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One more, and we'll have 3704 x Nelson. :D ETA: Completely inaccurate. Never, ever trust my maths. :rofl:

Exactly. If that proportion of any profession were shown to have ME/CFS, (a) there'd be an enormous amount of interest, and (b) the profession would be in crisis with so many unable to work.

Funny, though, that there's been no trial of the reliability, accuracy, or usefulness of questionnaires, yet they can be assumed to be a valid clinical tool.

No, I say P-E-M, and most of the people I know do. That might be the reason I think it's the norm and 'pem' sounds really weird, though! :D

If WE&ME is on Twitter/X, I wonder if they'd be willing to draw the attention of Österreichische Gesellschaft Für ME/CFS to the petition? They might even know someone from that group personally. ETA: Sorry, I'm not on Twitter myself, or I'd do it!

There's also the issue of academics being expected to publish ever more papers, ever more frequently. Why? Surely they should be judged on the quality of their research, collaboration, teaching, etc, not how well they can churn out content-free guff that not only adds nothing to the...

That's an interesting point, actually. The questionnaire seems to acknowledge that pwME might do tasks more slowly than a healthy person, but that doesn't begin to communicate the reality of it. It often takes me three days to wash the floor of my open plan sitting room/kitchen, but it's never...

I can see the argument for that being justifiable in relation to sources (though I'm not sure I necessarily agree), but there's no harm in recommending that journalists use ME/CFS in their own references to it even if their article includes direct quotes from a patient who uses ME or CFS.

Sorry for the duplicate post, I did a search before adding it but obviously picked the wrong terms.

Exactly, that's what I meant about using them in other contexts. More than one GP at our surgery has suggested using them for activity and heart rate monitoring, and the afib alerts I kept getting for a few months—which it would be easy to be sceptical about in consumer electronics—were taken...

https://www.nature.com/articles/s41586-024-07501-1 Also reported in The Guardian (UK): https://www.theguardian.com/society/article/2024/jun/05/bowel-disease-hope-researchers-find-biological-pathway

Ohhhh, they're well worth reading! There are a lot of them, and it will probably make most sense if you read them in date order as and when you have the energy. https://thesciencebit.net/category/me-cfs/

I really like it too. As @ME/CFS Skeptic has added a heading examples of excellent reporting, I wonder if next to it there should be a category of (and I can't think of the right way phrase this) reporting angles likely to add to patient stigma? Under that, we could highlight the confusion...

I'm suspicious about the motives behind the assertion that technology isn't acceptable to the NHS because of accuracy, privacy, or whatever. Not least because it seems perfectly acceptable in other contexts. Thing is, results from a step counter are so much harder to fudge than responses to...

They probably understand that if you keep using the same system, it effectively is accurate. The scores don't need to be absolute, they only need to show your numbers and your trends.

Why categorise less than 30 minutes' activity as an adaptation? Nobody would call it that or understand it as such. Why not just 'no'? As for the focusing on a cognitive task, it's a bit tone deaf given the number of neurodivergent people who'll have to fill this in. Some of them will always...

Thanks, that was what I was thinking. If people are told this, any who have enough experience to be aware they'd only received a smallish dose might be less inclined to question it or base expectations on it. Similarly, any who spent the next two hours wearing out the carpet leading to the...

Yep. The fact that doing activity has disproportionate consequences is pretty much a definition of ME.

This is too confusing to parse. Adaptations could be considered separately at the beginning. As it is, I'd have to indicate repeatedly that my ability to do both essential and elective activities is always conditional on using a powered wheelchair, a wetroom with a shower chair, and a raised...

I don't think I was really aware it existed. Maybe the first thing to do is to see if the wiki will accept a note saying the page is in the process of being updated and reorganised? That might make it look a bit more credible, and give a hint to journalists that it's worth exploring other...