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Even if that were true, or meant anything... ...empowering how? And what knowledge? No one seems to understand long Covid any more than we do ME/CFS. What peace of mind? There's no treatment, and if you've got it, there's a pretty good chance you already know you do. In big, flashing...

I studied it for a time, but not for ME. I found it tiring and ultimately had to abandon it (I was working at the time, and even once a week it was too much on top of a job), but it was useful in that it helped me understand the postural differences I thought needed correcting were best left...

Hear hear. I've read it all now, and it's a very important contribution.

The council tax disregard is probably the least known about. My friend's father's probate grant was held up slightly by the insistence of his local council (who only found out he'd had dementia when she informed them of his death) of asking for a copy of his letter of diagnosis so they could...

From @MSEsperanza: @Jonathan Edwards referred to that paper a couple of times and most recently I think in relation to his The 'writing on the wall' hypothesis so thought a thread of its own could be worthwhile. References on S4ME see here...

From @MSEsperanza: Jekyll and Hyde: the transformation of HLA-B27 Abstract: HLA-B27 can adopt a homodimeric form. In spondyloarthritis, such aberrant expression of B27 may override a tissue-specific inhibition of major histocompatibility complex (MHC) class I-dependent events, leading to...

I'd have been tempted to bill him too, to let him show the audience what he is. After all, if he destroys his credibility himself, pwME won't be accused of abusive tactics. Again. :whistle:

When it comes to Nath, I'm still not sure whether it's arrogance or Stockholm syndrome. It seems rather clearer with Walitt.

Thank you for the explanation. Maybe DecodeME will offer a pointer? Though I suppose it might not necessarily be associated with changes to a specific gene, certain HLA profiles, etc...

Is there an anti-graffiti team to scrub it off?

I think you should publish it as a priority. High time everyone realised that how the doctor feels is what matters.

I haven't read it all yet, but like what I've managed so far. Yup.

There is that, but it's also common for people to overestimate their physical activity. We've probably all known folk who thought they were supremely fit and wore the shiny gym gear to prove it, even though they'd have improved their fitness much more by putting on a tatty fleece and stacking...

I guess it's possible that it's real, but social factors also come into it? Maybe people who report they are very active are more likely to mix in a series of different social groups, and are therefore at higher risk of repeat infections? That alone would raise the risk of Long Covid—and it...

It would be pretty damning of psychology if that were the worst of its problems, but it isn't. When it comes to energy limiting conditions, it's not a non-knowing. It's a false narrative. It's not an outdated state of affairs maintained by structural inertia, it's deliberate disinformation...

They've got the whole FND field to go at too.

Yep—though so many papers come out that it's quite hard to mentally shortlist the potentially promising ones. I do think the WASF3 finding ought to be pursued, so we know whether it looks like a priority for further investigation or it's an anomaly that can be ruled out.

This interests me too, as I think it's possible increased time upright might be an indicator of PEM in some of us. Yesterday, for instance, I had to make the trip to get my dinner out of the oven five times. I forgot the cutlery, then the bread, then my drink; then I dropped my knife on the...

That's interesting... Million dollar question, though: did it suggest the writing sessions within a cognitive behavioural therapy framework? The ones that lead to significant and sustained improvements? (I assume they don't involve writing sweary posts describing exactly where cognitive...

True. I did fundraising as part of my job, and it's really tough. At the moment, patients are finding it hard because they haven't got a simple, compelling story, and researchers are finding it hard because they haven't got a simple, compelling question. Both groups desperately need a hare to...