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Thanks for this, @Adam pwme . Good to have it laid out clearly. Some points from memory, will need checking: Wessely has been either on the Science Media Centre's board of governors (or whatever they are called), or a medical adviser to it, since its inception. Even if he ever held no formal...

Personally I wouldn't trust anything from Musk and Grok. Besides, Grok and other AIs are basically just thieving the work from Wikipedia, PubMed, et al. There will be nothing original or of added value in it whatsoever.

Sadly, it is convincing the bean counters about the real economic costs of LC (& ME/CFS, etc) that is likely to be where the real catalyst to take it all seriously actually comes from. So, while they deserve their share of criticism generally, they will probably be some of our best allies...

I agree that in relation to the symptom of fatigue that the criteria used in ME/CFS studies are not so relevant, for the reasons listed by others. IIRC, going back to at least the Holmes 1988 CFS criteria the symptom chronic fatigue has always been explicitly differentiated from chronic fatigue...

Diagnostic criteria is a critical part of the methodology in a treatment study. But otherwise, I agree. It is largely irrelevant which criteria they use, none of the studies are demonstrating any consistent, sustained, robust, practically meaningful benefit, let alone genuine recovery.

and contrary to fundamental administrative‑law principles. Not to mention fundamental scientific and ethical principles.

“There seems to be a want (both for patients and neurologists) to find organic causes where one certainly doesn’t exist”. “The main problem is the lack of access to help for patients… few neurologists specialise in this common problem”. Another added, “explaining the diagnosis is made more...

Well imagine how sick patients feel when endlessly confronted with doctors with this kind of attitude, who simply cannot say 'we don't know what is wrong or how to treat it', and instead insist on imposing non-diagnoses and non-treatments, and blaming it all on the patient when it inevitably...

Let me guess: Subjective self-report outcome measures only, and no serious discussion of the major methodological issues and limitations and the dangers of drawing conclusions on that basis.

Advancing knowledge on Long COVID requires a return to the fundamentals of measurement science. Thank you.

I live in the tropical north of Australia, in the monsoon region, so I don't get that exactly. But we do occasionally get a situation at the hottest time of year (roughly Oct-Dec), in mid-late afternoon when the sun has been blazing away all day in a clear sky, sometimes for weeks on end, and...

'perceived' niggles

Also worth trying nasal strips. Useful for both diagnostics and management. Use them for years before the surgery.

At the time everybody thought it was a psychosomatic thing. And way too many, especially within the medical profession, still do.

Turbinate reduction and correcting a deviated septum.

I am not unsympathetic to patients struggling when confronted with the appalling reality of their situation, including inappropriate diagnoses and explanations and treatments. But believing in and acting on unproven diagnoses and claims about the underlying causal process, and how to treat it...

That is a big plus. 40C @ 35% humidity is much less of a problem than 35C @ 70% humidity. Still not great, but a lot easier to deal with.

Exactly.

It is sickening to watch what we, and others, warned would happen unfolding as we said it would, while the government and medical authorities remain overwhelmingly in defensive denial.

The only hope I want is via realistic robust studies. Anything else is a methodological and ethical cesspit. I regard recovered patients – to the extent they actually exist – as one of the more misleading sources of insight, ideas, and progress. Especially when they are making a buck from their...