The biggest study of treatments for myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), 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, whereas others denounced the trial in its entirety.
The strongest opposition came from patient groups that 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 researchers in the United States 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. In about 25% of cases sufferers are unable to leave the house. The symptoms include exhaustion, poor concentration, memory problems, disturbed sleep and joint and muscle pains.
Patients improved with therapy
The trial, known as “Pace” and funded by the United Kingdom Medical Research Council, with the department of health for England and Wales, 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), in which patients are encouraged to become gradually more active, 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 patients feel they can cope with. In the trial patients had access to a specialist, but fewer improved with specialist care alone or with 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.
Patient groups divided
The Association of Young People with ME welcomed the findings. Mary-Jane Willows, the association’s chief executive, said: “These treatments should be made available to all patients.”
But the largest patient group, Action for ME, which was 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 2Â 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, in central England, 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 [qualifications]. I was quite isolated.” He could go out only with careful planning and got no support from his family doctor. He now has a full-time job — and his employer has no idea he ever had ME. —