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An ouroboros of bullshit, aka a thing of beauty.

We would definitely need to work with them, to have editor-level rights for some at least and anyway this should be a coordinated effort so the more participation we have the better it will turn out. I haven't put more thought than this yet, just adding on recent comments that suggest it would...

Those numbers are also in line with a recent Australian survey. This is good independent replication. The data may not be precise but they are correct. This is something that needs to be highlighted more: the exact same issues are raised independently with similar numbers. There are many...

I would like to know more about this. I've waited a bit to see if new details would emerge. Is this confirmed to be real? Certainly doesn't seem surprising, it's not even that many considering the timeline involved.

There's been talks (I can't find the comments but this is as good a place as any) about trying to build a training course and I think it's worth trying. ME-pedia would be ideal for that. It has version control, moderation and it's easy to export to another format. I can't imagine we can't do...

I think it means adherence to the "sick role" or whatever they call it these days. It's cringey to see so often this talk of "illness identity". I don't get it. To advocate for better treatment is exactly how a population of stigmatized patients would behave. And this weird obsession with the...

If I understand this correctly, and I sure hope I'm mistaken because this would make it lukewarm garbage, this is a "training program" in which they explain a disease that is fundamentally recognized as being a mystery and try to see if it changed anything in their cytokines and cortisol. There...

I don't think "boom and bust" and the weird 3 energy thing are part of NICE guidelines, neither is there any actual published literature on it, it's as speculative and made-up as it gets. It's clearly not a problem. Of course different rules when objective reality goes against the psychosocial...

Marketingspeech does not hold a candle to psychobabble. Do they just throw papers with words written on them and pick the ones that go furthest or is there another Rube Goldberg process by which they invent their vocabulary?

And yet millions of pounds were spent on the nth iteration of "is CBT/GET the right treatment for CFS (with the implication it also applies to ME but whatever we'll just get random people with fatigue)?" of the lowest possible quality tier. Small compared to disease burden but they did find...

The fact that most GPs know next to nothing, and most of it misleading or flat out wrong, reveals that to be either a naked lie or such massive incompetence that a total clean-up of everyone involved would be necessary. The MRC also claims that it is a research priority yet have only allocated a...

Besides the 1.5 minutes from BBC... is this story being censored? Has there been any serious coverage yet? The context is one of the biggest scandals in the history of medicine, yet there is near complete silence in reporting it. This is very hard to reconcile with the fact that the SMC quickly...

It's really not a good look when the contempt is made so obvious and public, it reveals serious fundamental problems into why we are so badly mistreated. The evidence for it abounds in anecdotal accounts of patients being mocked and insulted to their faces, but this is usually kept within the...

I also think that's why there is so much resistance. As I said before, I think ME is a stepping stone to a big ideological project for the psychologisation of illness and the return of psychosomatic medicine to its glory days, before most of its original misdiagnosed patient population were...

I think it's worth digging into the courses delivered to GPs, if possible. That the courses seem to draw upon, and that the RCGP cited, FINE as evidence when it literally concluded that it's useless treatment is just... bonkers. I think the content is likely to match the other NHS content where...

The only counter psychosocial ideologues have ever used has always been: our critics are just butthurt whiners who don't like what our research says. Now the PR strategy has to be adapted to fit with mounting criticism that grows in scope as well as in depth. It will likely be that people are...

Oh I know, but they do pretend to advocate for patients' welfare and represent our interests, hence the fake grassroots. In practice they are what an HIV denial association would be to AIDS patients. Far from representing our welfare, they sabotage it. Bit like... forget his name... GP who has...

Hmmmmm... some nervous sweating ahead. Though LOL at Goldacre, the "rational skeptic" who sees no problem with literally moving the finish line behind the starting line.

Thanks. I noticed there are copies. But I used that link previously, as others had, so they're now broken and it's not quite the same being on a patient forum than being hosted on the university website with a .edu address. It would just be great if it could be brought back up. Probably a...

PACE set that standard at the physical function of an average 80 year-old. It is published and accepted research, meaning this is an accepted standard as far as UK medical institutions are concerned, judging by their full-throated defense of it as "good, solid science", and "a thing of beauty"...