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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.

They haven't spent much time listening to descriptions, then! People with attention deficit disorders don't get the buffering icon whenever they try to walk and talk at the same time. They don't get the comprehension gaps that look oddly like early-stage dementia. They don't have the...

I have been known to use a sock draped across the top of a pair sunglasses when the glare from the sun got too much. I've also flown back from holiday with the arms of my mam's cardi wrapped round my head and tied in a bulky knot on my forehead. :rofl: I was exhausted and couldn't cope with...

There are some aspects I haven't really seen explored elsewhere. It's hard to recall examples on demand (brain fog!), but for instance I've had falls because I tried to take two consecutive steps with the same leg. Works if you're hopping, but not when you're expecting a leg to move forward to...

Indeed. In which case, their concerns have been vindicated. The alarm bells went off for me as soon as I saw the article, never mind the non-apology that followed. Even if it takes a long time to play out, this is a key moment for the charity. When you reach one of those, the best thing to do...

Thank you, Adam, you've done an amazing job. I hadn't heard/seen some of that content before. The interview with Richard Horton is devastatingly effective in revealing the attitudes we've faced.

Been doing some idle wondering about what it would take to persuade me to rejoin. It's probably quite an ask... 1) Current chair steps down or is stepped down. 2) Board announces something along the lines of: a year-long consultation with members about the MEA's key priorities going...

It's like trying to hold back the tide, isn't it. Trouble is, a lot of this has much more to do with politics than medicine, and that makes it harder to counter. Some politics only works if there's someone to blame in difficult times, so they maintain a background narrative suggesting certain...