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I think the DSQ serves people with ME/CFS very badly. The list Andy quotes is far from PEM. It describes a mix of immediate fatiguability and PEF, and makes whatever is being described sound very mild. Where's the delay, the massive ramping up of all symptoms and the severe reduction in...

https://event.roseliassociates.com/me-cfs-research-roadmap/registration-2/ Next webinars: Less Studied Pathologies January 5, 2024 Less Studied Pathologies Circulation January 11, 2024 Circulation

Me too, especially since there was recent news in the UK about the shocking prevalence of senior male surgeons misusing their power over the careers of their junior female colleagues to force them into sex.

Ah, the old n = 1 gloating. I assume she also has your sympathy.

Fair point, I'm not excluding other conditions besides ME/CFS/PVFS/LC experiencing PEM. I don't have the medical knowledge or personal experience to do that. I'm just saying we have all 3 of PEM, PEF and exercise intolerance, , whereas some conditions only have one or two of that list.

Thanks Andy, I agree, and I intended to say that in my section you quoted. People with ME/CFS experience all three of PEM, PEF and exertion intolerance. They are different, and people with some other conditions may experience one or two of them but not all three.

I have been trying (unsuccessfully so far) to write an article about harms with GET, and as part of it have written the following:

Looking at the outcome data, the between group differences for most outcomes were statistically significant but surely can't be regarded as clinically significant. For example, on SF-36 physical functioning, the whole treatment group only moved up on average from 37.45 to 42.92 And in the...

Another one misusing the Cochrane review, PACE etc to justify exercise.

I have just written to Hilda with a couple of suggestions of doctors who treat pwME and who people here respect. I hope she can get one of them.

Oh no, not again. I hope it clears quickly this time. :(:hug:

There is some clarification of this in the latest response from Cochrane to out letters, posted here: https://www.s4me.info/threads/petition-s4me-2023-cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review.35109/page-23#post-508710

I assume this is a response to this section of our letter of 20th November So they are telling us that the complaint from the BPS people that led to over a year of meetings was at least in part based around their perception of conflicts of interest in the IAG. The fact that Hilda says the new...

How awful. I'm wondering whether it was COFFI as an organisation, rather than individuals, which made the complaint to Cochrane about the Exercise review that took so long to resolve. If so, they have probably been promised one of their members, or someone they approve of, as the new clinician...

I think it's all pretty much outside Hilda's control on timetables, details etc. The speed or lack of it seems to be down to when editors get around to talking to her and making decisions. So slower than a snail.

I've added it as a tag, but I suspect you mean the coloured labels that can be added to research threads to indicate whether they are protocol, hypothesis, trial report etc. I'll take your suggestion to the mod team.

So no news on the protocol timetable, and the new member of the IAG is to be a clinician working with pwME for 'balance'. They already have two on the IAG, Lily Chu and Peter Gladwell. The only other thing of note is that Cochrane, having gone through major reorganisation and cutbacks, is only...

I watched most of it, skipping through bits. It's based around Dr Asad Khan's experiences with Long Covid and interviews with Resia Pretorius and doctors and patients involved in apheresis treatment. Khan communicates well, though I fundamentally disagree with his final statement about...

I see Paul Garner recommends it. Enough said.

That is so awful. On a more minor note, an aromatherapist I went to once in the 1980's turned out to be a Hay fan and spent the aromatherapy session telling me I wasn't recovering from ME because I didn't want to get better. She tried to persuade me to read a book by Hay. Ugh.