THE appeal by Sir Peter Spencer, of Action for ME, for ME sufferers all over the UK to complete a questionnaire about their experiences with Graded Exercise Therapy (GET) exposes more serious concerns than any comfort it offers (Help us with survey, August 11, 2010).

It is defiance of a fundamental scientific principle to give any treatment before thorough research trials, including risk assessment, have been conducted. One would not expect a new drug to be prescribed or generally available until it had been tested. Yet Graded Exercise Therapy (GET) has been given to human guinea pigs in a network of clinics for five or six years now, despite fears that it may be irreversibly harmful.

It may seem shocking that AfME have been getting variable, even contradictory, reports and feedback from clinics and their patients but it confirms what many sufferers and researchers have known for years: that there is no proper co-ordinated training for clinicians giving GET, which is known to be dangerous if overdone; that patients may tell therapists and GPs one thing but say quite another to their friends and in online forums and that reports are not standardized or independently verified, in a way that would make them reliable.

The results of AfMEs, perhaps well-intentioned, survey are likely to be flawed in at least a couple of ways: Firstly, because the purity of any sample of people with M E (Myalgic Encephalomyelitis) is polluted with patients having numerous other conditions subsumed under the broad Chronic Fatigue Syndrome that they tolerate, thus making it impossible to extrapolate the findings from these various patients to those specifically with M E; secondly, the results are likely to be skewed because people who have been made worse, perhaps housebound, even bedridden, after GET, may not even know about the survey, let alone be able to complete it and so will not even be considered. These and other impediments were present in Action for ME’s own headline GET study for ME Awareness Week in 2008, which Sir Peter himself agreed may have caused the reported 34 per cent made worse by GET to be an underestimate. Yet, astonishingly, they still promote it.

Since every study of Graded Exercise Therapy (GET) and its stable mate Cognitive Behaviour Therapy (CBT), to date, has shown that CBT is ineffective for people with ME and that GET makes a majority worse, I call upon GPs to stop referring ME sufferers and for the service to be suspended, pending a completely independent review by academics of equal qualification with no competing interests.

I fear that my plea will fall on deaf ears including those who make a living from advocating and practising GET and who might, otherwise, be forced to admit that their funding would be better spent on promising biomedical research, which would provide real hope for people remaining ill with this dreadfully disabling illness for decades.


ME Free For

North Street