From The Guardian, 18 February 2011. (Story by health editor Sarah Boseley).
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 n