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Our understanding, as we said in today's complaint, is they have broken their own rules.

Hilda revealed in one of her updates that Cochrane had spent over a year investigating a complaint from exercise for ME/CFS supporters. She also mentioned in that update some other complaints that had been investigated. We have had nothing official from Cochrane except standard 'we are still...

The S4ME committee has today submitted more complaints to the Cochrane Complaints process. The submission is posted in full over two posts here: S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review I won't copy it all here, since it's long. This is the...

To keep this thread focused on the thread topic, some posts have been moved to a new thread: Can we influence trial and review methodology, eg open-label trials with subjective primary outcomes?

Interesting idea. Maybe an open letter to Cochrane addressing the question of relying on subjective outcomes in open label trials and the flaw in the Grade system of only downgrading rather than rejecting such evidence in reviews.

15,281 signatures on the petition.

Two words that won't appear on the list: white and male. It's despicable, a horrific level of prejudice.

That's a really good article, @dave30th, thank you.

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.