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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...

From Wikipedia: 'The PVN is thought to mediate many diverse functions , including osmoregulation, appetite, wakefulness, stress responses, as well as the regulation of social behavior.[2][3][4]' https://en.wikipedia.org/wiki/Paraventricular_nucleus Osmoregulation stuck out to me...

Totally agree with this. The culture shift required is huge. I think a scientific breakthrough could cause that change though. The additional issue is that the problem both involves the negligent, possibly criminal actions of some NHS higher ups and exposes how baseless and dangerous the whole...

Something I've been wondering about in my anxious wait for the severe case studies: How likely is it that the treatment works as in the pilot for moderate pwME but doesn't help severe? Or to look at it another way, if the severe patients didnt respond, how likely would it be that the pilot...

Decent sample size here. Could this be something important?

Good thing he's not on the NHS board of directors or anything otherwise he could really do some damage with his mad agenda. Seriously that's quite scary. It really highlights the endless expansionism of the BPS project.

I am actually really relieved to hear things are progressing, even if segmentally. Hopefully we hear more soon.

Yes I assume Chris and Sonya have already explored this avenue. Hopefully with some success. But if they haven't they really should.

@Jonathan Edwards did you learn anything about the SequenceME funding situation from your recent meeting with Sonya?