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Is it a problem that it doesn't cover PEM from sensory stimuli etc.? Wondering whether 'PEM avoidance' might be better, and would avoid the whole 'energy' thing.

That's a relief!

Power chairs look massively heavy and I wouldn't feel very safe having a couple of struggling guys try to hoick me up the stairs on top of one! Good chance of them dropping it.

I've just read that it was students who invited him, and I don't think they should be ashamed. They're just young and inexperienced.

I can understand antiquated university buildings not being geared up for a type of wheelchair that hadn't been invented when they were built but I'd like to think that they could at least have enabled him to take part via some kind of streaming, or have switched to a ground-floor venue.

Does the MEA need a CEO?

Certainly would. A big own-goal not to allow this and to include a question on whether or not the respondent was a current member. (I still think you have the best name on the forum, Fainbrog! Makes me smile every time I see it. :thumbup:)

Worth its own thread in the advocacy forum, to get people to notice it and take action?

Would you say that anything useful has come out of MERUK's funding so far? I'm not sure it has.

I stand corrected (seriously!). How do we get some movement on this? Have you approached the MEA with your view? Wondering how we can get our charities to do better overall.

I agree - I wish they'd kept sitting on their £3m and were now giving it to Sequence ME & Long Covid. There seems to have been a dearth of good projects to fund and there's no point spending money for the sake of it. Other disease charities probably aren't in that position.

:thumbup: Do you have the impression that they listen to non-members? I let my subscription lapse due to the kind of issues that you point out.

Does anyone get a chance to do that in a meaningful way?

Any thoughts, @Jonathan Edwards, @SNT Gatchaman? I don't know what would be involved in a training course but I wonder if this is something that the forum could feed into, like the factsheets (although of course we mustn't overload the committee - just wondering what scale of work would be...

Thanks for this very thoughtful analysis, @PeterW. One thing that struck me was that we don't have any very good metrics. You mentioned, for example, how many doctors the MEA had trained but what if they're training them badly? And they haven't spent their research money, but what if they're now...

Thanks! Impossible for a non-Norwegian speaker to get to the bottom of that!

@Utsikt (or any Norwegian person!) - Are ME-Fondet and the Norwegian ME Association the same thing, or is one part of the other? Someone has asked me and I don't know.

Same in the UK. Zero.

Very scary and depressing but I couldn't get a sense of how comparable Covid is with long-term smoking. Is there evidence that Covid persisting in the body is common, or that it does it for great lengths of time? Not wanting to minimise what it does on a short-term basis but just want to give...

Do you know why accumulated use makes the masks no longer any good? I've been curious about this for a while!