People with chronic fatigue syndrome and ME have criticised the findings of an Oxford University study that suggests gradual exercise could help with their condition - which leading charities say could worsen symptoms.
Researchers found graded exercise therapy (GET) and cognitive behavioural therapy (CBT) had a marked effect on symptoms such as extreme tiredness, joint aches and memory lapses.
However the UK’s ME Association said it would continue to strongly oppose the use of GET because its own research suggested exercise can exacerbate the symptoms experienced by about 250,000 people in the UK.
In the study, published in journal The Lancet Psychiatry and part-funded by the UK Medical Research Council and the Department of Health, researchers found continuing improvements if patients did graded exercise or cognitive behavioural therapy.
“These are not magic cures,” said Michael Sharpe, Oxford University psychiatrist and joint lead author of the study, according to Science magazine.
“This is just the only game in town really in terms of an evidence-based treatment if you have got this condition to get yourself improved.”
The research published on Wednesday follows a 2011 PACE study where researchers tested different treatments on more than 600 patients. They split them into four randomly allocated groups, with one receiving medicine only, a second given medicine and Alternative Pacing Therapy, a third receiving medicine and GET and a fourth treated with medicine and CBT.
In the follow-up study, all groups were asked to self-rate their health in a questionnaire, to which 481 patients responded. Their self-assessments indicated exercise and therapy to encourage a positive outlook had the greatest effect.
The follow-up study concluded the beneficial effects of CBT and GET continued for more than two years after the initial study. It also found that those in the first two groups during the original study had since improved - though researchers said this may have been caused by patients seeking out exercise or CBT treatments afterwards.
“In so far as the need to seek additional treatment is a marker of continuing illness, these findings support the superiority of CBT and GET as treatments for chronic fatigue syndrome,” the study said.
The ME Association said it had concerns about “the design, the lack of objective measures of outcome, and the way in which the results of the PACE trial have been reported to mean that the people with ME [OR]CFS will recover if only they start exercising and develop a positive mental attitude.”
It pointed to its own research that more than 70% of patients it interviewed found that the exercise therapy had worsened their symptoms and called on Nice to withdraw its recommendation of the treatment.
“The conclusion that people with ME [OR]CFS will respond to GET because they are simply inactive and deconditioned is no longer tenable,” said Dr Charles Shepherd, medical advisor to the ME Association.
The use of CBT was based on “a seriously flawed hypothesis - in this case the idea that ME [OR]CFS is a psychological problem that is maintained by abnormal illness beliefs and behaviours”, Shepherd said. “It is deeply depressing to find that Nice is continuing to recommend two forms of treatment that are often ineffective, and in the case of GET potentially harmful.”
Sonya Chowdhury, Action For ME chief executive, criticised how the study had been interpreted as meaning exercise and a positive attitude were the way to treat fatigue syndromes.
“It’s clear that, although the management approaches tested in the trial were of some benefit to a proportion of participants, it was not of benefit to others,” she said. “This research paper did not indicate that all that is needed is exercise and positivity; this is a significant insult to the 250,000 people in the UK who often experience dire injustice, ignorance and neglect.
“Considerably more research is needed to investigate the biology of ME and effective treatments to meet the range and severity of symptoms that people experience with this illness.”
Guardian News and Media