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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...

Sports sunglasses tend to fit better and protect more against glare from above. I couldn't see in bright light even before I got ME, and used to get the type cricketers wear. The brands worn by sportspeople are really expensive, but there are cheaper copies of the styles that might do a good...

Intriguing! My initial response is that, if a person's symptoms are not rooted in disordered thinking, CBT by definition cannot work. But there are other difficult-to-blind therapies that might work, such as pacing. Maybe it would be a useful approach there?

Possibly, but my N=1 experience is that cold water swimming is in part a stimulant therapy—albeit one using drugs manufactured in your body. Swimming in a boring old corporation pool resulted in less PEM, possibly because it didn't make me tend to do more afterwards due to feeling so...

Real improvements aren't always the same as meaningful improvements, either. You shouldn't have to rely on statistical fudging to show the latter if you've set the outcomes properly, because they'll light up in that part of the cohort.

From @MSEsperanza: The Plos One cost-effectiveness study on PACE recently got referenced by Nick Brown: Posted on Bluesky: https://bsky.app/profile/did:plc:ofwg64mbej5dbdwxlrzfksxp/post/3lbeoiyqe7k2e

The onset of my B12 deficiency could have coincided with the development of two food intolerances, although it didn't make itself known until several years later. It was my doctor who suggested this. He said it can be years before symptoms appear in people who develop malabsorption, because...

And using creative ways to enable that representation, such as each trustee having their own small panel of patient advisors who have valuable knowledge and experience to contribute, but aren't able to serve themselves. There are numerous models that could be tested if the will to do it was...

Yes, good points. I had the same problems, but in my case it would have been counterproductive to have data. The cause of the crashes was that I was working, and there were a handful of periods when I wasn't really up to it. We could only take six months' sick leave on full pay, and as half pay...

I haven't cringed so much since I heard elderly family members trying to get the language right when talking about a person of colour, without the faintest inkling that their racial background was completely irrelevant to the anecdote anyway.

It's valuable work, but as a moderately affected person, I don't think I've ever had a crash that came as a surprise or that I couldn't explain. Many were self inflicted (e.g. doing something enjoyable), some happened because things went wrong (e.g. getting held up by a traffic accident when...

And at how many of them patients usually see a doctor when they attend, which is obviously critical if the NHS is to build an evidence base on how to manage people with ME/CFS and long Covid.

The fact they appear to think it's adequate is even more worrying than the original statement. They don't seem able to see that their messaging is on the level of well-off politicians who think poor people need to be taught budgeting.

I get the impression it's a closed process, so it's unlikely to be easy to find that out. Good idea, though.