the "stigmatising" research is a deliberate strawman/mischaraterisation. We aren't critical because it's psychological research, we're critical of psychological treatments because they don't work. Answering differently on a self report questionnaire because you are more optimistic is not the same as improved functioning as measured by neuropsychological testing or actigraphy or 2 day exercise test (measuring the unusual drop in ventilatory threshold).
A million times this. Show me that CBT/GET works on a well-characterised group of ME/CFS patients with objective measures of long-term health benefits, low drop-out rates and decent evidence that it doesn't have risk of long-term exacerbation of symptoms, and I'll sign up tomorrow.
I don't object to the characterisation of ME/CFS as a psychiatric illness because I think there's any shame in having a mental illness - there isn't - but because there's increasingly good evidence against that hypothesis and because the evidence that psychological treatments work for ME/CFS is all fatally flawed, and flawed in the same way. The fact that the proponents of these studies haven't tried to address these flaws in future work but have instead resorted to putting
all criticism into the 'abusive' bucket suggests that they don't have much confidence that an unflawed trial would back-up their original studies (and the objective measurements taken during the FINE trial seem to demonstrate as much).
Furthermore, the underpinning view that this is 'false illness belief' frees up the practioner from considering whether their proposed intervention might have nasty side effects and whether a positive result for any old nonsense therapy might indicate that the trial design is flawed. In other serious illnesses, I doubt one could get ethical approval for testing homeopathy/crystal healing/rhythmic chanting on children and, if one got a positive result, most journals wouldn't touch with a proverbial bargepole because a supposedly positive result would lead peer reviewers to forensically probe the trial design for reasons it might give a false positive. Only if one believes in 'false illness belief' could one look at something that is alleged to involve asking MS sufferers to jump around shouting 'I'm strong like a tree' and think that would be a good treatment to test on kids. Same for getting ethics approval and final publication.
Beyond that, however, I don't really care around whether the aetiology proves to be 'mental' or 'physical' in nature: Like most patients I'm only interested in what works. Hence why I'm a little wary of making statements like 'this proves it's in the blood not in the head'. If tomorrow there was good evidence that ME/CFS was caused by neuroinflammation (rather than, say, due to metabolic issues) you'd hear no complaint from me even if it meant some then viewed this as proof it was 'all in the head'.
As a community I think we need to be very clear when somebody accuses us of just not wanting to accept the possibility that ME/CFS may originate in our heads. For me, personally, it is
false illness belief and exercise therapies based on this hypothesis that I do not accept and I do not accept these
because the evidence for it is so poor. Show us a treatment with good evidence that it works and most of us will accept that regardless of the aetiology it implies.
ETA: was it the FINE trial that showed no decent effect on employment/health usage etc? Or, on second thoughts, am I confusing my trials?
I think the answer is "probably not". The Cochrane document about changes to the review groups says:
