Chronic Fatigue Syndrome, also known as ME, should be treated with a form of behavioural therapy or exercise, say British scientists.
Writing in The Lancet, they argue that the approach preferred by some charities, managing energy levels, is less successful.
Action for ME disputed the claims, which it said were exaggerated.
A quarter of a million people in the UK have the condition, yet its cause remains unknown.
Symptoms include severe tiredness, poor concentration and memory, muscle and joint pain and disturbed sleep.
This study looked at which treatments were the most successful. It compared CBT (cognitive behavioural therapy – changing how people think and act), graded exercise therapy – gradually increasing the amount of exercise, and adaptive pacing therapy – planning activity to avoid fatigue.
All of the 641 people who took part in the study had chronic fatigue syndrome, but were not bed-bound.
The authors say cognitive behavioural and graded exercise therapies were the most successful, both at reducing fatigue and increasing physical function.
With cognitive behavioural therapy, 30% of patients returned to normal levels of fatigue and physical function.
They say that adaptive pacing therapy is little better than basic medical advice.
ME/CFS
Professor Michael Sharpe, co-author of the study from the University of Edinburgh, said: “One of the difficulties in the field is ambiguity, what is the cause and most importantly, what is the treatment?
“The evidence up to now has remained controversial. The helpful thing about this trial is that it actually gives pretty clear cut evidence about effectiveness and safety.”
But the charity Action for ME said the conclusions were exaggerated and questioned the safety of graded exercise therapy.
Its CEO, Sir Peter Spencer, said: “The findings contradict the considerable evidence of our own surveys.
“Of the 2,763 people with ME who took part in our 2008 survey, 82% found pacing helpful, compared with 50% for cognitive behavioural therapy and 45% for graded exercise therapy.
“Worryingly, 34% reported that graded exercise therapy made them worse.”
The authors suggest that poor advice, such as suggestions to just go to the gym, could be responsible for bad experiences with the exercise therapy.
They said that the amount of exercise needed to be tailored to each person.
The Association of Young People with ME welcomed the findings.
It said it hoped that fears about graded exercise and CBT were laid to rest, and that the study needed to be repeated in children.
Professor Willie Hamilton, GP and professor of primary care diagnostics at Peninsula College of Medicine and Dentistry, said: “This study matters, it matters a lot.
“Up until now we have known only that CBT and graded exercise therapy work for some people. We didn’t know if pacing worked. This caused a real dilemma, especially for those in primary care. We didn’t know whether to recommend pacing, or to refer for CBT or GET.
“Worse still, not all GPs have access to CBT or GET, so ended up suggesting pacing almost by default. This study should solve that dilemma.”
NICE (the National Institute for Health and Clinical Excellence) said the findings were in line with current recommendations.
Dr Fergus Macbeth, director of the centre for clinical practice at NICE, said: “We will now analyse the results of this important trial in more detail before making a final decision on whether there is a clinical need to update our guideline.”
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A new study has cast further doubt on the idea that a virus called XMRV causes chronic fatigue syndrome.
US scientists linked the condition, also known as ME, to a mouse-like virus in 2009 after finding it in blood samples.
Now, UK experts say the discovery was a “false positive”, caused by cross contamination in the lab.
The illness may still be caused by a virus, they say, but not the one at the centre of recent controversy.
“Our conclusion is quite simple: XMRV is not the cause of chronic fatigue syndrome,” said Professor Greg Towers, a Wellcome Trust senior research fellow at University College, London, who led the research.
“It is vital to understand that we are not saying chronic fatigue syndrome does not have a virus cause – we cannot answer that yet – but we know it is not this virus causing it.”
XMRV (xenotropic murine leukemia virus-related virus) is a virus found in mouse DNA.
It was discovered in 2006, and was later found in samples from some patients with prostate cancer and chronic fatigue syndrome.
This lead to suggestions that the virus might be the cause of these conditions.
A paper providing some evidence in support of a link between chronic fatigue syndrome and the virus was published in the leading journal Science last year.
In the latest work, the team, from London and the University of Oxford, used DNA sequencing methods to study XMRV.
They say their evidence, published in the journal Retrovirology, shows the virus found in patient samples arose from laboratory contamination.
What is more, they think it is unlikely that the virus could actually infect people.
Professor Tim Peto, consultant in infectious diseases at the University of Oxford, said the original paper in Science came as a great surprise to experts.
“There have now been a number of attempts which have failed to find the retrovirus in other samples, and this research suggests that in fact XMRV is probably a contamination from mouse DNA,” he said.
“These latest findings add to the evidence and it now seems really very, very unlikely that XMRV is linked to chronic fatigue syndrome.”
But the authors of the original research say they stand by their conclusions.
“Nothing that has been published to date refutes our data,” Dr Judy Mikovits, of the Whittemore Peterson Institute for Neuro-Immune Disease, said in a statement.
Dr Charles Shepherd, medical advisor for the ME Association, said patients should keep an open mind on the issue.
“The jury is still out,” he said.
The biggest-ever study of treatments for ME, also known as chronic fatigue syndrome, has found that more people recover if they are helped to try to do more than they think they can – rather than adapting to a life of limited activity.
The findings of the study, published in the Lancet, are clear, but attracted immediate controversy. One of the biggest patient groups, Action for ME, said it was surprised and disappointed, while others denounced the trial in its entirety.
The strongest opposition comes from patient groups who believe there is a conspiracy by the psychiatric establishment to brand ME/CFS “all in the mind” – a mental illness that will respond to psychological therapies. They insist it is a physical disease, which probably has a viral cause. The claim last year from US researchers that a viral trigger had been found caused enormous excitement, and many refuse to believe the subsequent studies that concluded lab contamination was to blame.
Doctors involved in the new trial say they are looking only at treating the symptoms, not the cause. Their aim, they say, is to help the many people they see who are unable to go shopping, see friends or do ordinary active things.
In about 25% of cases, sufferers – including young people and children – are unable to leave the house. The symptoms include exhaustion, poor concentration, memory problems, disturbed sleep, and joint and muscle pains.
The trial, known as PACE and funded by the Medical Research Council together with the Department of Health, involved 641 patients across the country. It compared six months of four different treatments. The participants were followed up for a year.
It found that patients showed more improvement – and a small minority recovered completely – after cognitive behaviour therapy (CBT), one of the so-called psychological “talking therapies”, or graded exercise therapy (GET), where the patient is encouraged gradually to become more active, walking further and increasing the amount they do in a day.
Surveys have shown a preference for care and advice from a specialist in ME/CFS or “adaptive pacing therapy”. Pacing involves rest and restricting activity to those things the patient feels they can cope with. In the trial, patients had access to a specialist, but fewer improved with specialist care alone or pacing therapy.
Although the numbers who recovered were small, Trudie Chalder, professor of cognitive behavioural psychotherapy at King’s College, London, said that “twice as many people on graded exercise therapy and cognitive behaviour therapy got back to normal” compared with those in the other two treatment groups. Those on CBT and GET generally had less fatigue and were more physically active than the other patients at the end of the year.
Another author, Professor Peter White from Barts and the London school of medicine and dentistry, said: “While there is still room for improvement, this is a real step forward in informing patients with CFS/ME which treatments can help to improve their health and ability to lead a more normal life.”The Association of Young People with ME welcomed the findings and said it hoped it would begin to lay to rest fears about graded exercise therapy and CBT being harmful. It called for the study to be replicated in children. Mary-Jane Willows, AYME’s chief executive, said: “These treatments should be made available to all patients by those who are trained and experienced in dealing with CFS/ME.” She added that there was “an urgent need” to find a way to include house-bound patients in a trial. Participants in the study had to be able to get to hospital.
But the largest patient group, Action for ME, which had been involved in developing the trial, rejected its findings. Sir Peter Spencer, its chief executive, said: “The findings of the PACE trial contradict the considerable evidence of our own surveys and those of other patient groups.
“Of the 2,763 people with ME who took part in our 2008 survey, 82% found pacing helpful, compared with 50% for CBT and 45% for GET. Worryingly, 34% reported that GET made them worse.”
But one of the trial participants, a 27-year-old man from Northamptonshire, said the trial had changed his life. “It’s like night and day,” he said. “I owe so much to the trial, it’s unbelievable.”
He had ME for 13 years. “It affected my schooling quite badly. I left without any GCSEs. I was quite isolated.” He could go out only with careful planning and got no support from his GP. He now has a full-time job – and his employer has no idea he ever had ME.