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Maybe it's a bit like the Book of Judith, it depends which tradition you subscribe to. :whistle:

That's an interesting point. There's also something about unfamiliar sensory environments being much more draining than familiar ones.

This. Almost 60 years ago, in an infant school assembly, our head teacher said "It's far more powerful to believe a thing than it is to know it". I remembered because I didn't understand it then. It's hard for patients to change the minds of HCPs, at least when there's no ongoing...

I hope this gets quoted back at whoever described people signing a measured, cogently argued letter as "baying for blood". It's genuinely puzzling that none of them seem to know how to communicate in a professional manner. People who deal with the public by insulting or patronising them don't...

Going by the testimony of the majority, it doesn't. It might appear to, as people are only monitored for a short period in trials and most of them are at the mildest end of the spectrum. But some fluctuations in capacity occur over periods of months and years, as well as hours, days and weeks...

100%. And it's a normal, positive response. Given half the chance, people with ME/CFS want to work and learn and volunteer. We want to spend time with our families and friends, and do enjoyable recreational things. It's the reason we keep trying to shoehorn bits of extra activity into whatever...

Yep. And they have no way of knowing they're in that subgroup until they find out through experience. For some, that'll be too late. We could really do with some research on this. What proportion of people with ME/CFS only experience worsening, and what proportion tend to recover some of their...

I imagine that at the very least, most of us have to push against some boundaries, some of the time. If nothing else, boundaries change. Also, you'd need to have full care support—or be astonishingly lucky—not to exceed a PEM threshold for months or years on end, because things go wrong...

My experience is that springier suspension isn't better, it's worse. Much worse. I avoid using mobility scooters because they have better suspension than wheelchairs. Going over bumps tosses my head around all over the place, and I end up dizzy and with a sore neck. I also find them...

Particularly negative results, I'd say. It may save someone else wasting time on the same approach. Also, if the methods and results were published, someone else might see an issue with the way samples were taken or processed (or whatever) and repeat the experiment with that corrected. If...

I used to donate, but they don't publish enough of the work they've done for my liking. I'd be happy to donate to Chris's lab, though, now I know I can.

Some of the authors also published Stem Cell Therapy for Men's Vitality, and it similarly has great promise but there is too little research. Maybe they Googled 'unsolved challenges in medicine' and took it from there.

Only that moving house demonstrated just how much noise comes in via windows and doors. Closed windows and doors, I mean. I moved to a new-build with more modern fittings, and the difference was really surprising. If I shut my old back door, it reduced how much I could hear my adult neighbours...

Yeah, I agree. The time may come, but it'll probably be clear when it does. For instance, if charities need to join up because there's a treatment or a service they could offer if they consolidated their resources. At the moment, it's more about advice, advocacy, and fending off the crap. There...

That's true, but maybe what's being highlighted is a slightly different thing. The trials we've seen so far (including the BPS ones) have focused on reporting slight improvements in individual symptoms—claimed them as treatments in some cases—when they have little or no effect on the overall...

He appears to have no idea. No idea how ME/CFS affects some people. No idea what other, less privileged lives are like. No idea how to communicate ideas. No idea how to manage public relations. No idea how precarious the moment is in the battle against BPS ideology. No idea how many...

Yes, and it's probably not needed. 'We see a focus on symptoms rather than disability.'

I wonder how much the biopsychosocial model has contributed to this in ME/CFS. There's no incentive at all for those researchers to have measured disability because of the fact that even people who scored higher post-treatment were not returning to their normal lives. It would completely...

I had another thought about hats. I have two from a company called Heritage Traditions. I bought them when they were on sale and they're now my favourite hats, and although they have a peak everything about them is soft. You could actually lie on your side and sleep in them, the peak would just...

Test BCG vs Covid vaccine, and inject them in the bum? Both cohorts would likely get some local reaction, and it's very hard to get a detailed look at your own derrière.