I can find the references if really needed, but IIRC, the misdiagnosis rate of ME/CFS by GPs is something like a massive 50% when compared to specialists conducting research e.g. PACE trial, Newton et al, which themselves might not have been accurately diagnosing ME/CFS if using outdated criteria.
Combine that with how self-reported ME/CFS is significantly higher than clinically-diagnosed ME/CFS. Combine that with how roughly half of those with ME/CFS-like symptoms have an exclusionary medical or psychiatric diagnosis. Combine that with how PEM, the hallmark feature of ME/CFS, is poorly defined, detected, or recorded.
Without a gold-standard diagnostic test, the above is a giant recipe for uncertainty that any particular individual has what we conceptualise and define as ME/CFS, even those claiming to have met the Canadian criteria, NICE criteria, or whatever.
Given how the proponents of brain retraining go on about fear and anxiety as being central, perhaps a significant proportion of them really did have another undiagnosed illness that was being primarily perpertuated by psychological issues all along, which they then generalise to everyone with similar symptoms?
Or perhaps there is a more nuanced possibility. The existence of PEM makes it plausible that people with ME/CFS are vulnerable to psychological stresses, which is obviously going to be a problem for those with psychological issues. Perhaps for them, brain retraining, especially in the earlier stages of illness, removes that prognostic factor before it has a chance to make them worse in the longer term.
But despite all that, I know from personal experience, and reading about others on this forum and elsewhere, addressing psychological factors can help with alleviating the effects of said psychological factors, but they tend not to actually resolve the ME/CFS itself.
Rachel Whitfield: "I was advised to rest – physically, mentally and emotionally. Aggressive rest they called it where you lie in a dark room doing nothing for long periods of time. So I outsourced everything I could and cleared my diary."
I have been coming across brain retraining proponents claim they were told to avoid PEM at all costs or decrease activity as much as possible until they basically became isolated in a dark room by choice (emphasis on the choice part).
Is this really a common thing? Who is telling them to do this? Are they being misled by randoms on the internet who misinterpreted what pacing is really about in practice, or are they exaggerating in order to cast pacing in a bad light, just as Wessely et al did before them?
