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I can't speak for others, but I'd settle for powerful voices in the medical profession saying "We got this wrong. Let's try to do better." Doctors stepping up to be allies, the way they often are for other sick people, would change the picture in so many ways.

I'd be less furious if I thought that was a possibility! All too often people like this actually fail upwards. It's fine for scientists to be wrong, and it's not surprising if some of them try to present negative or inconclusive findings in the best light they can. But this is so much more...

But did you need a physio to supervise it? Or would the effort of needing to attend an appointment consume all your spare energy (plus some you didn't really have), so it was no longer available for an enjoyable activity? And put you at risk of ending up with PEM that wouldn't have occurred if...

I think one of the differences might be sleep. I haven't many memories of this because I got ill in my teens, but I do remember a couple of things—going to a family funeral when I was really unwell with bronchitis, and getting out of bed with a 'flu-like illness to sit an exam. Both times I went...

But you still couldn't make any kind of prediction, because PEM isn't a thing on its own. You might work out a way to predict theoretical energy capacity, but it would bear no relation to real life if it didn't take account of other symptoms. My energy capacity last night was actually okay...

Not hypnotic enough? Magic spell not working? But seriously, I wonder if they're confused about the subjective sense of fatigue and actual physical function? When I'm more active I experience noticeably less fatigue, and if I was asked about it without knowledge of the way the information...

I had some of this at work, there was always an underlying assumption that things will gradually get better. Of course for some people with LC things do tend to improve with time, but managers seem baffled when they don't. They can't conceive of not being able to control it and manage it and...

Given that I can't predict how able I'll be 20 minutes from now, I doubt it. I might have an attack of IBS, or my leg muscles might go dead, or I might feel too dizzy to stand up, or I might have retinal migraine in one of my eyes so that I can't see to read, or I might feel pretty much fine...

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...