaghha din il-kelma li fl-ahhar drawni u ma kienu jghiduli xejn. Imma l-pazjenti kienu jghiduli “kemm tidher ghajjiena ners! X’ghandek?”

Spiccat nimxi fis-sala nzomm mal-hajt u biex nonfoh il-pompa tal-pressjoni kont nghid bejni u bejn ruhi “kellu bzonn jghaddi xi hadd mill-istaff ha jonfohhieli”. Ghax ma kienx ikolli sahha nonfohha. Apparti l-ghejja jugghuk il-muskoli u l-gogi. Kelli nieqaf mix-xoghol u spiccajna niddependu fuq il-paga tar-ragel biss.

Kif ghedtlek wara ghaxar snin minn mindu skoprejt li kelli l-kundizzjoni, qabditni dipressjoni u mort ghand psikjatra. L-ghejja ta’ din il-marda mhix l-istess bhal dik tad-dipressjoni ghax meta jkollok dipressjoni xhin tqum filghodu mill-ewwel tkun ghajjiena mentri l-ghej­ja ta’ din il-marda tibda thossha wara certu hin ta’ xoghol.

Il-psikjatra miskina ghamlet minn kollox biex tipp­rova tghinni. Ilni 12-il sena mmur ghandha u ghadni naraha sal-lum. U nara psikologa wkoll. Veru mill-ahjar u t-tnejn jaccettaw li din il-marda hija fizika imma li minhabba fiha tkissirt psikologikament.

It-tobba li kienu jafu biha kienu jsostnu li gejja mill-mohh. U mhux jien biss iltqajt maghha din il-haga. Kwazi kull min huwa marid biha fid-dinja jghidlek li kienu jghidulu li gejja mill-mohh. Allura kienu jippro­vaw jikkuraw il-mohh. Mentri ftit ilu l-Ghaqda Dinjija tas-Sahha (WHO) ddefiniet­ha bhala marda fizika.

Ghal certu zmien kont nah­seb li jien biss kelli din il-marda. Sakemm darba dhalt fis-sit elettroniku loka­li tal-M.E. Malta u rrealizzajt li kien hemm min ghadda mill-istess esperjenzi tieghi. Hafna minnhom il-qraba lan­qas riedu jaccettawhom u kienu jghidulhom li minn mohhhom riedu jfiqu.

Haga bhal din tkompli tkiss­rek ghax int taf li dak li qeghdin jghidu mhux veru imma fl-istess hin ma tistax tikkonvincihom. Ghax ghadu ma jezisti l-ebda test li jindika li ghandek din il-marda. Din grat f’hafna mard iehor, per ezempju, il-‘multiple sclerosis’ fejn qabel ma vvintaw is-CET Scan kienu jahsbu li hija marda tal-mohh u mhux marda fizika.

Darba l-psikjatra staqsietni kemm kont ilni ma mmur ghand tabib. Ghedtilha li ma ridtx immur aktar ghand tobba meta ma setghu jaghmluli xejn. Baghtitni biex ner­ga’ niehu t-testijiet u t-tabiba li mort ghandha staq­sietni niftakarx jekk qabel imradtx b’din il-kundizzjoni kont imradtx b’xi haga ohra. Ghedtilha l-‘glandular fever’. Qaltli “tghidli xejn iktar … il-‘glandular fever’ gieli taghmel hekk”. U spjegatli kif fil-parti l-kbira tghaddi imma f’minoranza thalli effett li gieli jibqa’ ghal ftit zmien u f’certi kazi ghal dejjem.

Jigifieri m’hemmx xi haga partikolari li twassal ghal din il-kundizzjoni?

Semmewli l-‘viral meningitis’ u jien kelli wkoll. Imma ghalkemm it-tobba ghandhom certi suspetti xejn mhu cert. Issa sabu virus li jista’ jkun qieghed jikkawza l-kundizzjoni, imma ghadhom iridu jaghmlu hafna iktar stud­ji biex ikunu certi.

Fil-Kanada, l-Ingilterra u jidhirli New Zealand se jwaqq­fu lil dawk morda bl-M.E. milli jaghtu d-demm ghax qeghdin jahsbu li l-kundizzjoni jista’ jkun li gejja minn virus li jittiehed minn ‘body fluids’.

Fil-verità min hu marid bhali mhux se jmur jaghti d-demm… bil-kemm ikun jiflah imur jiehu d-demm hu. Meta jwassalni r-ragel l-isptar u mmur lura d-dar b’tal-linja nagh­mel jumejn bil-muskoli u l-gogi jugghuni.

Kura m’hemmx imma hemm xi haga li tista’ taghmel biex tghin sahhtek?

Ipprovajt trattamenti alternattivi bhal vitamini imma ghalxejn. Bhalissa l-unika haga li niehu huma l-pilloli tad-dipressjoni imma meta hadt il-vitamini qatt ma rajt differenza.

Ghamilt zmien twil ma nistax naccetta dan kollu. Fl-ahhar accettajtha anke jekk minn zmien ghal zmien inhoss certa rabja. Illum nikkontrollaha fis-sens li la naf il-limiti tieghi naf ukoll li certi affarijiet ma nistax naghmilhom. Allura nevitahom. Ghax naf li jekk se naghmilhom se tirkibni din l-ghejja u se jugghuni l-muskoli u l-ghadam.

Dan kollu kif affettwa lill-familja?

Ix-xiri li soltu kont naghmel spicca jaghmlu r-ragel u gieli ommi. Spiccajna lanqas bqajna mmorru nieklu barra. It-tfal, li llum ghandhom 22 u 23 sena, ipprovajt naghmel mill-ahjar biex ghall-inqas jitilghu bhal tfal ohrajn li ghandhom ommhom b’sahhitha. Imma darba wiehed minnhom, meta kellu 14-il sena, qalli “mami, taf li dejjem niftakrek marida”. Kont minghalija hbej­tha minnhom… imma fil-verità ma hbejt xejn.

Illum jekk ma nkunx niflah insajjar nghidilhom, forsi jgergru naqra imma jinzlu jsajru huma. Ma nhossnix daqshekk ‘guilty’ ghax ghandhom l-etajiet taghhom.

Il-kundizzjoni affettwat­li l-passatempi wkoll. Kont immur ‘scuba diving’ imma kelli nieqaf ghax ma stajtx nibqa’. Ovv­ja li trid taghti b’sa­qajk inkella tingarr mill-kurrent. Kont inpingi wkoll. Ghadni ftit imma ma nistax noqghod ghal hin twil bilqieghda.

Ftit ilu lir-ragel ghedtlu jixtrili laptop. Qalli “la ghan­­dna l-kompjuter”. Ghedt­­lu “ma tistax tifhem li ma nistax noqghod bil-qieghda ghal hin twil?”. Xtrahuli u ghalkemm ma nistax noqghod sighat twal minhabba li wara certu hin subghajja jibdew jghajjew infethet din­ja ohra ghalija.

Sibt hbieb li ghalkemm ma nafhomx u qatt ma rajt wicchom nis­ta’ nikkomunika maghhom. U daqskemm nifhmu lil xulxin ahna li ghaddejjin mill-istess marda hadd. Ghax jekk xi hadd qieghed jiccettja mieghek u jghidlek li ghejja u se jkollu jieqaf tifhmu mill-ewwel.

Ghandek idea kemm hawn f’Malta nies bhalek?

Tabib barra minn Malta ikkalkula li hawn madwar 800. Hemm minnhom mhumiex ‘diagnosed’. U donnu iktar taffettwa lin-nisa. Bhal-Lupus fejn minn kull ghax­ra, disgha huma nisa. L-eta­jiet ivarjaw u hemm tfal ja­hasra li la jistghu jmorru skola u lanqas jilaghbu. Hemm fa­milji wkoll fejn l-omm u t-tfal ghand­hom din il-kundizzjoni u ghalhekk hemm hafna jah­sbu li tista’ tittiehed.

Kif inhi gurnata tipika tieghek?

Illum ma nohorgx. Biex noh­rog veru ghall-bzonn. Ghax naf li xhin se mmur lura l-ghejja se tahkimni. Xejn, tista’ tghid li maqfula fid-dar qieghda.

Qabel kont niehu pjacir nara s-shab… ix-xita… il-bahar imqalleb. Dawn l-affarijiet semplici kienu jaghtuni pjacir. U kont nghid kemm hu sabih li tkun hajja. Darba minnhom kont fuq il-bejt u jien u diehla rajt qawsalla. U tghidx kemm bkejt. Ghax ftakart f’dak iz-zmien fejn quddiem xi haga bhal din kont nghid kemm hi sabiha l-hajja.

Illum il-gurnata ghajjejt niggieled. Ma’ min qieghda niggieled? Kieku tghid hemm kura! Hafna mill-persuni li ghandhom din il-kundizzjoni spiccaw ghamlu suwicid­ju. U nista’ nifhimhom. Ghax ghidli kif tispicca jekk ikollok xi 20 sena u ma tistax taghmel li trid?

Darba fis-sit elettroniku lokali tal-M.E. kien hemm tabib Ingliz li jikteb spiss. U darba kiteb xi haga u ghedtlu “kellu bzonn it-tobba kollha bhalek kemm tifhimna.” Kitibli lura u qalli “Tess, jien marid bl-istess marda.”

Naf b’kaz iehor ta’ tabiba u t-tifla taghha li t-tnejn morda. Qeghdin jiehdu l-‘anti-viral medication’ minn jeddhom ghax ma jridux jistennew biex jaraw jekk hux virus jew le. Biex tara fiex iggibek din il-kundizzjoni.

Ahna rridu nfiqu. Mhux il-pjacir taghna li nibqghu d-dar ma nifilhu naghmlu xejn u maqtughin mis-socjetà. Hemm min ghadu zghir u lanqas ghat-tfal ma jista’ jahseb. Ghax jghidu kif jien lanqas niflah nimxi se nie­hu hsieb tarbija?

Nista’ nghid li tlift kollox minhabba din il-marda u rrealizzajt li kont qieghda niggieled battalja mitlufa mill-bidu. L-unika haga li niehu ‘painkillers’ imma kemm iddum tiehu ‘painkillers’? L-ahhar darba li ghamluli t-test tal-fwied, il-psikjatra mill-ewwel harset lejja u qaltli “jaqaw qieghda tibla’ xi kocc ‘painkillers’”? Ghedtilha “x’taghmel?”. Kemm se ddum tissaportih l-ugigh?”

Biex tara l-artiklu, mur f'dan is-sit -
http://www.l-orizzont.com/news.asp?newsitemid=64585]]><![CDATA[No 'miracle' involved in 'cure' because lady did not suffer from ME (1)]]>www.timesofmalta.com

by Dr. John H. Greensmith

Judith Ann Norton (Lady Living A Miracle, Weekender, September 20) may believe she has found a miracle solution to her presumed diagnoses of both ME (Myalgic Encephalomyelitis) and Parkinson's Disease at the end of the rainbow, in the land of the leprechauns, in gardening, but what seems most likely is that she had genuine symptoms of chronic fatigue and tremors, as a result of the stroke she had, and from which she has recovered with time, rest and her body's restored immune system, thus allowing her to enjoy her hobby.

It wasn't a miracle or a fairy tale at all. She probably didn't have either ME or Parkinson's Disease and sufferers of these two life-long illnesses should not be led up the garden path to believe they will be cured by horticulture.

Dr. John H. Greensmith,
ME Free For All. Org,
Bristol,
UK]]><![CDATA[ME myself & I]]>
Pink - January 2007

The mystery behind ME, or Chronic Fatigue Syndrome, revealed... Here's all you ever wanted to know about this misunderstood, but crippling condition.

Among the memorabilia from my former schooldays, I came across an old photograph of a friend, who was the epitome of energy and mischief back then. Nostalgia and a plethora of funny memories persuaded me to give her a ring...

As I sat comfortably in her dimly lit living room, with closed curtains, I listened to Elaine’s* story.

A year after graduating from University as a teacher, the 29-year-old started to feel unusually tired, and complained of blurred vision and headaches. Swollen glands had led her doctor to check for glandular fever, which resulted positive. 

However, around seven months later, the symptoms worsened. Although the eye specialist found nothing wrong with her eyesight, blurred and double vision made her feel dizzy and she frequently lost her balance.

She developed an obstinate and exhausting, low grade fever. Sleep was almost impossible, and the minute she shut her eyelids, nightmares followed, while a terrible bruised feeling and irritation ensued on waking up.

Her muscles and joints would ache and feel stiff, while severe indigestion and increased sensitivity to many foods, particularly wheat, caused her to lose weight. To exclude the possibility of being a coeliac, Elaine underwent an endoscopy and a colonoscopy - two arduous procedures that aggravated her weakness. 

She also did an MRI (on the recommendation of a neuro-surgeon) because of the frequency of migraine attacks and the heightened sensitivity to light and noise,  which was most unlike her since she loved being out in the sun and listening and singing to loud music.

Elaine also noticed that people started to tire her out, but the MRI results did not reveal any problems. She then decided to go to a specialist to see why her condition had deteriorated, but he was left mystified by her complex symptoms that were medically unexplainable.

Since all her blood tests were fine, Elaine was advised to stop focusing on her symptoms and get on with her life. The specialist seemed to think that it had something to do with her state of mind and that, eventually, she would feel better. It encouraged her to go back to work and start the next scholastic year, but this is when her life started to spiral out of control.

Due to physical and mental collapse, she was persuaded to leave school after the first term.  “I felt as if life had been sucked out of me, but there was no evidence to back how I was feeling. At times, I thought I was going mad.  I experienced frequent panic attacks and was often breathless.”

Elaine explains that having a sceptic for a mother, who is not easily convinced, has its advantages: Following the lead of Elaine’s loss of co-ordination, light-headedness and impaired vision, her mother booked an appointment with a neurologist.

After hearing Elaine’s story, viewing her countless blood tests, X-rays, internal examinations and MRI results, and a thorough examination, the neurologist immediately suspected that she was suffering from ME (myalgic encephalomyelitis) or CFS (Chronic Fatigue Syndrome), and asked her to use the Internet to check if her symptoms were recorded on an ME patient’s list of complaints. 

Suddenly everything started to make sense and the relief was priceless.  A visit to a physician acquainted with the illness confirmed the neurologist’s diagnosis. Elaine felt very relieved after a long period of worry and fear about what might be wrong. But most importantly , after four years, she could finally put a name to what she was feeling and confirm that it was not “all in the mind” .

The unfortunate thing is that, according to studies, those diagnosed at an early stage and who undergo a period of enforced rest have the best prognosis.

Thanks to both financial help and constant care from her family and a sensitive husband, Elaine was able to follow the physician’s advice and change her lifestyle. Self-paced exercise, religiously and each day, together with plenty of rest, were the order of the day.

After eight months, she felt better and took up a part-time job in another school. But she just about managed to get through a year of teaching for 90 minutes a day and rested for the remainder.

Then, towards the end of May, her health began to deteriorate again. Three months of rest followed and enabled her to attempt another year of work. The next was tougher and, unfortunately, due to an overtaxed and burdened immune system, Elaine contracted cytomegalovirus, which affected both her liver and pancreas.

ME sufferers are more susceptible to viral infections, and due to the nature of the illness, recovery takes time. In turn, the virus was a major stressor for ME and a relapse has faithfully followed.

Elaine had to quit work once again and spends most of her time indoors, ticking away the days in her diary like a prisoner in a cell.

Although ME/CFS has been documented in medical literature from 1934, and the UK Government has now recognised its serious nature, most Maltese have never heard of it.

Elaine's battle with this crippling condition has revealed that it’s not only the ordinary man in the street who has been left in the dark, but also local doctors, who seem to be at a loss when ME sufferers complain about its various symptoms, having no laboratory evidence to back them.

Diagnosis of the condition itself is a huge feat. Being faced with a chronic health problem could be traumatic for both the afflicted and their families. While Elaine lives like a recluse, anxiously hoping to get better, her family helplessly battle their way through worry and concern.

The unpredictability of the condition is one of the most irritating factors a sufferer has to come to terms with and accept.  “Sometimes, I wake up feeling better and can make a short trip to the grocer on my own, or meet a friend for a coffee, or even go out for a couple of hours in the evening; other times, cooking is a major accomplishment. 

At times, I wake up feeling really exhausted and bruised - as if I were hit by a bus. On these days, even walking to the bathroom takes its toll on me.  Many times, I feel as if I'm locked in a cage, watching my life pass me by!

Helpless anger is inevitable since I feel I cannot enjoy my youth. Then, I feel guilty for feeling angry because I often take it out on others and I know it’s not their fault. It’s like I got old before my time, needing constant help from others, but not wanting it at the same time!”

Most M.E sufferers tend to have good times and bad times, within the confines of their condition. When they experience a high in their quality of life, they are likely to do as much as possible, or fit in everything they had once set their mind to do. It’s like when Lent is over and children gorge on Easter eggs on Easter Sunday.  But gorging on one’s supply of energy always results in a relapse of some sort.  Unlike in the case of a healthy person, sleep does nothing for the sufferer’s fading energy. 

In extreme cases, some sufferers are bedridden for a while, requiring a wheelchair to get around and a carer to provide support. The majority hate to feel so dependent on others and it takes some time for them to accept their situation.

“It’s heartbreaking to have to let go of your plans because relapse comes knocking at your door” says Elaine.  She was an active, driven and ambitious person before being struck by ME, so it’s understandable that she constantly finds herself in denial when faced with the reality that she has to put off doing things indefinitely.
“Knowing when you are overdoing it and drawing a line, is also difficult”. 

At present, Elaine is practically housebound but she is confident that she will improve. Another distressing aspect an ME sufferer faces is loneliness.  It is easy for them to lose their network of friends and the possibility of making new ones.  “One day, you’re yourself, enjoying nights out with your mates and planning to go places, or do things together; suddenly, you start to withdraw from their company,” Elaine relates.

Due to the various symptoms, terrible exhaustion and overall discomfort, it’s not the first time she has had to postpone meeting a friend, or not been able to turn up at a party, or an appointment.  Socialising is a luxury ME sufferers can seldom afford!

Due to the lack of awareness about ME, Elaine finds it frustrating to have to continually explain herself.  Even if some people understand and believe she's got a real physical illness, Elaine feels they may think there is a psychiatric component to it.  Due to fear of being misunderstood, she feels the less she explains her situation, the better off she is. 

However, Elaine knows that since she is either unemployed, or a part-time worker, it’s embarrassing not to have a ‘suitable’ explanation for being out of work.  She hates to think that people might consider her to be a layabout.  “You have to have ME to even begin to understand and appreciate the constant struggle sufferers face on a daily basis, ” she stresses.

By time, however, she has learnt to work around her condition.  If she knows she has a night out, she rests throughout the day.  But she often finds she still has to pay afterwards for exerting herself.  “The sad thing is that the few times relatives and friends see me, I am at my best, so it’s easy for them to get the wrong idea and think that I am well, or have recovered, or even worse, think that I have been pretending to be ill.” “Sometimes, I can participate in a heated argument, but other times just listening to someone talk drains the energy out of me.”

Unfortunately, a person who suffers from ME often experiences difficulty concentrating.  Memory and thinking can turn foggy.  “Last week, I went to deposit some money at the bank but when I came to sign the receipt, I forgot my signature.  It was so embarrassing to have to pull out my ID card to recall how I usually sign my name.”

Some ME sufferers often find it difficult to put names to things, or remember how to pronounce certain words, and get extremely tired when trying to explain, or understand concepts.

ME varies from person to person and ranges from mild to severe.  Those who are mildly affected manage to juggle part-time work and rest.  But people with severe ME are bedridden and need 24hour care.  Elaine feels she is somewhere in between these two extremes.

However, since ME is an erratic condition of highs and lows, improvements and relapses, sufferers often get a taste of the various levels.

In the UK, a range of incapacity, disability and income support benefits are available for those ME sufferers who are unable to work and look after themselves.  But Malta's welfare state does not cater for them.  Elaine describes how difficult it must be for those who are alone, don't have financial help, or care from anyone in their community.

The majority of ME sufferers enjoyed an active lifestyle before falling ill and would like nothing more than to return to it.  If they are going through a terribly bad phase, or a relapse, they need an indeterminate time to recover, meaning they are are compelled to leave their job. “I find it demoralising and unfair that employment rights for people with ME do not exist.  It feels even worse when an ignorant and insensitive employer makes fun of your fatigue saying: ‘Then I must have ME too, because I am also constantly tired!’ 

Most sufferers who don’t have severe ME and are unemployed due to a lack of suitable employment, lead very unfulfilling lives.  It is an unjust situation that is not only harmful to the individual struck by ME, but is also a great loss to the work force and society in general,” Elaine explains. 

These days, the tendency is to judge people by how much they do and achieve, rather than for who they are, so life must be particularly difficult for people with ME.

However, despite all this, Elaine also shares a less negative and deeper experience through her condition, and reveals that it is not all doom and gloom!  “It’s not the first time - and will not be the last time - that I find myself aggressively trying to fight my illness away, desperately wanting my normal life back and envying others who are well.” but, accepting her life as a sick person for an undetermined length of time has opened new doors for her.

 “Once I stopped grieving for the things I couldn’t do, I could start focusing more on the things I could do, and also got some insight into what my true aspirations are. 

Today, life is so hectic and demanding that most people never have the chance to listen to their inner selves and discover what they really want out of life.  They end up choosing a career they don’t really like or a path they later acknowledge was a huge mistake.”

Developing and maintaining a positive perspective in the face of adversity helps ME sufferers cope better with their situation.  Cognitive behavioural therapy can help individuals adjust to some of the consequences of being unwell and allow them to pace their mental and physical activity better.  However, this is only beneficial if the therapist has a sound knowledge of ME and is appropriately trained.

Various support groups and associations exist across the UK to provide a network for sufferers, their families, carers and friends.  Unfortunately, however, there are no such groups in Malta, leaving ME sufferers to battle it alone. 

Although Elaine is not in a position to start an ME association at present, she is trying to set up an email support group, with the aim of “sharing experiences and sharing what helps us”.

If you are an ME sufferer and wish to find an ME friend, send an email to friend@mesufferersmalta.org , or for some basic information regarding the widely misunderstood illness, email info@mesufferersmalta.org , or log on to www.afme.org.uk and www.investinme.org .

* Names have been changed to protect the person's identity.

ME was considered by sufferers to be a disease that,  despite ruining lives, was not fatal.  However, on June 13, 2005, it was for the first time recorded in the U.K as the cause of death of 32-year-old Sophia Mirza. 

It was confirmed that she died “from acute aneuric renal failure, triggered by dehydration as a result of CFS”. Sufferers in the UK are now even more worried and concerned that their voice is not being adequately heard, or even utterly ignored.

ME/CFS has been formally classified by the World Health Organisation as a neurological disorder in the International Classification of Diseases since 1969. Other complications affecting cardiac and skeletal muscle, the liver and endocrine and lymphoid tissues have also been recognised. 

However, it is only a year after the demise of Sophia that there has been an urgent plea for biomedical research into ME.

Sophia's ME was ignored and her condition was treated as a psychiatric case.  As ME specialist Jonathan Kerr of St.George’s University of London states: “People have been reluctant to subscribe to the biological side because of the psychiatric lobby.” 

And up to now, that is where government funds have been addressed, with detrimental consequences, especially for severe ME sufferers, who were not given proper treatment and whose condition has worsened, making chances of recovery impossible.

SYMPTOMS
Unnatural and inexplicable fatigue and severe malaise [not relieved by rest] are not the only symptoms of ME - they are common ailments. 

But there is an accompanying list that is unique to every individual sufferer.  Again, an ME sufferer’s symptoms may change, or fluctuate during the course of their illness and not all people with ME suffer from all the symptoms.

The other main ones include:
Muscle, nerve and joint pain and/or stiffness
Disturbed sleep, insomnia, nightmares
Glandular swellings
Migraines
Poor temperature control
Poor circulation
Low-grade fever
Increased sensitivity to bright light, noise and odours Increased sensitivity to medication
Intolerance to certain foods
Indigestion
Nausea
Diarrhoea, or constipation
Loss of short-term memory and concentration
Blurred vision and dizziness
Light-headedness and difficulties with balance Moodiness, or depression [brought on by the condition’s difficult recovery]
Panic attacks - breathlessness, palpitations

HOW IS ‘ME’ DIAGNOSED?
At present, there are no examination findings that can confirm a person has ME. 
Unfortunately, in most scenarios, a person would have had to be suffering from a sufficient range of symptoms for at least 6 months before ME is even considered. 

This is particularly unhelpful since rest is so critical in the early phase of the illness. After a process of elimination that rules out any other conditions, including a substantial number of bloodtests and any other tests the doctor deems necessary, a diagnosis is finally made.

WHO IS MOST PRONE?
It is estimated that there are up to 240,000 individuals with ME in the UK.  ME can affect people of all ages and from all social classes, but more women than men have been reported to be suffering from it. 

ME is not a contagious illness and some studies have suggested that it could also be a matter of genetics.

The most common triggers are:
Viral infections like glandular fever and viral meningitis Physical injury or trauma like accidents or operations Bereavement, or other emotional/ stressful circumstances

PROGNOSIS
It has presently been estimated that 20% of ME sufferers in the UK regain full health within two years, but around 60% never regain their previous level of health and up to 20% become permanently disabled.  Early diagnosis and appropriate advice on managing the illness is always promising.

TREATMENT
There is no single treatment that stands out as the best for ME, however, some physical ME symptoms can be relieved in isolation. 

Painkillers ease pain and a small dose of a tricyclic-type drug is often prescribed for problems with sleep and secondary depression.  However, ME sufferers are extremely sensitive to side effects, so medication could be counter productive.

Sufferers who develop intolerance to certain foods can be put on restricted diets with the help of a professional nutritionist, who can ensure that the body’s nutritional needs are met.

Some individual sufferers have felt an increased sense of well-being after trying unorthodox and complementary therapies like aromatherapy, acupuncture and homoeopathic remedies. 

However, there is still limited research into their use in ME, so it may be difficult to know if they are worth trying.

EXERCISE
Exercise within the framework of ME is a controversial and delicate issue.  For those who don’t have severe ME, some kind of graded aerobic activity [like walking] is beneficial and vital. 

Some evidence suggests that prolonged inactivity can cause muscle wasting, weakness and further malaise. Exercise within strictly narrow limits, also helps to boost the individual’s confidence and enhances moods. 

Recognising one’s limits and not being over-ambitious is very important since straining always leads to some form of relapse.  Once ME sufferers learn to trust their intuition and the logic of the illness, this becomes easier to achieve.

Complete inactivity and rest is advisable for people in the early stages of ME, as well as severe sufferers.  In fact, the latter have felt symptoms - particularly muscle pain and over-all malaise - worsen considerably after graded exercise, and few leg movements in bed are more than they can do.

It is also necessary that people going through a relapse lessen the length and intensity of their chosen activity.  [Elaine, for example, has found light yoga particularly helpful for muscle spasms and stiffness.]  

AMENDMENTS  to ‘ME Myself and I’

The Most Controversial Aspects of ME

Graded Exercise Therapy (GET)
Under the section called 'Exercise', I wrote "For those who don't have severe ME, some kind of graded aerobic activity [like walking] is beneficial and vital. Some evidence suggests that prolonged inactivity can cause muscle wasting, weakness and further malaise”.

The evidence that “prolonged inactivity can cause muscle wasting, weakness and further malaise” is being questioned.

Again, nowadays “aerobic" activity is not advisable or recommended, unless the ME sufferer is very mildly affected or recovering; and this must be carried out with caution.  

Cognitive Behavioural Therapy (CBT)
My article also states that “Cognitive behavioural therapy can help individuals adjust to some of the consequences of being unwell and allow them to pace their mental and physical activity better.  However, this is only beneficial if the therapist has a sound knowledge of ME and is appropriately trained”.

Feelings about CBT run strong and deep and there is not enough research into treatment for ME sufferers. There is an ongoing debate between representatives from national ME/CFS charities regarding the advantages of CBT, but the majority tend to doubt its validity and benefits.

The Canadian Consensus Document (2003), which is the most widely accepted document regarding ME, (http:// www.mefmaction.net/documents/me_overview.pdf ) pg.10  explains that CBT is ineffective and indeed could be harmful, if it is seen or considered as a treatment that will restore an ME sufferer to health.

ME is not ‘all in the mind’ but a real, serious physical illness that will not and cannot be cured by a positive attitude to life. ME sufferers however, could benefit from learning coping skills (which some medical practitioners confusingly refer to as CBT treatment) that could help them deal with the life-changing effects of a chronic illness.

The Canadian guidelines suggest that doctors use the term ‘Self-Help Strategies’ as an alternative to CBT, to create a distinction between the two attitudes towards ME; and thus brush off the latter term’s negative association - implying that ME is a psychiatric disorder.

Prognosis of ME
Another point was also brought to my attention, regarding the ‘prognoses’ of ME.

In fact, the more recent and accepted figure of those ME sufferers who recover to full health lies more between 6 and 12%, rather than 20%. Many do improve but not equivalent to full pre-illness levels.

References
Colby, J. (1996) ME –The New Plague Peterborough: Dome Vision
Rutherford, D. (2003) Chronic Fatigue Great Britain: Hodder & Stoughton
URL: http://www.25megroup.org
URL: http://www.afme.org.uk
URL: http://www.investinme.org
URL: http://www.newscientist.com]]><![CDATA[Feedback to 'System Failure' article]]>www.timesofmalta.com

ME treatment

by Dr John H Greensmith

As I read through System Failure (Weekender, May 12), a feature about the dreadfully debilitating condition ME (Myalgic Encephalomyelitis), illustrated by the case history of Maria, a Maltese woman, housebound with severe ME, I was finding nothing to change my first impression that this is, unreservedly, the best article I have ever read anywhere in the world and it should be compulsory reading, not only for the whole ME community of ME sufferers, their carers, doctors and researchers but also the public, as the finest source of awareness anyone could have.

It has the greatest comprehensive coverage of every aspect of ME in one place I have ever seen, including symptoms; possible triggers of the illness; the devastating effect upon life, career and education; the social isolation; the disbelief and derision; the lack of public awareness and the alarming ignorance of some doctors. It also has a level scientific detail one would expect in a specialist journal, rather than a newspaper for general readership.

But - here comes the reservation - I am concerned about ME sufferers having Cognitive Behaviour Therapy (CBT) or Graded Exercise Treatment (GET) as, indeed, they are recommended to do by the government's health advisers here in the UK.

While CBT may help some patients who have a negative attitude towards a chronic fatigue illness, or who have psychological concomitants, or a psychiatric history, there is no evidence that it has a lasting beneficial effect upon ME sufferers, who do not have fatigue or these additional problems.

There is both anecdotal and research evidence that GET leaves a majority (84 per cent) feeling worse after it and may do some patients lasting harm. It is widely agreed that some form of gentle pacing of energy, that is, doing as much as you can without overdoing it and then resting, is best, though you do have to find your own level and it does take some discipline.

Since no treatment is better than one that does you no good, or one that may do lasting harm, ME Free For All.org, together with other ME support organisations, calls for a suspension of these management techniques, pending further research.

Meanwhile, serious biomedical research aimed at finding the physical cause of ME which should, in turn, suggest appropriate treatments towards cure, is being starved of government funding and having to rely on charity to survive.

Nevertheless, despite this admittedly large stumbling block, The Times has carried a world leader that is a credit to the fledgling ME Sufferers of Malta group ( www.mesufferersmalta.org ), whose great work, in such a short period of time, is deservedly receiving global attention.

We wish them continued success and hope they garner the support and understanding of medical specialists and welfare services in Malta that they desperately need.

Dr John H Greensmith,
Bristol, UK.
ME Free For All.org]]>