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ETA: Sorry, I started writing this some time ago in response to earlier posts, but it looks well out of sequence now! I agree very much with the approach, but for the moment all we have are these short-term management courses. There don't seem to be any plans to monitor people beyond that...

Galway

At least there's some observable pathology. In ME, we've no idea what the pathology looks like; until we do, we can't even know whether or not we've succeeded in creating a model.

I wonder if this might usefully be expanded to include peaks of onset? The 'most common in people between the ages of 40-60 years' is true from the point of view of epidemiology, but it always looks a bit odd to anyone familiar with ME/CFS. They're more used to thinking and talking about age at...

There are, but it's not an unusual situation. A patient or participant can be taken through a lengthy diagnostic process, an answer can be found, and they can then be asked if they want to know what it is. Obviously I don't know how this study will handle it, but I've been in that situation...

My ten bob's on "because we always do". I went through my working life wondering why people did what they did, the way that they did. It took me 20 years to learn not say "it would be quicker/easier/make more sense to...", because they wouldn't want to know that. I never did quite master "but...

And therefore quite expensive to employ. Universities are trying to cut costs, I know three people who've been offered early retirement packages. I think they're between ages 59 - 63.

And we're putting up with it, instead of marching through the streets.

The analysis sounds like a specific panel: People can opt out of the remaining genetic material being stored for future research, but I suspect they'd need to read the consent form very carefully to make sure they do: This is unclear, and I'd probably ask more about it if I were taking...

I'd be surprised, specially as it's such a small cohort and there's going to be data from a much bigger one (albeit only adults) available to researchers soon. There's a more obvious motive: a drug company has an expensive product for which they need to recover their investment, but only a...

Yep! But according to the optometrist, some people just do. I noticed it 20-odd years ago, but I'm not sure whether it changed or I just hadn't spotted it before.

Me too! That's part of it, but it also feels exclusionary because most people won't know what it means—it even stumps me sometimes because it's so unusual to hear it. Saying P-E-M at least makes it clear it's an abbreviation, not a word.

Disinformation is only 'politically vital' to those with certain political affiliations. You could make an interesting film about that.

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...