I replied to the latest comment:
Virtually nobody I know with ME or CFS, and that's a heck of a lot of patients probably numbering in the thousands, dismisses the involvement of the brain in ME. We most typically push brain involvement and brain research. Claims that we do not inevitably are linked to the issues we have with some psychiatric explanations, explanations which have extremely poor evidence and are mostly based on unproven and inadequately tested hypotheses.
Many of us have tried both CBT and GET, and they failed. They usually do, even in the PACE trial. The PACE trial is, in my current view, an exemplar of what is wrong in modern psychiatry. It has so many obvious flaws, from basic logic and reasoning to statistical error, all of which can be seen in the studies themselves, and most of which have been published and ignored. There is no objective evidence that any substantial improvement can be made by pursuing these hypotheses. Requests to have full data disclosed from the PACE trial have been ignored.
There are other studies which show no substantive benefit or a decline. Given the misdiagnosis rate is often more than 40% in the UK using the Oxford criteria, and given that the Oxford criteria has been shown to misdiagnose about 60% of patients if I recall correctly, the real problem is failure to diagnose. I do not doubt some subset improve, but what was their correct diagnosis?
In the history of medicine not ONE claim that an illness is psychogenic, that is caused by mental factors, has ever been proven. Not one. If anyone wants to claim otherwise, please cite a paper. It wasn't true for probably hundreds of claims including MS, gastric ulcers, diabetes, rheumatoid arthritis, gastric ulcers, breast cancer and cancer in general.
Substantive evidence now exists that ME symptomology is both CNS and peripheral. It involves abnormal brain electrical activity (qEEG), abnormal MRI results (looking at brain density and thickness, not for lesions though those are often seen too), abnormal brain structure (right arcuate nucleus), high brain microglia activation (specialized PET scan) and many other findings. Further, there is a massive reduction in metabolic capacity after activity, as demonstrated by repeat CPET scans, two days in a row.
ME patients do not deny brain involvement for the most part, it is a PARTICULAR unproven hypothesis they are rejecting, and proponents of that hypothesis sometimes claim (without evidence) this is due to the supposed mental problems, or stigma, or false illness beliefs, and so on. Yet they have never provides any substantive evidence for these assertions. Nor is their hypothesis substantively demonstrated, and every time its been subject to objective evidence they have not disproved the null hypothesis. Where is the evidence they are right? Certainly not in the PACE trial papers.
