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

Thanks both, that was it.

I am floating the idea of writing to the BMJ Editor thus or some such:

Edit: I am updating this draft as comments come in so that people do not have to read several drafts.


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

27th January 2025

Dear Editor,
The News article by Jacqui Wise (2025) today 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.

It has been suggested that the 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. But the rewrite was not designed to handle new data. It was designed to replace a review identified as substandard by many, including the then Cochrane Editor in Chief, David Tovey. Having authored a review I am not persuaded that finances and reorganisation justify closing the project down on their own, especially when Cochrane's integrity was seen to hinge on it. The only legitimate reason for delay would have been Hilda Bastian’s own personal tragedy, for which she has my greatest sympathy. Bastian has shown true loyalty to the patients.

I had sight of another version of the review, never published, which prompted my writing to Iain Chalmers to express my concern about conflicts of interests. Chalmers dismissed my concerns, but it is now very clear that 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 truly


Jonathan Edwards etc.

Reference

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

Wise J. (2025) Chronic fatigue syndrome: Outcry over Cochrane decision to abandon review of exercise therapy. BMJ News 27th January. https://www.bmj.com/content/bmj/388/bmj.r169.full.pdf

 

Thank you, @Jonathan Edwards, that's excellent.

I don't know if you want comments, but I was a bit confused about the title, because I didn't know who was being quoted (I see it's from the BMJ Wise article announcing the scandal, your second reference). If your letter isn't something that would appear attached to the news piece, I wonder whether a title that summarises your view and identifies the topic might be preferable: 'Cochrane's failures over its ME/CFS review are shameful' or something.

I worry that this part gives the impression that the delay was legitimate, but presumably you mean that only part of the delay could have legitimately been ascribed to Hilda's situation (which was, indeed, truly awful).

 

Well I guess I could add that in as another dud since cuts in funding would not (or should not) have affected the project once set up. But it would be easier for them to quibble. The other two suggestions were clearly bogus. And I want to be short and snappy.

 

It's from the second reference in the text, which is Bastian. Maybe this is clearer:

The international healthcare community needs to be aware of the implications of the statement made by Hilda Bastian (2025) on her blog, Absolutely Maybe, given as the title of this letter.

Edit: It may confuse but I have edited that in to the draft so that I don't have to keep copying it.

 

Do be as critical as you can. I want it to be as crisp as possible, if I can get around to the sending process.

 

I think this language is too intense for something you want BMJ to publish.

 

My concern is that when people read websites or magazines, they skim, and if your title doesn't summarise what you say in your letter, a huge proportion of the readership is unlikely to ever get the message - they'll simply skip over your letter and keep going. It's the nature of how people read this kind of thing that it will be a real win if they read the first paragraph, let alone the rest.

“Advocates of the intervention launched a full-on bid to try to stop the project" is opaque, because it doesn't say what project you're talking about. I'd go for the single thing you'd shout out of your car window about the situation if you passed a medical friend walking along the pavement. Something like, 'Cochrane's failures over its ME/CFS review severely damage its reputation' (there will be better phrases, but this is a quick illustration).

And then I think the first sentence needs to say what has actually happened, for those who didn't read the article. At the moment you start with, 'The News article by Jacqui Wise (2025) today gives a fair account of the disgraceful behaviour at Cochrane over the planned re-writing of the Systematic Review on Exercise Therapy for ME/CFS.' But how about, 'The News article by Jacqui Wise (2025) today gives a fair account of the disgraceful behaviour at Cochrane in abandoning the planned re-writing of its poor-quality Systematic Review on Exercise Therapy for ME/CFS, which risks harm to patients.

Even if that was all that anyone read, you would have successfully stuck the boot into Cochrane, as it deserves.

 

Perhaps I should make it 'would have been' (now offered).

 

It might be, but at least half the point of submitting this is to expose the BMJ editorial office to the arguments. I am not in favour of pussyfooting. Last time I sent in something about as critical it was published. Thee might be another wording. I will have a think.

 

I still read that in a way that doesn't make your case - I read it as, 'would legitimately have explained their actions if Cochrane had thought to put it forward, so they're off the hook'.

I don't see any mention of Hilda Bastian's bereavement in the Wise piece - does it need to be raised? The delay has been five years so I can't see Cochrane trying to use it as a shield.

 

I actually see it the other way around. If a BMJ reader sees a title about 'Cochrane's failure on ME/CFS' they will think 'Oh yeah, been there, done that'. The title is deliberately intended to make readers curious.

Similarly, if I go on about poor reviews and harms to patients the same 'yeah, been there...' will flag up. It would be opinion. I am just leading people through the sequence of events.

The letter may already be too long for the slot. I think I need to raise eyebrows and let people dig. A long spiel about what has gone on isn't my intention. The title is shocking. In a way that is all I need to say, with references.

 

I'm all for the jugular.

 

I still think the title is maybe too cryptic. I take your point about 'been there, done that' but how about something like, 'Is this the final nail in Cochrane's coffin?'

That would get me reading, even if I was jaded about Cochrane. And asking a question is always a good way to pull in readers.

 

I support an abrupt or assertive letter. For me the Wise piece, though a good account, lacked punch.

 

Hilda raises it in her blog and the letter is really a pointer to her blog. Mentioning the Wise piece is just an excuse for raising the topic with BMJ and pointing out that it does not give the full picture. I am ambivalent about mentioning Hilda's loss but I want to give her a lot of credit here, hopefully to encourage her to stick to her guns. I know what losing a son is like so I feel quite strongly that I should offer sympathy if only to indicate all hatchets are buried.

 

Nice point and not too long.