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It's still mostly an aspirational idea with almost zero interest within medicine. At least they're realistic about it: The resistance of the biomedical research community to patient-led partnerships was made painfully clear during the COVID-19 pandemic. Within six months of the outbreak...

Technically, it should be comparable to the depth of evidence for avoiding smoke and other types of bad air while asthmatic. That is: very little. It's just that it's not actually possible to avoid exertion, and the evidence is completely misunderstood. As is the context. And the lived...

Oh those don't matter. This is evidence-based medicine. See, the ayes have it, and there's easy money in it. That's all that matters.

This is really the main issue with EBM and pragmatic trials. All it takes is for the trials to be run and somehow it becomes evidence. It doesn't matter that it has no impact, it can be justified in clinical use out of nothing at all. It doesn't matter that there is no useful evidence, the mere...

100% right. Doctors get it completely wrong all the time. The recent misuse in another thread from the GP magazine in the UK is just one example. No wonder they don't get it when we use the term, but also they simply disbelieve us when we explain its consequences. Gaslighting is so much more...

What a terrible attitude. Straight up dereliction of duty, as if our situation is any comparable to theirs. There is zero equivalency and calling their own situation gaslighting is massively insulting to us, who are losing our lives over this, while all they have is, what, they feel a little bit...

What treatment?! And best is being used very generously here. The least-worst-but-still-not-effective-at-all is not anyone's definition of best. Well, only in healthcare, I guess. Although at least it's presenting the Patient-led paper (which was one of the top downloaded papers in Nature) and...

Also posted with a different title on their website: The Most Important Question About Long COVID https://hms.harvard.edu/news/most-important-question-about-long-covid Snyder-Cappione was particularly intrigued by long COVID's overlap with the symptoms reported in a condition called myalgic...

To people who think that POTS is just a version of deconditioning, or whatever, they are the same goal. It's truly absurd how little medicine understands about deconditioning when you add all this up. It may as well be nothing at all.

I don't agree with that. There is no need to test pacing. It's not a treatment, or an intervention. There is no right way to pace, and it would take resources away from things that could be useful. Although of course if they come from a pool of funding for "non-pharmaceutical interventions" the...

(From the no discussion thread with the responses) Oh that's a point I missed and an important one, even though I made it in the past. They tested their own product here. They literally invented this, then were handed millions to "test" whether their own product was any good. This is exactly...

Well the delay has passed so here is mine. ____________________________________ I want to point out glaring omissions in the review by White and its 50 signatories. Following publication of the final draft of the guidelines for public consultation, the process was paused, the final...

The premise is absurd. Why would it even do that? This is seriously getting into fanatical homeopathy territory. And of all modalities, HIIT? Good grief. Sometimes I get randomly reminded by my brain, it does that, that Corn Flakes were invented by some very religious dude with the intent of...

Those two are very dependent of one another, though. Very much. Especially in the US. And the latter is a subset of the former. I'm not sure it's as low as 21%, though. I guess it shows some damn strong resilience in there, but there's always a relative scale applied here, when you can't even...

So, 4 and a half years ago, we were subjected to this garbage yellow journalism report about how "eminent scientists" had retired, again, as it wasn't the first time they claimed to, from CFS research because of so much abuse and, uh, mean tweets? That can't be right. Whatever. It started with...

A few years ago Wessely had an interview, probably the desert island music thing, where he was asked the big takeaways from his career researching "chronic fatigue". One of the things he mentioned is that at first he thought it was depression, but they were surprised to find out that it isn't...

Sure but I'll freely say that I don't care. It has nothing to do with us. At all. Not even one bit. Blaming a community of millions on the behavior of a few is despicable behavior. It's wrong in every single way. Just as we shouldn't blame the entire medical community for his own misbehavior...

There is, but it's possible it hasn't kicked in yet. There was a delay phase built into it. 2024 actually sounds about right but I'm not sure.

Anxiety is generally defined as related to thoughts, as worrying. If they're going to use this "biochemically", they need to separate them completely because they have nothing to do with the psychosocial definition that is the commonly used one. There is nothing in common between anxiety and...

Maybe alongside other publicly available examples. There are very nasty presentations out there that very clearly paint a false and bigoted version of us. And of course SMILE's "the bastards don't want to get better". Fiona Fox calling us Nazis. No shortage of that, and very much worth raising...