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Yup that framing is quite a doozy. They just never heard about it, and it's why social media is such a frequent target of their ire: it's the only place mistreated and gaslighted patients can find out that it's not just them, not unique, not even rare. Systemic problems like this used to be...

Mending Mistrust–Can We Rebuild Faith in Medicine? https://www.peoplespharmacy.com/articles/show-1384-mending-mistrust-can-we-rebuild-faith-in-medicine Posting because it uses ME/CFS as an prominent example of this problem, and the show appears to have a significant audience. It's a 1h+...

This probably is the core of the problem, why evidence-based medicine is largely useless: it's possible to feel better in general, without affecting the actual problem, being no better off in the end. You're better, but also you're not better. They're both true. The former is temporary, the...

Worse and better are possible. Which is mind-boggling but it's probably things like that that help reduce the possible models enough to hone in on the correct(s) one(s). It's so bizarre, but it's precisely that it's so unusual that it only leaves a few valid paths. I'm seeing this approach in...

On that I'd say it's rather no specific, consistent abnormalities. There are many abnormalities, and it's impossible to say whether they are downstream or play any causative role, in triggering or perpetuating, but there definitely are many. And they vary between people, and within people, but...

We may be lucky if it's only two :rofl::( There may be a root with many smaller branches. Or there may be more than one root branch, possibly by factors such as location. And they may not be exclusive, as we saw with attempts to create subsets of Long Covid, they are never exclusionary, some...

It will never cease to amaze me how Wessely managed to get up so high without ever having actually done anything for it. His roadmap is one of administrating various things, but as a psychiatrist he has contributed absolutely nothing worthwhile, in fact much of it is fraudulent at best, a...

But in real life it's more complicated than that. It's almost impossible to work this out in criteria, but many of us, like me, did not have chronic fatigue for many months or years while we had PEM and many of the other symptoms. There was fatigue, sure, but it was a distant and relatively...

And almost always used to mean the opposite of what it means, while feebly hiding the fact.

OK that's great. It'd still be better if they could adjust the studies when new information comes in, but for sure many did start knowing nothing and things tend to be set in stone after a point. Academia, pffft.

Yeah I guess it's just been taken a little to excess, the blood-brain barrier is definitely significant but it seems to have been taken as license to consider it basically the equivalent of "air-gapped" with physical system security.

As models go, this isn't even worse than the traditional psychosocial view. It's just as much nonsense and assumptions they can't be bothered to falsify but easily could.

That would be no it can't, no it can't, and no it's not. What an odd thing to write. Although what a perfect example what pragmatic evidence-based trials have become completely useless to the point where none can be trusted as reliable. Not a single one. Anything can be found to do, cause or...

Something I've been meaning to work out for a while. For any theoretical model explaining the mechanisms of ME/CFS, there are necessary conditions that must be met, without which a model simply cannot account for the data. What are those? Especially with a purpose to falsify flawed models and...

Today, the CAN-PCC Collaborative published its first two recommendations, both conditional (i.e. optional): The CAN-PCC Collaborative suggests masking for asymptomatic adults in community settings be used for the prevention of COVID-19 infection to prevent post COVID-19 condition (conditional...

They seem incapable of considering the far likelier explanation: that this effort allocation is a biological mechanism based on the body's ability to function. So with that in mind, it wouldn't be making a choice, conscious or not, rather it's limited by a constraint. From that perspective...

They basically excluded many of the most typical symptoms, so not a great study by any means: Not known to them, I guess. It's so hard to, like, read and pay attention to stuff. Like, who has time to read the first studies that came out and established the very concept, when you're busy doing...

Maybe I'm misremembering, but I think that the 2007 guideline actually mentioned an upcoming trial that would prove it correct, likely referencing PACE. It was really all set up together, with the main piece of evidence happening in the future, so that piece of evidence could not fail, hence...

Also since FINE was mentioned, a timely reminder that this is the trial that (IIRC) had a primary objective outcome that was swapped for a subjective one, and where the published paper had the famous quote about how "the bastards just don't want to get better". It was a terrible offensive trial...

Aside from the absurdity of arguing that criticism of the trial happened after they found out what was in the trial... And only loosely related, but this is something I keep seeing lately and although Garner didn't use those words, he kind of said the same thing. When it comes to bad trials of...