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I expect the likes of me will still be balancing on one leg, trying to struggle out of a wet costume behind the undersized towel my mam's holding up.

From the website: Good to hear that at least some of them were considered useful!

I don't think the terminology or the usage is at all fixed. What I describe as PEM is the routine reaction to previous activity. It's fairly predictable, though the mildness or severity of it is sometimes surprising; the symptom pattern varies with severity, but it's always within a familiar...

From @MSEsperanza: A general (maybe dumb) question about epidemiology: Are there chronic diseases that somehow protect from getting certain other diseases? Or maybe disease specific treatment that will protect you from getting other diseases? Sorry, not able to retrieve now, but recently saw...

I think it's possible to have both cock-up and conspiracy. It's unlikely that there was an intention to screw over patients, and very unlikely that the whole thing was planned with that end. But it is possible that patients were used as fodder to some extent in a BPS empire-building strategy...

I agree, I'm quite willing to believe Walitt really thought he could use fMRI machines to find the toadstone. And it doesn't surprise me that, millions of dollars later and having not found it, he felt a need to claim he'd caught a glimpse of it. What really disappoints me is how few have...

This is what grieves me so much about the waste. Care for chronically ill people needs reorganising from the ground up, to recognise that significant improvements to people's lives are possible if you stop spending money on pretending to do what you can't, and start spending it instead on...

The whole thing appears to have been a decades-long academic exercise. There's almost nothing in the publications about trying to find out what patients need or want. The entire focus is on measuring outcomes, and the sole objective is sustaining further study of measuring outcomes.

They're not. That's crucial in sustaining the model, because if people knew the risks of engaging with these programmes, they wouldn't touch them with ten-foot pole. It's presumably the reason an entire branch of the industry has sprung up to discredit those who've been harmed.

I was very disappointed at the lack of a bedtime story in the offer.

Guys, I think we could do at least as well between us for next 1 April! :rofl:

And it isolates the victims. My friend was a shy 12-year-old when she had to front up the most intimidating teacher in the school. Students of colour probably made up about 12% of the population, but as far as I know, no one else in our year group ever made a complaint. Having to endure it was...

That's interesting, because I've been wondering if one specific thing could potentially be assessed: the quality, clarity and usability of pacing and management advice given to newly-diagnosed patients. I've had briefings on everything from post-operative care to using mobility aids to...

In 1971, my friend asked me to go with her to see the deputy head. She was the only black pupil in some of our tutor groups, and wanted to complain about almost daily racism from other pupils. His response was: "Well of course what X said was wrong, but you know, if you complain about every...

In other words, this 'rehabilitation' is for people with illnesses, impairments, and living situations that can't, in many cases, be rehabilitated. So is the word rehabilitation is used to make it sound as if the service is doing something that can (unlike the ongoing support that some of them...

From @MSEsperanza: Probably not relevant for the main points of the discussion but the abstract only says the controls had mostly sleep disorders while the FND group had functional movement disorders (demarcated from "various neuropsychiatric disorders including the seizure subtype of...

But it could be simpler than that. Doctors could say there are a lot of things medicine doesn't yet understand, and this is one of them. Why is there one list of things where it's acceptable to admit lack of knowledge, and another where a story has to be concocted because it's not?

Sure, but in the world of proper medicine I get the impression they'd be under the auspices of the same clinic. The mode of delivery might be different, but it's usually managed by the same consultant(s) even if additional specialisms are needed for severely ill patients. I just worry these...

Are there other diseases where NHS clinics deem some of the sufferers too ill to accept as patients? I can't think of any examples at the moment, but maybe there are.

Good point, but there are no services for most pwME in the NHS. Once you've been diagnosed and gone through the pacing and management advice, that's it. Many long term patients have either never been referred to an ME clinic, or haven't attended one for years or decades. There is no...