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Abstract: Background Post-COVID condition (PCCo) affects 5-10% of individuals following SARS-CoV-2 infection, with cognitive disturbances being a major feature. Central hypotheses regarding its pathophysiology include disturbed cell energy metabolism and oxidative stress pointing to...

It's not just about woo-spouting or the lack of woo-spouting. The real truth is that it's about who is & is not perceived as a genuine patient, and it's about us being lumped together with the patients Jonathan elliptically describes as a "different lot of people... with an entirely different...

One other point I'd make is that, of the private physicians in the UK who have made a practice out of seeing pwME - the ones that severe & very severe patients tend to turn to when their needs are not being met or they're having difficulties with the NHS, including e.g. requiring social care or...

There is a video interview in which Afrin discusses the supposed connection between autism and "MCAS". It's on the "TalkMCAS" site (link), "Video 3", starting at ca. 10:03. I've also been asked where the screenshots I posted (link) - where Afrin claimed a possible link between "MCAS" and...

I have considerable concerns about what MEA have been doing in this area. Last month Suffolkres mentioned on the forum (link) how the involvement of their "Health and Social Care Team" in Suffolk came at the expense of local advocates. There is the apparently ongoing MEA/BACME collaboration. In...

Afrin claims it is a likely cause of spontaneous human combustion: The screenshots are from ch29 of Afrin's 2016 book "Never Bet Against Occam".

It's a short article, only 2 pages long. While it's not at all heavy on specifics it's actually pretty good. PEM is described accurately as the hallmark symptom & the delayed effect is mentioned. Symptoms are described accurately; as are the DecodeME results. I see nothing misrepresented or...

What struck me first is where they talk about the "Primary Fatigue Service" in Wales and how regrettable it was that this clinic had been suspended. What that clinic provided was group-based nonsense along BACME lines and also recommended "brain retraining". I can't find their webpage on the...

(Perhaps we should have a separate "On the charities' support for the NHS psychobehavioural clinics" thread?) Moderator note: This post has been copied and some responses moved to a new thread here. It would make complete sense if, at the most senior levels of the two national charities, there...

This post has been copied and the following posts moved from Enduring symptoms: A call to immediate action, 2025, Barnes It would make complete sense if, at the most senior levels of the two national charities, there is a privately held belief that ME/CFS is at least in part psychosomatic...

Could you elaborate a little on the rationale the 'people who speak loudest' give for supporting more funding & resources for the psychobehavioural clinics? To me the situation seems straightforward: if charities & advocates want these clinics to receive more funding & resources, then...

Given that the DSQ PEM metrics do not seem to be capturing PEM well at all, and are producing rather unexpected results in exercise trials, I don't consider this to be a particularly wise recommendation. Questionnaire "validation" refers to the battery of assessments that are conducted such as...

It's unfortunately not at all uncommon that authors are asked to make unwarranted changes to wording that they would not otherwise have made. (Academic publishing can be a minefield - the actions of reviewers can be far more egregious, such as making demands to cite their own papers or...

Among the other contributions to this issue there is a debate between Burton & a rheumatologist at Imperial about "services for patients with symptom-based disorders": [url unfurl=false]https://www.sciencedirect.com/science/article/pii/S2514664525002619[/url] The entire debate is certainly a...

************************************************************************* Part of the RCP Future Healthcare Journal Special Issue The thread on the editorial for the special issue is here This thread is where the Special Issue was initially discussed. It therefore includes discussion of the...

It was interesting as I think it pretty much represents the perspective of the average GP - someone who is neither particularly hostile or particularly sympathetic to us - on the psychobehavioural clinics.

There is some good in this but it's unfortunately rather holistic-biopsychosocial. A few brief quotes:

Attending to the routine needs of housebound patients seems to me something which GPs & nurses should be capable of handling in the main; for non-routine needs we really need services in secondary care, especially for the very severe such as those requiring feeding support or in severe pain...

Those working in the NHS psychobehavioural clinics are, by and large, a bunch of low-grade psychologists & physiotherapists who have an ideological view, an idée fixe, as to what ME/CFS actually is & that they are qualified to treat it. That is manifestly untrue. There is no need whatsoever for...