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In blood, @DMissa , in blood. Some things gravitate away from blood; you won't find them there. Who was it 15 or so years ago that admonished the then CFS research community to not look at tissue? Look at tissue. Comprehensively. Then we can talk.

Ah. A US dig? Misleading according to whom? Fact sheets aren't the bread and butter of forums, including this one. But they are a great add. Cool, but how well have "people with experience in relevant fields" served this community in the past? Yeah, well, you said it.

Except in medicine - or so most everybody in at least the US were taught. Isn't that what all of us, including you, have been doing - to one degree or another - on this forum?

I suspect Chia. That's likely the originating theory. Doesn't mean he was right, but he did publish some studies I think that supported his stance. A lot of people think he was right in at least a subset. That's true for everyone who likes to think themselves a ME/CFS pundit, ie, they and...

It is a far cry from ancient history in the eyes of 99% of clinicians. It is a far cry from what is taught to this day in medical schools. And it's a far cry as far as insurance agencies are concerned.

First, I'm happy to see you writing that ME/CFS is a disease. More importantly, it is NOT an ordinary disease. It is a contested disease, and as such is riddled with perils for its sufferers that ordinary diseases to not impart.

Not remotely what I was trying to convey. Sorry for the poor wording. I was suggesting the likes of the BPS folk will probably be happy to replace the remnants of the denigrated theory with their own, and trumpet it - but not on the patient advocates' website or whatever. You tear something...

Agreed. But I don't think that is what is being bantered around here. I may be wrong, but it seems to me the crux of the thread is to clarify what steps can be taken to correct what are perceived as other patient groups' errors.

I appreciate wanting to get it right, wanting others to get it right. Playing the role of spoiler, however, comes with risk. If we want to be naysayers, I suggest we'd best be in a position to replace what we're undercutting. What do we actually know about the biologics of ME/CFS? Not much...

I'm not sure. I don't even know if it works since I've seldom taken it alone - it's always in conjunction with other sleep meds.

Grim stuff. I cannot live without sleep meds. Evidently I can't live with them either.

I have never heard of such a thing. Maybe they believe they have brain damage and assume it's a common ME/CFS feature? I wouldn't be so quick to attribute nefarious intent to fellow patients.

It's not dead yet.

I don't think this credibility with patients' explanations is necessarily at the root of the problem nor peculiar to ME/CFS. I don't think it's an accuracy thing as much as it is a siloed thing compounded by arrogance. I see it in cardiologists when I attempt to explain a channelopathy''s...

New? This has been a refrain for two decades at least.

I've a couple concerns about this thread. The difference between patients who spread biobabble and clinicians/researchers who spread biobabble is power. Power resides with the latter group. There is no equivalence here. The onus is squarely on clinicians and researchers. Patients are just...

Sure, but it's not as if there isn't precedent. AIDS activists did it at a time their illness was taboo because of its own stigma. Of course, death was the ultimate advocate and helped immensely since it was politically garish to see so many dying. But that stigma was huge at the time, and only...

Individual politicians are vilifying the sick regardless. At the very least, a coordinated entity from disparate communities of the sick could generate an effective response. But perhaps even better, since as you've pointed out there's years before a general election, there's time for distinct...

I'm not from the UK, and I apologize should this come off as naive, but could you move to legislate change? Through the vote? How large of voters' block might pwME and LC and PTLD and MS and Parkinsons, etc,, command? If they were somehow mustered together, coordinated? I often wonder about...

Sickness behavior implies an observer. It involves a third party perspective. Little wonder it was coined by a veterinarian because his patients couldn't directly communicate how they felt. He had to infer. And by virtue of the word "behavior", thanks to the BPS cult, sickness behavior is...