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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...

Yep. "OK boomer".

Last time it happened to me was my first Covid jab, the AstraZeneca. I felt great for nearly a week, and there didn't seem to be much limitation on what I could do. Then the symptoms gradually reverted to normal over two days. Second dose had a similar effect, but not quite as strong and not as...

Good luck with that, chaps!

I wonder about the almost-remissions. That could be something different, or maybe it's possible for the loop to be partially blocked? I had very good function during my remissions, but sometimes I'd still get the distinct pattern of symptoms I now know is PEM. I don't think the signal was ever...

100%. It's possible it's due to the release of something that shouldn't be there, but is in ME/CFS. But maybe it could also be due to something that should be there, and isn't in ME/CFS? I'm not severely affected, so I'm not speaking from experience—but those who are severely ill describe...

Yep, it is. At black-is-white level. I doubt it. Millions of people are deconditioned, yet they're healthy. Deconditioning's a result of ME/CFS, and it isn't a perpetuating factor. That much is apparent because as soon as people with fluctuating ME/CFS find themselves with increased activity...

I wonder how many of the molecules they class as exerkines could be released by reading a web page or having a light on in a room, though? That's enough to trigger PEM in some people with ME/CFS, and we've no reason to think it's different to the PEM triggered by a visit to a supermarket in a...

It sounds like a private limited company, though, rather than part of the public health system. If there's no prospect of future profit, their investors are likely to simply stop the funding. They would have to pay a salary to get the data prepared and a paper drafted, and there's no incentive...

It wouldn't show up people supported financially by their families, then, or who are too young to work or have reached pension age. Given the peak ages of onset—teenage years, when affected people are likely to remain with their parents, and middle age, when the loss of one income might not...

The ASA does seem to be one of the few regulators that actually works, at least for UK-based advertisers.

I don't know, but to me the striking thing is that most PEM isn't caused by exercise, or anything resembling it. It can be triggered that way, of course, but the overwhelming majority is caused by routine day to day activity, some of it very trivial. The lack of a link with significant exertion...

In an era of performative government, I'm not even sure that holds. The equation seems to be that the media demands Something is Done, governments Do Something (it doesn't matter what or how much it costs), which diverts the media's attention elsewhere for a while. Repeat in every challenging...

It wasn't so much the leadership. An organisation expelling people for asking reasonable questions should surely have the membership questioning what's going on and whether they're happy with it. A few well-targeted social media posts could potentially cause significant damage and division...