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I have read the report from the MEAction representative on the BACME conference. I think it's very worrying that BACME is so wedded to its dysregulation model and the consequent advice about gradual exposure to sensory and physical stimuli. It's clear the ME Action UK group are also very worried...

It might be worth just pointing to the NÌCE and CDC guidelines.

I'll make a note to mods to clarify the headings. For some research, no prefix label is probably the best option.

My PEM was much more clearly defined as crashes necessitating 1 to 2 weeks off work when my ME was relatively mild and I was still working. I could usually look back at the day(s) preceding them and see I had pushed myself to more activity taking me over my limit. The trigger- delay - PEM...

They have a statistician on the team who does this sort of analysis for questionnaire development.

When my daughter and I both had flu vaccination a a few years ago (before Covid), the GP told us we had different vaccines because of our age on the grounds that younger people would not have been exposed to one of the variants included in their vaccine, and it wasn't included for older people...

So throw a heap of statistical analyses at 'data' collected from large sets of often vague and uninterpretable questions and hey presto you get validated questionnaires. :( There's something very wrong with this approach, as we've seen only too well with questionnaires such as the Chalder...

Does this mean he's asking for the 2021 NICE guideline to be reviewed with a view to changing it, or is he talking about implementation? Any ideas?

Thanks @Amw66 for putting it so bluntly and clearly. It needs to be said.

I looked and only found such a post on a parody account. https://x.com/SharpeParody/status/1847309486165209458

These time lapses are extraordinary. Or deliberate. Slow torture.

It will if we post a copy on the forum. But I don't want to divert this thread further with Cochrane discussion that's better done on another thread.

I have just posted this on Hilda's talkpage:

This is the aspect I want Hilda and the Cochrane editors to take notice of. They are, as far as we know, refusing to reopen their earlier decision not to withdraw the Cochrane exercise review, and Hilda has said campaigning won't shift them. I think this public rebuke against ignoring legitimate...

We should certainly send the article to Cochrane.

I haven't ever seen 37.5 as standard. It's usually stated as 37.

:rofl: Thank you. I finally got it.

Also, as usual, Tyson claims that this is measuring something. No idea what. If you want to identify issues that are important to the patient, ask them, or give them open ended questions, don't steer their answers with long lists of vaguely worded tick box sentences.

Is this the same Dorothy Bishop I vaguely recall praising some bad BPS research?

A few comments on this explanation on the first page; my bolding: This seems to be based on the premise that clinical needs are primarily served by a series of visits to a rehab clinic, production of a care plan, then discharge back to the GP. Hence it lists 'clinical needs' as being things...