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That's great news. A government department that listens, too. Feels as if we ought to organise a flag day just to celebrate that!

For me (moderately ill) I often wake up with it the day after exertion. There appears to be some kind of relationship with sleep, but I don't know how common it is or whether it means anything. For instance, overactivity can cause so much overstimulation that I can't sleep at all. On Wednesday...

It's all great news, but that's fantastic to hear.

Maybe there are physicians who're interested, but their involvement is less public? There are good scientists, but I imagine they're doing full time+ jobs. That'd mean they're less able to engage online.

Yes, I think so. Maybe he's just missed the point a bit? He says he understood as far back as 2010 that the term ME/CFS is a placeholder for something we're not yet able to name, which is part of what you're suggesting. But not everyone understood that. Worse still, some neither understand...

Complete cobblers, then. Nobody has the faintest idea, and shouldn't be pretending they do. :rolleyes:

Part of my drive to sit resembles having very low blood sugar. The weakness, dizziness, spaciness, and that strange feeling that you can't quite focus your vision are all there. Having to stand on the spot also makes me shaky, panicky, and incoherent—I can't make sounds that even resemble...

He appears to have a lot of influence, though, if no one's willing to deal with him. I suppose it's possible the whole organisation is unable to see that there's a problem, in which case there's a huge problem.

I had dementia with a deficiency too, it was really frightening. Luckily I got a lot of my cognitive capacity back, but my memory's been much poorer since.

No worries, I can write a lot of verbiage and still be as clear as mud! :D I sort of understand why the MEA made this mistake, because I've seen similar things happen. It should be obvious that a planned action is seriously misjudged, but nobody can see it because they're stuck in their own...

That's not what I said, though. I was suggesting social media managers usually respond by making a post telling the commenters that they were listening; then, once the process has been discussed and decided, telling them what's going to happen next. There's no earthly need to respond to them...

It is, in theory at least, where MEA engages with some of its client base. Disability charities should offer multiple points of access, as it means as many needs are catered for as possible. Social media's especially useful for people who wouldn't have the capacity to draft an email laying out...

I don't understand the approach. If something turns into a major discussion point, social media managers could post a boilerplate reply thanking contributors (assuming they weren't abusive) and saying that responses are being collated for discussion—followed later by an official post letting...

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...