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Those questions are so weird that it seems fit to question the sanity of a system that treats them seriously. Even propagandists would recoil at how they are comically biased to the point of being cringe.

Seems to me to be pretty standard biopsychosocial, where they include bits of biology but screw it all up by misinterpreting associations out of bad questionnaires. And yeah this is just embarrassing. Silly, even. They keep taking associations that run in an obvious direction, but argue that it...

Well that's just plain false, it's literally been the explicit target of most trials in illnesses where pathology is not understood. And definitive conclusions have been not just drawn but asserted and pushed coercively into treatment models that have failed miserably for decades. If we combine...

Oddly, this reminds of trying to feed a pill to a dog that always catches them, no matter what you coat it with, and somehow insisting that the dog knows the treatment is good for them and actually loves eating the pill. The dog knows no such thing and doesn't care, it just doesn't want to eat...

And that's not based on anything. It's entirely wishful thinking, there is no evidence supporting this. And yet it is a consensus to make it a first-line treatment. This is the starting point they should be working on: why is this belief around? Not what patients think about them. This is not a...

This is a great example of what we're up against. We can't fix that with questionnaires, that's for sure. And it's coming up again and again with Long Covid, the same hubris being repeated over and over again. People who claim themselves to be experts, even saying something they would have...

I don't know if this is unique or particular to medicine, but it's absolutely baffling how so many studies have been done, though almost all of them poor to the point of being useless, and absolutely nothing useful has been learned out of it. Not One thing. When we look back at the very first...

That's just the same theme 3 times: symptoms, the illness itself. They're not even slightly different. Which is actually somehow a slight improvement into how these studies usually go, which is to ignore what the participants say and just put whatever they feel like as themes instead. But all...

I will never understand the resistance to regulating supplements. Sometimes it's almost said like it's something to be proud of, because supplements have little to no medical value for the most part, so it would be demeaning to bother. Except people do take them anyway, and in some cases they do...

Oh, that's what it was? I tried reading it but it's too meandering and I couldn't make sense of what the point of it was. Sounds like I got the better deal out of it.

Honestly, I cannot see how this is better than whatever was going on at the time when phrenology and other weird superstitious nonsense were popular. This junk is straight up abysmal. They feature the same magical thinking, but instead of real magic, it's just shitty stage magic where they can...

Ironically, most scenarios probably involve pwME in rich countries having to travel or buy from poor countries if whatever treatment achieves something can be developed but spend years in regulatory approval limbo while saboteurs do everything they can to block it. It all depends on the nature...

It's a problem of ability. No health care system in the world has the capacity to reach even 10% of people with ME/CFS, they just don't keep records of it. This is why proper record-keeping is important, you can't ever know what data will be important, but when you fail to keep track of them...

Yeah the title thread I chose kind of distracted from the point I wanted to make, which was to emphasize fatigability, which is not at all considered, over fatigue, while obviously keeping fatigue as significant, but as problematic in itself because 1) it's too common and 2) it's been completely...

Now if only they didn't keep trying the same things with the same intents for all the same reasons and expecting... I don't even know at this point. They keep trying things, and yet nothing ever changes. Even the things they try. Even the way they try things. Especially the way they assess the...

The hell is this nonsense? As for the 2nd part, not happening, and anyone familiar with it should know that health care professionals with Long Covid are just as discriminated as the rest of us, while those recovered are more likely to be spewing bullshit. Good grief it's been 5.5 and literally...

It's like Monsters inc., except instead of children nightmares it's real lives turned into waking nightmares, and instead of producing energy they produce, uh, themselves, I guess. So even worse than an actual fairy tales about monsters. No coincidence that in most disaster movies, especially...

Been here daily for 8 years or so. It's more like 3 studies, really. Long Covid hasn't even changed a single thing about it. In some ways this must be a lot like addictions, like gamblers who just can't quit because the next turn might win them back all they lost. Except they never lost a...

Appalling, and so very foolish. Every single possible good news can't be taken for granted, everything can just be yanked away for no reason. I'm pretty sure there was a lot of lobbying from psychosomatic ideologues behind the scenes, there always is. Disgusting.

As usual, trying to turn a simple-but-hard problem into a complex-but-easy one. Nothing works like that, tools like this solve no problem for patients, and yet they proliferate because they are clearly incentivized. A purely top-down approach, 'patient-centred' that has nothing to do with what...