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I have been lucky enough to have care from loved ones the whole time i have been severe. I have eaten quite well (apart from when i was on a low histamine diet but that was mostly fresh healthy foods) for the five years I have been severe. My cognitive issues have been atrocious the whole time.

I've heard of it happening to doctors who believed BPS narratives about MECFS, but not to any prominent BPS psychologists or psychiatrists.

Perhaps if one of the BPS lot got MECFS and confidently attempted to cure themselves a la Garner but ended up bedbound, it would have a similar impact as this Norwegian chaps misadventure with sonic weaponry. But I suspect that like all doctors with MECFS their authority would instantly...

More fantasies about pwME being able to do whatever they want with the right adjustments. We will never get anywhere on the care side of things until people truly understand how disabling ME/CFS really is. It is the crux of the issue.

Despite knowing the history of MECFS and the past behavior of the psychobehavioural school, I was absolutely shocked how aggressive SW was in his bagering and legal threats towards Mendenhall. It is not the behavior of someone confident of their own legacy or in the quality of their work. If...

Oh you missed out the part where he also measures his sons nocturnal erection data and shares that as a comparison!

I watched the livestream of this guy taking magic mushrooms a few months back just because it sounded bizarre. He is a very strange man who seems genuinely terrified of aging. I wish just one of these people would chuck some of these longevity funds our way. Yes maybe we can set up our own...

Is it worth tagging or messaging Chris Ponting when you guys think you've found something significant he might want to look into? Ditto other researchers who are members here. Obviously scientists are very busy and we dont want to spam them with mentions but if it was used sparingly? Just...

So it looks like the psychobehavioural school have interfered in another case and muddied the waters with their bullshit then. This time one with profound geopolitical significance.

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?