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I think, given the complexity of many genetic associations with disease, the difficulty isn't in the genetic testing, but in finding someone who can usefully interpret the resulting data. And, even if you do find someone with useful expertise, that expertise probably only covers a small number...

A nice summary, Peter. Other than there appears to have been a decision that staff and Cochrane officers should not (must not?) individually respond to emails and queries about the Larun et al review, that it all needed to be managed centrally. For at least a year we have been hearing that...

It will be worth keeping an eye on how long the RACGP takes to update the citation for the Larun et al review in this clinical guidance supporting the use of exercise. It's still currently linking to the 2019 version.

We have had some success in getting clinical guidance in NZ to refer to the NICE Guidelines. Even then, when authorities want to refer to 'differing views about the best treatment', the Larun et al review gets wheeled out. There are definitely parts of the world where Cochrane is very...

Linking to this resource: Video: How dietitians and the wider MDT can help people with ME/CFS, Helen Baxter of The 25% ME Group

I wonder that too, the timing seems to fit. But I did also wonder if I was being too self-centred, if it wasn't all about us. Maybe Cochrane has a portfolio of festering stuff-ups, not just the ME/CFS one? And, Cochrane have always been about the reviewers, or at least the favoured reviewers...

I think there's an issue with Cochrane being both a journal publisher and a 'provider of 'gold standard' medical advice'. If a review is published and then deemed to be not only not gold standard medical advice but a potential source of harm etc, it can be withdrawn as a Cochrane review, but it...

Another petition update: How a review published in 2019 became a review published in 2024 24 Dec 2024 2019 or 2024? The observant among you will have noticed that we are now calling for the Cochrane 2019/2024 review (rather than the 2019 review) to be withdrawn. The reason for the change is...

Good on you for caring enough to do something @cybergreen. I think though that by nominating alternative disease names, you will limit the number of people who support the petition. If you asked people to agree that CFS is a bad name that should not be used, I think a lot of people would agree...

We've been contemplating the possibility of legal action on another thread and feeling rather pessimistic about that for now. I think complaints based on the Helsinki Declaration and national research standards might get us somewhere in the short term though. When there is an egregiously bad...

That's an interesting video, about 30 minutes. Lots of information on a range of topics.

Thanks to @bicentennial for the heads up about this. Here's a link to the Declaration of Helsinki, published by the World Medical Association https://www.wma.net/policies-post/wma-declaration-of-helsinki/

https://www.nature.com/articles/s41591-024-03433-5 The updated Declaration of Helsinki empowers ethics committees to require community engagement and equitable partnerships 1964 saw the US Surgeon General report that smoking is a health hazard, the UK abolish the death penalty for murder, and...

We've had a query about whether the original link to the petition still works, now that the title has been changed (with the addition of '2024'). It does still work - here's the link again: Petition link: https://chng.it/zTZ7vX9Czd

I don't think we have listed MERespite on our list of ME/CFS organisations yet. Good to hear more about them @hibsicuswahine. I'll add them to our list.

Incorporating psychological interventions into treatment plans to alleviate distress associated with cognitive decline is a reasonable thing to do, so long as there is a need and the patient wants the interventions. Dealing with persistent symptoms and all the life changes associated with them...

Neurasthenia in CCMD (Chinese Classification of Mental Disorders), 2024, Maniscalco 'somatic depression'

Surprisingly, we don't have a thread for news from China yet

Interesting

I think my pick of the US national organisations right now would be Solve ME/CFS for the reasons you say, despite my considerable concerns about some of the research that they have funded. Emily and the team there supported our Cochrane campaign, indicating that they understand those issues and...