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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.

596 now.

It's one of the risks of not having a CEO role. Individuals can push in their own favoured directions because no one is steering, and even if people can see a decision is ill-advised, they don't necessarily have the authority to veto it.

It's a very good letter, too.

It's a challenge, but that doesn't mean it can't be addressed. Same as all access issues: if the will is there to do it, a solution can be found. In some respects it's similar to board representation for people with learning or communication difficulties. They may need an advocate to support...

It baffles me that there isn't more interaction. We can be a tough crowd, but unlike some people on Xitter, we take responsibility for what we write. We don't just post provocative comments and then vanish, or try to organise pile-ons. Anyway, holding organisations to account makes them better...

Hopefully Audrey and Charlie will have some results to report next year. :)

Indeed. As an outsider, it looks as if it needs a review of its entire operation. Ideally, it would consult with members but also invite input from the wider ME/CFS community. Some of them might even join if they felt they could support the strategy and had more confidence in the trustees. I...