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That's a good idea.

It would be great to see the paper, regardless, for NICE purposes.

I'd like to go, but I'm not sure I could manage the journey. Will there be videos or maybe livesteams?

Most of my young people (in my LGBT young writers group) like Skype or Facebook Messenger. So I'm sure there's a way to get them involved without them having to be there in person. You could organise virtual hangouts for most of it, and then the two in-person meetings at the beginning and end...

I wouldn't assume anything based on my early morning thoughts! Best to ask NICE directly, if in doubt.

With all due respect, your 'evidence' comprises swathes of links and text. It's not very accessible on a forum where many of us have brain fog (and I've just started getting terrible ocular migraines where it's like looking through a kaleidoscope). Rather than sending lots of links, it is...

I've read it through and it's definitely about running focus groups. I've asked a few more questions, as it reads like this is a job for a researcher, and hence, as Jo says, it would need ethical approval. But if it were more informal, then it might run on a different model and could be run by a...

I've no idea what this is. I'll try and found out. It may just be focus groups for those patients (children and the severely affected).

Just because something is published, does not necessarily make it true. Even peer-reviewed science isn't necessarily 'true' nor should it always be taken as fact. There can be flaws in methodology, or a lack of follow-up, or a failure to publish negative or null results. Also, we can be pretty...

I'm not sure I agree with their list. I've had shingles and a few gout-like attacks before, and the latter was much more painful.

Somatic has its own baggage. Especially because of the 'functional somatic syndromes'.

Can you read the right-hand text in detail? It looks like the first few letters of some of the words are chopped off. The man has been cut out and placed onto the sheet, so there's a white box around him that directly obscures the text. Since it's an image, I can't see that it would show up...

One thing I just noticed about your very helpful info sheet: the man overlaps the text on the right. Is there any way to fix that?

Thanks. I've been monitoring this discussion and will continue to do so. PEM is definitely on the list.

I've wondered that too. And if it's about faulty homoeostasis, that would explain why some interventions work for a while, then stop. I'm thinking sleep meds, primarily, which many patients rotate to maintain efficacy.

That may well be true too. That's the main study I remember because it was in the scoping responses especially (and this info is in the public domain so I can discuss it), but I know that other studies looking at misdiagnosis have been considered too.

Yes. NICE has flagged '40% misdiagnosis' from one UK study.