The long march by patients to prove that the official treatment for ME/CFS was wrong and damaging. [Repost]

By Jerome Burne

 A long-running battle between patients and therapists over the best way to treat debilitating chronic fatigue was won by the patients back at the beginning of November. In a dramatic U-turn, the NICE guidelines on the best way to treat ME (Myalgic Encephalitis)/ CFS (Chronic Fatigue Syndrome) were reversed.

Out went GET (Graded Exercise Therapy) – doing a bit more every day – and in came advice to only exercise as much as felt comfortable. 

 What hasn’t been made clear in reports of the change is that it was the culmination of a remarkable coup, pulled off four years ago by a group of ME/CFS patients, which had forced ME/CFS therapists to release the raw material collected during a trial that supposedly proved that GET was scientifically based.

  The therapist said it proved the treatment worked, the patients claimed they found the treatment so ineffective and unpleasant that the results must be false. 

 The patients then had the full data reviewed by independent experts who reported that the results had indeed been “adjusted” to make them more favourable. The therapists dismissed the review as wrong and irrelevant. 

 At the time the story was almost completely ignored by newspapers and TV, with the exception of the Daily Mail which carried a story of mine.

 The victory last month, which removed GET, came in a provisional review of the best treatment for CFS/ME. The patient activists, who had been campaigning for this change for years were on the committee that drew up the new guidelines. 

 I’m republishing an edited version of my September 2016 blog,which tells the story of the patients’ coup. Partly because their part in the guidelines U-turn has been effectively air-brushed out but also because it seems very relevant in the current climate when opposition to official medical views are routinely dismissed as fake and foolish or malicious. It’s a welcome reminder that the official view can be damagingly wrong and the patients and others who make informed criticisms deserve to be listened to.

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