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
 
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Yes please, though I think the major reason given for the delay was the big reorganisation Cochrane was forced to make by cuts in funding. I don't think either Hilda's tragedy or the pandemic delayed the project significantly.

It was Cochrane's decision to deprioritise the review process to the extent that they spent nearly 2 years (Feb 2023 to December 2024) not progressing the draft protocol even as far as showing it to the IAG who they had appointed largely to provide feedback on the new protocol.
 
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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.

Jonathan Edwards said:
The only legitimate reason for delay was Hilda Bastian’s own personal tragedy
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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).
 
Trish said:
Yes please, though I think the major reason given for the delay was the big reorganisation Cochrane was forced to make by cuts in funding. I don't think either Hilda's tragedy or the pandemic delayed the project significantly.
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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.
 
Sasha said:
I see it's from the BMJ Wise article announcing the scandal, your second reference
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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.
 
Jonathan Edwards said:
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.
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My point was more that by only raising Hilda's tragedy as a reason for delay, without mentioning that it in fact didn't delay the project and it was Cochrane's decisions that did deiay it, you leave the reader with the false conclusion that Hilda's tragedy was the major cause of delay.

In fact Hilda has valiantly soldiered on trying to help progress the project after a short period of compassionate leave, as I understand it. Her tragedy was not a cause of delay. If it hadn't happened we'd still be exactly where we are now.
 
Jonathan Edwards said:
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.
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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.
 
forestglip said:
I think this language is too intense for something you want BMJ to publish.
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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.
 
Jonathan Edwards said:
Perhaps I should make it 'would have been' (now offered).
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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.
 
Sasha said:
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.
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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.
 
Jonathan Edwards said:
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.
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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.
 
Jonathan Edwards said:
It was designed to replace a review identified as sub-standard by many, including the then Editor in Chief, David Tovey.
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Adding 'Cochrane' to 'then Editor in Chief, David Tovey', would make things abundantly clear.

I take your point about brevity, but the subsequent Editor in Chief also identified the 2019 review as not being fit for purpose (e.g. used old methodology, not relevant to current definitions of ME/CFS). So, possibly you could say
It was designed to replace a review identified as sub-standard by many, including the then Cochrane Editor in Chief, David Tovey, and the subsequent Editor in Chief, Karla Soare-Weiser.


Oh, also thanks to Jacqui Wise for a very good piece, great initiative.
 
Sasha said:
I don't see any mention of Hilda Bastian's bereavement in the Wise piece - does it need to be raised?
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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.
 
Hutan said:
Adding 'Cochrane' to 'then Editor in Chief, David Tovey', would make things abundantly clear.

I take your point about brevity, but the subsequent Editor in Chief also identified the 2019 review as not being fit for purpose (e.g. used old methodology, not relevant to current definitions of ME/CFS). So, possibly you could say
It was designed to replace a review identified as sub-standard by many, including the then Cochrane Editor in Chief, David Tovey, and the subsequent Editor in Chief, Karla Soare-Weiser.
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Actually, didn't the decision to replace the review only get made under K SW's watch?
 
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