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Anyone got an archive version of this?

Agreed, the paper the other day claiming severe pwME could have an 'elevated experience of life' and still fulfill their 'potential' made steam shoot out of my ears.

Given we have recently seen how active SW still is in threatening people who write about PACE, I am wondering if the MRC are being lobbied heavily by BPS interests behind the scenes. The MRC spending £20m on SequenceME would have been a huge legitimising moment for biomedical MECFS research...

I wonder how many other authors have been cowed by legal threats in this way. Very disappointing. For f-ks sake.

Yes I think a lot of media and health service messaging gaslights people into thinking they are unhealthy because they don't do intense exercise 4 times a week. Looking back I was probably in better shape than your average office worker when mild, but was convinced I was 'unfit' - mostly...

So many important clues are I think, like whatever is going on that makes me get sick from watching intense TV shows now

Good lord, this is offensive. I definitely do not possess the level of function for an 'elevated experience of life'. This illness is a living nightmare. Maybe you could make that argument for mild pwME - if I'd known and had accomodations made for me perhaps I could have had a good life. But...

I think if we get a proper clinical service that does research it should be a priority to investigate this

I did them when I had first become severe and think about how intense some of the later exercises were and how they made me feel, and I wonder if I would have recovered more capacity if not for doing them. Stasis were all over the long covid space in 2021. I did a group online session with them...

I did stasis for 6+ months when I first became severe. Made no difference and I think the more intense exercises may have made my symtoms flare.

My muscles feel extremely tense all the time, especially in PEM. I can't really relax them without effort. Like they are naturally just tense now. Could this have something to do with that?

This is a very good point- it would be so ironic if a vital clue was missed because doctors had been confidently stating it was all deconditioning when pwME for some reason don't become as deconditioned as they would br expected to.

Whoever do we know that might do such a thing?

To expand, it would explain not just the PEM triggers but the strange PEM symptoms. Light sound, stress and even smell intolerance, temperature dysregulation, other stuff that I literally can't put into words. The way stuff affects you just completely  wrong. Like watching a stressful film and...

Could you expand on that?

This would explain a lot of the more puzzling PEM triggers that esp. severe pwME get.

I know you don't have a preferred theory per se, but what possible mechinisms do you find particularly interesting right now?

No I agree, but I don't know if we can totally abandon the concepts without being unable to explain pacing and PEM.

How do we explain PEM and pacing without them?

I know someone who has an incredibly difficult time battling the CHC for care. I won't go into details but the CHC people have been extremely unpleasant and duplicitous in trying to reduce or take away this persons care, and refuse to provide anything like the amount they really need. It's...