2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

perhaps but I have seen no evidence for this argument.

 

This is assuming Prof White, Chalder, etc, were somehow experts in distinguishing between depression and what they view as chronic fatigue. I haven't seen much evidence to suggest that is the case.

 

And that is an anecdote @dave30th . Remember when Michael Buchanan came back to us and said that an eminent Cambridge statistician thought PACE was not too bad - so the deal's off? (Another anecdote.)

 

I don't think BMJ will run it because I mention a name - Chalmers - and that is not allowed. So by all means post it. The version sent was:


Dear Editor,


Your 27th January News article by Jacqui Wise (2025) gives a fair account of the disgraceful behaviour at Cochrane over the abandonment of the planned rewriting of the poor-quality Systematic Review on Exercise Therapy for ME/CFS. What it may not convey is why people within Cochrane and outside should be so deeply shocked. The international healthcare community needs to be aware of the implications of Hilda Bastian's (2025) statement on her blog, Absolutely Maybe, given as the title of this letter ('the project' being the rewriting).


It has been suggested that withdrawal of the review rewrite had to do with Covid-19. But lockdown did not interfere with searching online, or Zoom meetings. It has also been suggested that a rewrite was not indicated because there are no new data (there are). However, the need for a rewrite was not to handle new data, but to replace a review considered substandard by many, including a previous Cochrane Editor in Chief, David Tovey. As a past Cochrane Review author I am not persuaded finances and reorganisation justify abandoning the project on their own, especially when Cochrane's integrity was seen to hinge on it. Bastian showed true loyalty to patients in trying to keep the project alive, despite her own personal tragedy. She was let down.


I had sight of another version of this review, never published, which prompted writing to Iain Chalmers to express concern about conflicts of interests. Chalmers dismissed my concerns, but it is now clear they were well-founded.


This really is a shocking story. Whoever was responsible for the decision to block the project should be required to publicly explain their actions. Otherwise, Cochrane’s reputation is worthless.



Yours faithfully,


Jonathan Edwards
Emeritus Professor of Medicine
University College London


References

Bastian, H. (2025) Absolutely Maybe. https://absolutelymaybe.plos.org/20...cientific-society-and-community-values-clash/


Wise J. (2025) Chronic fatigue Syndrome. BMJ News 27th January https://www.bmj.com/content/bmj/388/bmj.r169.full.pdf

 

yes, I remember that very well!! and I think the true state of affairs is that statisticians are all over the map, like everyone else.

 

I'd never heard of it before it appeared in the papers, but immediately understood it.

But I'm from Yorkshire and we had competitions for keeping live ferrets up your trousers, so it's not surprising ferret-related idiom's mother's milk to me.

ETA
Sorry—it means scrambling to reverse a public position you were previously as committed to as your own children, because it's no longer advantageous to you.

Good post Peter, and thanks for the link.

 

Has somebody done a crosscomparison between CBT/GET and placebo in the Rituximab trials? My vague understanding is that those improvements surpassed those of CBT/GET in PACE? Do those that recommend CBT and GET also recommend a dosage of placebo by Øystein Fluge, if not why not? The mind must truely be playing some tricks if one is able to see that the one does nothing but still thinks the other is effective.

The Phase 2 trial clearly showed that you can have reported improvements without there being any efficacy in your treatment. How some people still go on to claim efficacy of a treatment when not even reported improvements show up in any meaningful way is beyond me.

 

*

Quality.

 

It’s quite simple: They don’t care about the efficacy of the treatment. All they care about is being the one to deliver (and profit on) the treatment, and being seen as an expert. They might believe that they care about helping, but they are unable or unwilling to acknowledge that they don’t help most of their patients.

 

Jo, can you explain this last clause of the first paragraph? What is the title of the letter? And what does the parenthetical mean?

 

Sorry David, I posted a tidied up version of the letter without the title by pasting from Word.
The title is

“Advocates of the intervention launched a full-on bid to try to stop the project. “

which gives you the meaning of the bit in parenthesis.

 

Good that other people at Cochrane are interviewed about this.

Perhaps that is something advocates can do: contact regional Cochrane offices or the people involved, piont to the problems with the ME/CFS review and ask if they could help?

 

Thank you for posting these extracts. What a great article, that even names names.

 

Interesting that the names named were the most obvious ones: Peter White, Michael Sharpe, Simon Wessely and Paul Garner, but does not include some of the other Cochrane insiders we were speculating about.

I don’t suppose the British press will pick up on this, unless George Monbiot does. Is someone able to forward the link to him.

 

The reporter says of Cochrane’s decision “If it was based on the assumption that this would avoid controversy, it was a grotesque misjudgement - and a reasonably foreseeable one, given the history of ME/CFS.”

This article illustrates how grotesque this misjudgement was if the article can get sufficient traction.