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Nail on head. All those decades in existence, but the MEA currently looks amateurish. The chair seems to have contributed quite a lot to that impression, by being so out of touch with real lives and concerns that he doesn't even understand he's on a raft in the middle of the Pacific.

It wouldn't need to be super careful about comms if it actually understood the issues. Homeless charities don't have to take care not to publish disparaging, patronising and tone deaf editorials about unhoused people, because it would never occur to them to write them in the first place.

Honest question (I don't know the answer): would that matter in every study? I've variously shared houses and worked closely with people with bipolar disorder, schizophrenia and severe depression, and their symptoms couldn't seriously be confused with ME/CFS. I'm not sure why they'd always have...

Thanks for that, I hadn't been able to see the questions because I'm not an X member.

That's the one thing that needs saying. A consensus might be easier to achieve if it states that, at minimum, delayed-onset PEM is required for a definition of ME/CFS, and (as @Hutan points out) researchers should be clear how they determined its presence.

When it comes to infections, would it be more accurate to say ME/CFS is 'associated with' rather than 'triggered by' infection? There appears to be an association, possibly a strong one, but stating that one triggered the other suggests we understand the chain of events. We don't; we're making...

Yep. Offering reasonable adjustments includes not insisting people get in touch to request them every time, especially when particular impairments or difficulties are known to be common in the community an organisation serves. For people with ME/CFS, remote access to meetings should be offered...

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.