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An ethical minefield, I think. Much better for such data collection to be done systematically by researchers.

This is the relevant rule, with the key part underlined: Rule 2: Privacy a) Careful disclosure and discussion of others' personal information Personal information of identifiable individuals (including information about contact details, health and family) may only be posted if it is either in...

From the supplementary material File 1 SF-36 PF scores in the 2 groups both showed something interesting - it looks like the small proportion of particpants who only attended 1 or 2 sessions improved significantly by about 20 points in the 6 months, but the ones who attended 3 or more sessions...

She was paid an honorarium in the first year or 2, then eventually after the long hiatus she got them to pay her some more in 2024. I guess it's difficult for her to work free because i don't think she has a salaried position, so relies on a mix of short contracts. A lot of the reviewers for...

Not sure whether this has been raised already. The results on CSF tests by Baraniuk might give some directions to follow up in blood...

I keep coming back to the passage in Martin Rücker's excellent article where he reveals the decision making at Cochrane that led to cancellation of the new review, and sacking of the IAG and writng group. The real reason, assuming it's correct is so shocking I focused on it in the weekly news...

We already referenced it in our harms letter to Cochrane in March 2024. They clearly ignored it along with all the other evidence we provided.

I was a bit puzzzled by it, but then I thought of it this way. MEAction is for some pwME probably their only ME/CFS community, and things like this enable those unable to do more active advocacy to participate in a simple community activity. I think of it a bit like our general chat threads...

Absolutely that's what they have done. Avoiding controversy from their point of view is keeping their own senior people like Paul Garner, Paul Glasziou, and Simon Wessely happy. As far as they are concerned, critical comments can be ignored and labelled as applying to a previous version, and...

All the updates and the letters between the S4ME committee and Cochrane are published in order on this thread: S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review I have also collected together all the items about the review since 2019 from the News in...

I've quoted your post onto the factsheet thread.

Petition now at 14,900, and some powerful heartfelt comments being added. I wish those GET supporters who persuaded Cochrane to act as they have, and the Cochrane board who made the decision would be forced to read them all.

I have just spotted that the Editorial note attached to the 2024 version of the Larun review has been edited today. Luckily I kept a copy of the previous version, so I'll post them both here and show the change in red Editorial note (19 December 2024): Larun L, Brurberg KG, Odgaard‐Jensen J...

A huge thank you to him for the article. He has really shown up well just how badly Cochrane have behaved, with more care for themselves than for those they purport to serve.

Can someone clarify for me the name of the publication of the German article and what sort of readership it has?

I get it sometimes still (age 75). Worst instance recently on trying a newly prescribed medication that set of bad restless legs lasting 8 hours. My mother who didn't have ME/CFS had it quite badly.

I think this section is key - following the masks controversy where the editor had to make a public apology: "According to people involved, it created a certain amount of conflict fatigue. "A foreseeable, yet again fierce, further conflict over a new ME/CFS review did not seem very attractive...

Some off topic posts have been moved here

I think that's an example where the target group has been excluded, so nothing can be deduced about them. How about if there is a mix of humans, apes, mice, camels and dolphins?

Edit: I haven't been able to read all the discussion. The PACE trial used the Oxford criteria for CFS, which only requires chronic disabling fatigue, and explicitly includes post viral fatigue, fatigue accompanied (or caused) by mild to moderate anxiety and/or depression, and idiopathic chronic...