The UK's largest study of treatments for chronic fatigue syndrome has provided the first definitive evidence of what helps those who suffer from the disabling condition that affects 250,000 people in the UK.
The best therapies are those which help patients test the limits of their capacity, such as by gradually increasing the amount of exercise they take, the research shows. Therapy aimed at helping patients live within the limits of their capacity, by balancing rest and activity, is much less effective.
But patients' support groups angrily rejected the findings yesterday, saying they were "surprised and disappointed" by the "simplistic" results.
The attempt to settle the argument over the most effective treatment for chronic fatigue syndrome (CFS) – also called Myalgic Encephalomyelitis (ME) – was never going to be easy. It is marked by poor memory and concentration, disturbed sleep, aches and pains and disabling fatigue. It can last for years and controversy has raged for decades over the best treatments.
Now researchers from London and Edinburgh who monitored 640 severely affected adults for a year have concluded that cognitive behaviour therapy (CBT), in which patients are helped to think about and test how they can do more, and graded exercise therapy (GET), in which they are helped gradually to overcome the limits imposed by the illness, are the most effective treatments. In contrast, helping sufferers live within their limits, called Adaptive Pacing Therapy (APT), was much less helpful.
Overall, 60 per cent of patients who received CBT or GET made progress and 30 per cent recovered sufficiently to resume normal lives. Among those who received APT, half as many (15 per cent) resumed normal lives. Fewer than one in ten patients left untreated recover, the researchers said.
Michael Sharpe, professor of psychological medicine at the University of Edinburgh, and co-author of the report, said: "This is a useful effect for a substantial proportion of those affected, but it is not a solution to the illness."
The findings, published in The Lancet, were hailed by experts in chronic fatigue as "very significant." Derrick Wade, professor of neurological enablement at the Oxford Centre for Enablement said: "This means we can allocate resources to treatments that will benefit patients and stop allocating resources to treatments that will not."
However, Sir Peter Spencer, chief executive of Action for ME, said its own survey showed 82 per cent of respondents found pacing therapy helpful and a third said graded exercise made them worse. The ME Association said the findings were based on an outmoded model of the illness. "Deconditioning due to fear of activity is not the cause of the debilitating fatigue," it said.