2 thoughts on “How bad science misled chronic fatigue syndrome patients

  1. Bit of an annoying article, speaking as an M.E. activist. It claims that M.E. is “the international name” of Chronic Fatigue Syndrome, but in fact they have mutually exclusive definitions. Implying that M.E. is similar to ‘CFS’ furthers the mistreatment patients receive (from the medical field and sometimes family and government), by suggesting that M.E. is also fatigue-centred and untestable (it is neither of those things).

    The very reason why those behind the PACE trial and similar non-science have largely been able to get away with their efforts of shoving patients with very different illnesses under the one disease construct (a construct which hinges on the patients having erroneous attitudes (to life and activity)) is precisely this conflation. The baffling insistence on hitching the long-documented and not at all mysterious M.E. (WHO ICD G93.3) with the very recent and different disease construct ‘CFS’.  (Baffling from the patient point of view, that is – it makes perfect sense for those invested in minimising appropriate expenditure on patient care.)

    The writer of this article also seems to suggest that until now the claims about the efficacy of GET and CBT haven’t been debunked, although this is far from this case.

    I’ll link here to my advocate group’s CBT and GET Database. It hasn’t been updated for the last few years, but as I said, this debunking hasn’t all just occurred recently. It’s a 100+page comprehensive guide (with video links and summaries, if preferred) to the usage of CBT and GET on patients:

    aimed at lawyers, politicians, media, the friends and family of sufferers – but primarily at those clinicians who choose to recommend CBT and GET to their patients (or support the psychological approach to the illness generally). 

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  2. To be clear, the PACE trial was largely conducted with fatigued, non-M.E. patients. Because of the vague inclusion criteria, some M.E. patients may have been involved, but there’s no guarantee of it. In a sense I’d be less concerned if they’d just discuss PACE as a ‘CFS’ thing and leave M.E. out of it, but really the science is terrible and likely to make things worse for non-M.E. patients as well.

    As we say at HFME, everyone deserves a diagnosis of and treatment for the specific problems that *they* have, and being lumped under the catch-all ‘CFS’, which is only ever a MISdiagnosis, prevents that.

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