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Some of this could potentially be good. I'm an example of a disabled person who had to give up work because of the benefits system: I could do part time self employed work on short contracts for about four or five months, then the accrued PEM meant I'd have to take three or four months off. For...

The concerns about 5-HTP seem to be that it might actually work. It can increase serotonin levels, which may or may not be desirable. Might be worth consulting the GP first, @JemPD, specially if you've tried antidepressants in the past and found they didn't suit you. It could have been the...

Maybe because the MEA is treating it as valid? If the charity has decided to steamroller over any objections, the advocates won't want to risk missing the opportunity. If at some point the AGM were to be declared invalid, it will have to be run again (with all the business and any motions) anyway.

Thank you! I struggle a bit with videos (I rarely even watch TV), so to have a summary is a real gift.

He could (and probably has already) carried out much the same role in various positions in the organisation. He wouldn't lose influence, or become a less authoritative voice in the wider community, by not being a trustee.

They could. But it's not an easy course, either for the individuals personally or for the organisation. You have to be sure you have a plan in place for any fallout, and that all trustees really are committed to it. The motion proposed for the AGM offers a less incendiary way to solve the...

It doesn't mean he'd be out of the organisation, though. If Charles himself wants to continue, and trustees and staff do too (which seems likely, given his enormous contribution) a different role could be created. They could offer him a post as paid medical advisor if they wanted. The point is...

If you want a section on challenges to the BPS ideology, Brian Hughes' The Science Bit is a good place to look. The site also has some interesting thoughts on scientific literacy generally. https://thesciencebit.net/

There's usually some detail on the fundraiser, though it's often only a name—"matched by the Such-and-Such Foundation". It's probably possible to learn a bit more about Such-and-Such if you look it up. Not quite. I think it means that $40K was available to ME/CFS research if the fundraising...

Exciting! It's good to see a team being really inventive and squeezing maximum value from small pots of money.

They might review it and decide no action is necessary. But if the trustees are concerned about recent events, they might see it as an opportunity to initiate change. It's a great opportunity, especially if they compare the MEA model to those of comparable charities—it could help navigate some...

Thanks so much, that's really helpful!

As that statement excludes recovery via "changes in thinking or behavioural patterns or human interaction", very few should be able to pass the criteria. Those who do are likely to have recovered for reasons unconnected to any therapy.

Probably just me being dim, but I don't really understand the exhaustion idea. Are the T cells not doing what they're supposed to, or not doing enough of it? Descriptions of immune cells seem to present most of them as transient entities that are being replaced all the time anyway.

Jonathan's written in various threads about the experience of long Covid, saying he had to limit activity during an extended recovery period, but he still didn't think he got PEM. It would be interesting to hear more about post-viral fatigue—or recovery from any illness or treatment—that limits...

Seems as if everyone is colourblind, or they agree with the party line, or they know this is how things work round here and no one below the office of chair can do anything about it. I've worked in a situation like the latter, and it's deeply problematic.

I still think it's a decent enough call that it could do with being excluded. Trouble is, until you find what could be a completely novel genetic mutation OR a disease process that causes secondary channelopathy, it's not easy to exclude. Some people with periodic paralysis appear to have...

I imagine you could find statistics linking autism to all sorts of illnesses and attributes, because it's common enough to co-occur with all sorts of illnesses and attributes. It could just as well be chance.

Meta and antimeta. ...I'll get my coat.

I don't know how accurately the effect it has on me would show up in their measures. If it works at all, the reduction in pain and fatigue is barn door obvious; there's also a distinctive change in the way muscles feel. Those outcomes are difficult to measure objectively though. If this trial...