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Sounds like something to bring to the NICE committee. This is a huge embarrassment to an institution that elected to continue as-is two years ago. NICE has enabled this disaster while the NHS gave it a boost in exactly the wrong direction. With an obvious, explicit, statement that FND is nothing...

There really is no other way to put it but the "sub-threshold" hand-waving is completely idiotic and morally bankrupt. Any health care system that promotes this kind of nonsense needs to be imploded and rebuilt entirely. "It is thought that" is step 1 in a 10-step process, it cannot ever be...

Also: ugghhhhnnnnn but research from Saudi Arabia comparing pain between males and females is conflicted at best.

Nevermind the "non-fatigued" part that makes the whole thing dubious, is this phrased correctly, meaning CFS patients have more pain tolerance? It's a bit ambiguous as it could apply both ways. I'm not really sure how this could be interpreted in an objective way, though. Being in pain all the...

There may be value in arguing for medical needs that have high demand and near zero supply, without specifically making it about us. It's weird but medical priorities are clearly built on what researchers find interesting and pay little to no attention to need. There is a lot of unmet demand...

It's probably more accurate to say they provoked acute fatigue. Which is a perfect example of how confused medicine tends to be about this critical difference. 3 inches of rain in 24 is a problem. 1/2 inch of daily rain is one hell of a more serious problem, even if in absolute numbers it may...

Chances are better on the first items in the list, unfortunately.

Wow. I genuinely feel stupider for reading this. The lengths some people will go to justify their beliefs is really impressive. Assumptions built on assumptions and cemented by speculation and conjecture. What a word salad.

The earlier outbreaks mostly impacted medical professionals so that's puzzling. I think that once someone is lumped into the "patients" camp they lose all credibility no matter who they were before and status has no impact.

I'd estimate that 99% of alleged cases of psychosomatic illness are misdiagnosed. It possibly exists but it's extremely rare. Unfortunately there is zero accountability or oversight and most psychosomatic diagnoses are merely implied, lazily labeled without any effort or due diligence. But...

Everything comes down to funding. It's the only important factor here. If the money had been there, we would already have significant results, centers of expertise, a professional certifying board, experts with decades of meaningful experience. That and partnership with the patient community to...

It's what they believe, therefore it must be right. It's no more complicated than that, an article of faith. This is a group that will deny and reject everything, including a cure, for the rest of their lives. They will simply move the goalposts to saying they were focused on a subset and that...

This is getting to me. Why people with no stake or interest in the matter are even getting involved at all. What are they getting out of it? They're failing massively, are hated by the patient community for it and have actually managed something incredible: to regress an entire field of medical...

Seeing as they ignore 90% of the disease presentation and completely shut out the patient community, treat us with contempt and mock us openly, that's either a completely delusional claim or a massive dishonest one, most likely a combination of both. The psychosocial perspective could not be...

You get what you pay for. Chronic underfunding and absence of leadership guarantee this slow crawl. It's simply advancing at a pace comparable to what current funding allows. Current funding is on the order of 1-2% of what it should be so to make one year's worth of fully-funded research...

Merged thread ‘Havana syndrome’ symptoms of diplomats in Cuba are not mass hysteria Since no one is posting this yet I'm going to right ahead. Replace a few words and this argument could be applied to ME. The main arguments are the same, although the body of evidence is comparably small for...

I hate lies like this, such egregious dishonesty in an official capacity. The distance between the 2 "camps" could not be wider and the main obstacle is precisely that one camp advocates for patients while the other specifically and explicitly sabotages all efforts towards a solution. That...

And Michael Sharpe tweeted it twice. Live look at Sharpe being sad that people don't pay attention to his pathetic attempt at philosophy-without-thought about his medicine-without-morality:

Bit disappointing. I guess he means the current paradigm wrongly focused on fatigue, which is technically correct but needs clarification that it was an invalid reinterpretation from non-experts that only added confusion from the earlier research and was specifically bullied through against...

Experiencing both, I find that absurd. I know what they mean by that and even taking that framing into account doesn't make it any more meaningful. This is a classic case of wanting something to be true and being validated by nothing more than an absence of genuine understanding, the only thing...