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It's pretty clear that this in large part due to the systemic discrimination and disinformation surrounding the disease so it's fair. We do not have the worst disease but we are certainly treated the worst. Even trivial health problems can grow to horrifying ends if nobody cares to fix them...

The committee report language sounds encouraging. It's still small steps relative to the need but as long as we still have to fight for the most basic recognition of existing at all, anything is better than the disastrous status quo.

The data is so bad I doubt this should be trusted. It's probably an artifact. It's very hard to have proper data on onset anyway since time from onset to diagnosis ranges from months to decades, made even worse by a subset that experiences slow decline with an undefined beginning and we can't...

Uhhhhhhhhhhhhhhhhhhhhhh.... no. Just. No.

Given the standard of "evidence" we have seen, 5% more would be counted as a success when you obfuscate it down to a binary improvement/no improvement. This is the standard we are dealing with: cherry-picking and selective reasoning. And most likely it's a mix anyway but nonetheless ANY...

It would be interesting to have a research effort focused exclusively on the fluctuating aspect. To some degree, they must match with something in the body, a cycle that can at least explain what is rising and falling. If we had the funding... we can provide the leadership where there is...

Echoing Reagan, uh? Bold move. "Evidence says no but our hearts say yes". Picking and choosing anecdotes is a really big tell that something's wrong with the whole process.

That does not inspire confidence in all other aspects of rehabilitation programmes, that even professionals cannot tell the difference.

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...