Has science found the cause of ME?
Breakthrough offers hope to millions of sufferers around the world
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Independent Minds
Scientists say they have made a dramatic breakthrough in understanding the cause of chronic fatigue syndrome – a debilitating condition affecting 250,000 people in Britain which for decades has defied a rational medical explanation.
The researchers have discovered a strong link between chronic fatigue syndrome, which is sometimes known as ME or myalgic encephalomyelitis, and an obscure retrovirus related to a group of viruses found to infect mice.
Although the published data falls short of proving a definitive cause-and-effect, one of the scientists behind the study said last night that she was confident that further unpublished data she had gathered over the past few weeks implicated the retrovirus as an important and perhaps sole cause of the condition.
Chronic fatigue syndrome has blighted the lives of an estimated 17 million people worldwide because its symptoms, long-term tiredness and aching limbs, do not go away with sleep or rest. Famous sufferers have included the author and yachtswoman Clare Francis, the film director Lord Puttnam, the pop singer Suzanne Shaw and the Labour politician Yvette Cooper, who has made a full recovery.
The condition initially generated much controversy in the 1980s, when it was known as "yuppie flu", because some medical authorities even doubted whether it was a genuine physical illness. In the absence of a proven cause, many scientists have questioned whether there could ever be one reason behind so many different symptoms, so the latest research showing a strong link to a single virus has generated intense excitement among experts.
The study, published in the journal Science, shows that the virus, called murine leukaemia virus-related virus (XMRV), was found in 68 of 101 patients from around the US with chronic fatigue syndrome. This compared with just eight of 218 healthy "controls" drawn at random from the same parts of the US, the scientists said.
But the senior author of the study, Judy Mikovits, director of research at the Whittemore Peterson Institute in Reno, Nevada, said further blood tests have revealed that more than 95 per cent of patients with the syndrome have antibodies to the virus – indicating they have been infected with XMRV, which can lie dormant within a patient's DNA. "With those numbers, I would say, yes we've found the cause of chronic fatigue syndrome. We also have data showing that the virus attacks the human immune system," said Dr Mikovits. She is testing a further 500 blood samples gathered from chronic fatigue patients diagnosed in London. "The same percentages are holding up," she said.
If the findings are replicated by other groups and the XMRV virus is accepted as a cause of chronic fatigue syndrome then it could be possible to treat patients with antivirals, just like treating HIV, or to develop a vaccine against the virus to protect people from developing the condition, said Dr Mikovits.
"We now have compelling proof that a retrovirus named XMRV is present in more than two-thirds of patient samples with chronic fatigue syndrome. This finding could be a major step in the discovery of vital treatment options for millions of patients," she said.
The genetic structure of the XMRV virus indicates that it has evolved from a similar virus found in wild field mice. Dr Mikovits suggested it could have jumped the "species barrier" from mouse to man like many other human viruses, such as HIV, another retrovirus, which is thought to have infected humans from monkeys or apes.
XMRV was originally found in men suffering from prostate cancer and it was this discovery that led Dr Mikovits and her collaborators at the US National Institutes of Health to test blood samples stored from patients with chronic fatigue syndrome. "The discovery of XMRV in two major diseases, prostate cancer and now chronic fatigue syndrome, is very exciting. If cause-and-effect is established, there would be a new opportunity for prevention and treatment of these diseases," said Professor Robert Silverman, of the Cleveland Clinic in Ohio, who worked on the fatigue syndrome study.
However, other researchers emphasised that the numbers published so far are too small to conclude anything about the cause of chronic fatigue syndrome. "It's spectacular but needs replication. And I hope that no one is thinking of prescribing anti-retrovirals on the basis of this," said Simon Wessely, professor of psychological medicine at King's College London. "It's very preliminary and there no evidence to say this is relevant to the vast majority of people in the UK with the condition."
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Comments
Hope CFS days are numbered.
Mina
Up to now, it has approved no grants for any biological research into the condition. But has given millions to studies led by psychiatrists and psychologists who think all patients need to do is push themselves a bit more. These same psychiatrists and psychologists then ignore the numerous surveys that found that many patients have been made worse by pushing themselves. If their treatments were drugs, they'd have been taken off the market by now but unfortunately patients with ME or CFS who are told to exercise and then get worse don't have the safeguards that people who are prescribed drugs have.
Hopefully this will bring a sea change in research in the field in the UK and now more biological research will occur.
Didn't he read the news - 500 blood samples from London are being tested and the figures are holding up.
We need the help of Virologists and Immunologists to test and treat people with ME and CFS in the UK.
No more fobbing off.
I have spent my entire adult life with this disease and I would like to have some illness free years before I eventually die.
The UK government and medical research council squandered millions chasing a psychological cause.
We would like to money back, and to spend it on treatment now.
Before this research, there was no evidence of CFS being a biological illness - there was speculation and anecdote, but no actual evidence. Even these small studies simply suggests that there may be, possibly, some sort of link between CFS and murine leukaemia virus-related virus - but you'll notice that 33 of 101 patients with CFS did not have the virus.
So saying "interesting, lets study this some more before changing our practices" is actually the best thing at the moment.
robert11460@aol.co.uk
Anyways, I know as bad as things are in the U.S in regard to ME, the U.K seems even worse. That Wessley guys is a total moron.
This disease has so many consistent biological abnormalities across the ME/CFS population and they are continually being ignored.
Will these people ever listen!!!!
God Bless
Mike
I have had CFS for 7 years this week and it has completely consumed my life. Many treatments commonly used to treat CFS just have not worked for me at all.
CBT made my condition much worse. Paced exercise is a real no no for me. And rest makes no difference at all.
Money put into the research has been very limited, mostly due to the political connections of Wessley, his partner and the labour party. I know. I worked in there, for my sins.
Thank you for your article, I look forward to reading more in the future, and hopefully the discovery of a treatment to help all of us manage or stop this terrible deliberating illness.
Craig
I have lost 15 years to CFS and exhortations that CBT and graded exercise (which I have done in spades) have on more than one occassion pushed me to the edge. Should this work prove a biological cause I vote Simon is given a good dose of CFS for a year or so and then a cure.
What a pathetic scam to let millions suffer on a pretense.
ME is one of a group of diseases given the "all in the mind" label. Another lesser known one, yet fast developing into a real problem, is nicknamed Morgellons otherwise known as a fibre disease. Unfortunate victims suffer small coloured fibres emerging from their bodies and intense itching and burning sensations - to name just a few. A constant in all cases seems to be black dots emerging on the surface from deep in the skin and development of co-infections, notably Lyme or Borrelia. Lyme is traditionally associated with bites from ticks found in woodland. However a great many "Morgellons" sufferers know they have not been infected from a tick bite. For this reason (there being no evidence - no trademark red mark) many doctors dismiss the disease as being imagined - despite being presented with a huge number of very real symptoms and physical evidence. The result is that the Borrelia infection is left untreated and patients go on to suffer all kinds of complications including heart palpitations, problems walking, deteriorating eyesight etc. As for the Morgellons co-infection forget it.
There are many hundreds of thousands of sufferers around the world including a famous pop singer and American baseball player. Their plight is very real yet dismissed by professors like Wessley. Whether there is viral link as in the case of ME is unknown - there might be. There is certainly some kind of bacterial and fungal association. As for possible vectors, mice (mentioned in this ME article) and possibly fleas or mites seem a viable source of infection. Whether there are any common links between all these modern day syndromes including Gulf War Syndrome is unknown but what is for sure is that doctors are being wrongly trained to dismiss such symptoms as psychological when physical and clinical evidence shows otherwise. And as a result researchers are being denied sufficient funding or in the case of Morgellons none at all.
Sandra
Maybe if the rat race we exist in slowed down then chronic fatigue syndrome would not need to exist.
It is virtually always the same personality types who suffer with it and it tends to go hand in hand with irritable bowel syndrome, depression, fybromyalgia and other psychosomatic conditions.
This doesn't make it any easier for people to live with but accepting that the 'cure' is likely to be CBT and SSRI/psychological treatment is the first step. Stop chasing rainbows!
Also, fibromyalgia is a rheumatic condition, I'm not sure why you think that should be included.
And I've tried SSRIs and CBT for my ME. It hasn't helped except to manage the depressed feeling that comes from being in my mid-twenties and effectively housebound (I was not depressed at the onset of this illness). I'm curious what "personality type" you think I must have. My specialist was telling me that most people he's come across with the illness have been otherwise healthy, extremely outgoing and energetic individuals who live life to the full until this disease stops them.
In all this time I have become convinced this a sub-clinical virus. People who live with ME suffers can see what is happening. So today's news is simply overwhelmingly brilliant.
My wife has had all the CBT and other therapies. Some helped, some made it worse, most did nothing.
Today however I don't want to criticise the medical profession today for what were no doubt their best intentions but nonetheless failures of the past. Medicine doesn't always get it right but by god, it looks and I pray they have got it right now.
Lets not make perfect the enemy of good today. Lets be optimistic. Lets be happy!!
As all sufferers and their loved ones know, a cure for this disease will truly be life changing for many of us. Bring it on, as fast as we can, and lets start looking forwards.
many people whose lives have been blighted may be cured. yet you foretell costs and side effects. Is there a vaccine for your condition?
Why do scientist blab before they have definitive results.
It makes me cringe when I see newspaper headlines Like 'Cure found for Common Cold' but nothing will be available for at least 10 years, why raise peoples hopes so cruelly.
Holistic and alternative treatments have been found to be good at relieving the symptoms I should know I use them and is some cases may have got rid of ME.
I think this is a virus that was released and tested on us without us knowing, and there have been too many questions asked, I believe it could be another side effect of over use of antibiotics
Personally I would take this news with a very large pinch of salt.
A healthy diet, gentle exercise and patience is the best cure for this malady
Hopefully this will lead to cures being found for some of our most resilient diseases.
I was just another of those cynics who used to believe that it was all in the mind; I too commented loftily how strange it was that ME never seemed to effect anybody outside the monied middle class or people from the Third World ' because they were all too busy having to work for a living'. Well actually it does affect them, it's just not recognised because we aren't listened too properly.
My partner's son developed CSF 12 months ago and we have had to watch a bright, intelligent, gregarious and sports mad teenager turn into a shambling shadow of his former self. His dream of playing Centre for England was enough to drive him hard - so his inability to walk some days let alone run with a rugby ball is not in his head.
Enough of these comments that it's all about diet or positivity - sufferers do not need to eat more greens or get a grip. They are suffering from a biological condition that requires serious investment.
Look at who Wessley’s partner is and what she did for a living, who she worked for.
My understanding was that this all happened from a concern that the Phsyc community would lose out on funding/money should the labour party agree that the condition was classed as a physical and mental illness.
I know the Government were not happy when the world health organisation classified CFS as both.
I also know that the conclusions of the original CFS working group working for guidelines for NICE, were ignored so as to include both paced exercise and CBT. Much to the disgust of a number of the group. This ultimately led to a number of the group resigning.
It is a political mess.
My fiancée has had ME for 8 years now and it is such a horrible illness and it affects all aspects of both of our lives. However his experience motivated me to conduct some much needed research into the subject and I am now working on my PhD looking at the relationship ME/CFS, employment and Identity.
Please visit my website if you are interested in learning more about my research- I am interested in hearing from people both with ME/CFS and people that have RECOVERED from it. The website address is http://www.cfs-me-study.org.uk and the email link is the @ sign on the top right hand corner.
Many thanks
Kate Butlin
I worked in the Civil Service for both Jacqui Smith and Alan Johnson.
Once I became disabled with CFS I was horrible bullied by the Civil Service for my very poor health.
It was a truly terrible time. Trying to cope with a life altering disability and an employer who did not care.
both have been dismissed as being the causes of ME (Chronic Fatigue)
My guess is that the same will eventually be said about this new Virus (murine leukaemia virus-related virus (XMRV)
I have a degree in Psychology and worked for a teaching qualification as a mature student. I had a lot of enthusiasm and a love of life until this cruel affliction took over my life and turned it upside down. I can no longer do the job I loved and we have had to cancel holidays at the last minute and many social engagements too. I can no longer swim, cycle, go walking or go to the gym - activities I enjoyed regularly before.
I have learnt to live with this condition, keep quiet about it and don't feel sorry for myself. A lot of people endure a lot worse. The cruellest thing about this illness is enduring the silly comments of people like yourself. And, by the way, your comment isn't even original. All of us with ME will have come across it before. I wouldn't wish this illness on my worst enemy but I have often wished people like yourself could experience it for just 24 hours. Then, just maybe, you would keep your mouth shut until you have put your brain into gear.
This finding offers hope to the millions of people who suffer from this illness that they will be free from it one day, that they won't have to suffer in silence, locked away from the world by extreme fatigue. It also brings hope that they may finally get the change in public opinion that is due. I hope this finding will begin to change the way the public sees an illness that, until now, had no known root cause and was difficult to sympathise with. I look forward to the next discovery with much anticipation.
For those very few posters who have suggested that CBT is an adequate treatment for this illness: I had the misfortune of being referred to the Chronic Fatigue Unit at King's College (where SW is resident) and approached CBT with an open mind. While it helped me to some extent come to terms with chronic illness, it also made me feel like a failure, and incredibly frustrated, when of course it did absolutely nothing for my physical symptoms. When I think about it now, I'm amazed that I ever thought it would help. The disappointment at discovering that CBT and GET was the best the NHS had to offer was certainly not worth the very small psychological benefits of the treatment.
In the States and other countries there are already some drugs that have been shown to help, if not cure this awful disease. It is time that the treatment fitted the illness - CFS/ME is a neurological illness, and it is ridiculous to expect that a 12 week course of CBT therapy can improve the actual conditions.
Finally, of all the many people I now know suffering with this illness, I would say that there is not one among them who could be called lazy. We have to cope with the spectre of Simon Wessley's 'work' hanging over us, which is ridiculous when you consider the active, social and energetic lifestyles many of us pursued before getting this. I am 28 and am still hoping that there will some form of treatment in time for me to begin a career, and resume the life I once had.