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Thanks bobbler, I'll start a thread on it. Edit: Thread here: UK NIHR: Post-acute infection syndromes, including long COVID and ME/CFS funding for feasibility of setting up platform for testing treatments, 2025

Discussion of PEM including whether it can be caused by stress, and what is meant by exertion, has been moved to the PEM discussion thread

Yes, I sit on the loo lid to when drying myself and dressing, and lean forward and rest my head on my folded arms, or lean sideways and rest my head on one arm on the side of the basin. Not for more than a minute of two though, as I really need to be back in bed.

Sometimes I have to let it go well over 100, especially when I have a shower. I don't wear my fitbit in the shower, but try to stop when sitting drying myself for a bit and rest my head forward on my arms if it goes over 120, waiting until it comes down below 100 if I can. It's all just trial...

Jem, I agree it's not the answer for everyone, as things other than physical activity can trigger PEM too. And I have the same problem with the Workwell 15 beats above resting heart rate. Mine also averages 70, and getting out of bed and being up for a minute or 2 takes it over 85. But I have...

No significant runny nose or significant sore throat for me in PEM.

Oh, ffs. Has he run out of vaguely medical people to quote that he now has to sink so low? The only good thing about this is it makes all Paul Garner's claims to medical credibility look ludicrous if he starts treating this person as an expert.

Thanks, @John_Lobb, that's a really good document. I'm glad there are people fighting to get this dreadful app changed. It's so awful to see app developers who haven't a clue about the quality of research or treatment inflicted on pwME being put in charge and paid by the UK government to run...

I don't. I was trying to make a different point. That the MEA should make it clear that it's not just about who believes what, it's about evidence. And that there is good evidence that ME/CFS is not psychobehavioural or psychiatric.

The latest Substack article from #ThereForME is provided by Long Covid Advocacy: The Tiger Who Came to Tea… and stayed The severity paradox in ME and Long Covid

Come to quack central for your pick'n'mix selection of treatment claims, each more outlandish than the last.

Again

Thanks, spoons going rusty, shrinking and rapidly running out.

Is it? We haven't seen it yet. But yes, I fully expect it to be a disaster.

Me too. I would defend the right of individual disabled people to use the term crip, but I don't want it applied to me.

I read that and immediately thought, ah yes, this was written by AI that's gone haywire here.

There are plenty of quacks in the UK too ripping off sick people with homeopathy, crystal healing, acupuncture and a host of other things. I guess the difference from the US is that most of them aren't doctors. I think there is a growing problem of UK universities that don't have medical...

For us elderly people, I think any reconditioning would need to follow the same sort of path as recommended for elderly people who are weak and prone to falls. As far as I know this involves things like seated leg and arm exercises, and walking, if necessary with a walker or a fixed bar to hold...

I see this is an undergrad thesis for a Bachelor degree, and would seem from the abstract to be an essay based on a limited range of existing research particularly related to metabolism, mitochondria and energy production.

Thank you, @DHagen for sharing your experience. Do you know whether they are doing a clinical trial on any of the treatments you are trying under their guidance? None of the treatments they have recommended for you have any clinical trial evidence as far as I know, though there is at least one...