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I do get the impression that she really means well here. Some of the bad language comes from the Guardian and not her, or maybe tries too hard to be optimistic about a little improvement to a horrible quality of life. I get the frustration but people are being way too harsh on her. It's not...

Of course, a purely administrative thing with zero real-life benefits in 99%+ of cases and an insignificant, and expensive and difficult to achieve, impact on the few who can manage it. Very fitting response. It symbolizes very aptly how chronic illness is systematically disrespected and...

Sometime I kind of just realized, that looking at how medicine has been treating this with a "biomarker + tests + effective treatments or bust" mentality, where even with LC going soon on 5 years there has been exactly zero change in attitudes, everything is hanging on a revolutionary...

This has been happening for a few years. Sharpe and at least one more similar I think of, all they could manage is some lame quote as a comment on an article. Still, where it counts they're just as influential as ever so it doesn't bother them (yet). But it is notable that I haven't seen much...

Well ain't this all a big mess of confusion and holistic pseudoscience. Ultimately irrelevant since only a research breakthrough will make any difference, but damn frustrating. People want to tell their story, even when they insist it's just their story, it all gets distorted back to the...

The Internet archive has been the target of a massive hack in recent days and some of the copies aren't functioning well.

Yeah that too. I can get it even if I barely challenged my muscles. To me it feels exactly like the same thing when you train very hard, like doing a max repetition lifting weights. Except it happens from absolutely minimal effort, but even worse is that it can happen to muscles that were barely...

It does feel like it's this constant overshooting. It should take tiny adjustments to balance it all out, but instead movements constantly overshoot back and forth. Like some delayed reaction that just gets us always behind because by the time you get feedback from a first movement, you're...

Yeah that, I didn't mention but I go back and forth on those balance exercises being a bit easier, then sometimes I'm so wobbly that I can barely do the very first part. A few times, up to a few days, it was actually easy. It's so easy to confuse this as progress, then BAM it goes back down, and...

An impressive display of the extreme biases needed to promote psychosomatic ideology. The drop-out rate for follow-up (75%) alone that they use to conclude a 78% spontaneous recovery would be impressive in itself, but the fact that they define 'somatization' as having symptoms and seeking...

Even people dying don't seem to matter. Early in the pandemic, some experts scoffed at the notion that 10K people would die from COVID. Officially we're at 7M+ worldwide, probably closer to the 20M range. In the US 10K is how many die every two months now. It's completely memory-holed and the...

Unfortunately, we challenge people too much. Which is what's needed, but so far it has mostly ended up poorly. Most researchers don't seem to want to be challenged when dealing with patients. They expect a teacher-students type of thing, where they talk and we nod in unison and thank them for...

Absolutely weird to put out a slogan on an academic press release. This has nothing to do with the problem, but it's the conclusion they started with. It's actually creepy as hell considering how published this garbage. Like some tobacco company pushing their products in the same press releases...

:sick::sick::sick::wtf: Theirs has been the only approach for decades. In the report, it's explicitly why Maeve died, even though it falls short of saying it. No one who is in the right ever has to lie half as hard as this. What nonsense to speak of social isolation and sensory deprivation as...

My annoyance at this framing of a problem of definition is on its way to blow a gasket. It's not a problem of definition. There is no problem with definition. They mean the pathophysiology. They want to know what is the biological process. Because medicine is 99% about biology and physiology...

Obviously, those things did not exist before 5 years ago. Nope. All brand new post-2020 problems. Not like the 80s and 90s, where everyone had healthy habits and ate natural well-balanced diets. It's actually funny that they don't mention smoking because it is pretty much on the way to...

They can't acsept that.

They excluded ME/CFS in a study of fatigue. I mean we did spend decades trying to get through to them that ME/CFS isn't 'just' fatigue but this is frankly ridiculous. You can't call them systematic reviews if they're not systematic. Really, that's evidence-based medicine in a nutshell...

Really odd that the report does not at least include something, anything, about the fact that the updated guideline was explicitly rejected by the professional associations and the health care system subsequently refused to implement it. They can promise all they want about something to be...

Something I can't imagine isn't relevant to the ME puzzle, unless it's a rare issue and I'm one of the few experiencing it. For the last 6 months or so, I've been able to do light exercises. 20 min walks, low (15 lbs) weight lifting and a few other light exercises. One thing that's noticeable...