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

ME Action posted another update - Bluesky post:
‪#MEAction Network‬ ‪@meactnet.bsky.social 10h
Despite years of work and input from the IAG & new author group, Cochrane fails to address critical issues in its review of exercise therapy for ME/CFS. Worse, Cochrane has not followed its own stated processes & principles. Now the IAG has a message for Cochrane.
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which links to this blog entry:

https://www.meaction.net/2025/01/24...alysis-of-exercise-therapy-review-for-me-cfs/
 
Sorry for being slow on the update -- @Jonathan Edwards do you refer to the planned Individual Patient Data review here?
Jonathan Edwards said:
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 at the time, but it is now very clear that they were well-founded.
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If yes, adding the protocol to the references would be helpful I think. (It makes clear that the author group of the current review was co-authoring with the trialists on assessing their own studies)

Link:
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD011040.pub2/full


Forum thread on that planned review:
https://www.s4me.info/threads/cochrane-exercise-review-withdrawn-individual-patient-data.7126/
 
MSEsperanza said:
Sorry for being slow on the update -- @Jonathan Edwards do you refer to the planned Individual Patient Data review here?


If yes, adding the protocol to the references would be helpful I think. (It makes clear that the author group of the current review was co-authoring with the trialists on assessing their own studies)

Link:
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD011040.pub2/full


Forum thread on that planned review:
https://www.s4me.info/threads/cochrane-exercise-review-withdrawn-individual-patient-data.7126/
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Wasn’t this a different review distinct to Larun et al and its planned then discontinued replacement, that made it to the protocol stage and then was completely abandoned?
 
Peter Trewhitt said:
Wasn’t this a different review distinct to Larun et al and its planned then discontinued replacement, that made it to the protocol stage and then was completely abandoned?
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Yes, strictly speaking that was another review but with some of the same authors (Larun et al). I just find it hard to imagine what other version of the review Jonathan could have seen.

But am easily confused these days.
 
Nightsong said:
ME Action posted another update - Bluesky post:
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I think that analysis misses the mark:
The ME/CFS community’s ongoing concern with the exercise therapy review is that it relied on studies using outdated diagnostic criteria that didn’t require post-exertional malaise (PEM), the hallmark symptom of ME/CFS, and omitted key data on harms and long-term outcomes. Despite these flaws, the review concluded that “exercise therapy probably has a positive effect on fatigue.”
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Like Hilda's blog, the focus is on the diagnostic criteria, the selection of cohorts wider than just people who have PEM.

I guess there isn't just one ME/CFS community, because this one here generally has a different ongoing concern. Many of us here are more concerned about the flaws in the trial design of the studies included in the review that can make any treatment appear to provide a small benefit.

The danger in carving out a special place for people with "ME/CFS" to not be given exercise therapy is that people who have not been diagnosed yet will be diagnosed with something else, Long Covid or FND. And with the 'only subjective outcomes in unblinded trials' trial design recipe that makes it possible for anything to be 'scientifically proven', exercise therapies will be shown, erroneously, to be mildly useful for these people with different labels.

I'm not sure why the people involved in the IAG who are speaking don't appear to understand that, or, if they do understand it, why they are pushing this short-sighted focus on diagnostic criteria.

(I've posted a version of that on the MEAction blog, it's awaiting moderation. so, yes, it appears that they do have a moderation process.)
 
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Peter Trewhitt said:
Wasn’t this a different review distinct to Larun et al and its planned then discontinued replacement, that made it to the protocol stage and then was completely abandoned?
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What I was referring to was a version of the same exercise - a Systematic Review of Exercise for ME/CFS - intended to be upgraded by individualised data handling. It was the same team plus a lot of people who were included, apparently because their data were being used. (And also Glasziou, for reasons that are unclear.) I am fairly sure that it was produced as a response to suggestions of weakness of conclusions in the earlier review. I am fairly sure we all saw it. It was completed and submitted for peer review but was also made generally available if I remember rightly.
 
Hutan said:
I think that analysis misses the mark:
Like Hilda's blog, the focus is on the diagnostic criteria, the selection of cohorts wider than just people who have PEM.
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Yes, this is very unfortunate. It reflects the earlier USA committee decision in 2015 and greatly weakens the case. The case is simply that none of these trials provides any reliable evidence of efficacy under any circumstances.

Using other diagnostic criteria is in itself entirely legitimate scientifically and to claim otherwise is to reveal a lack of understanding that threatens to be fatal to credibility.
 
Jonathan Edwards said:
It was the same team plus a lot of people who were included, apparently because their data were being used. (And also Glasziou, for reasons that are unclear.
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Yes I think the authors of the individual trials being included is a recognition for their data being used. The fact that Galsziou was senior author is more surprising. I hope he wasn't involved in the decisions about the update and its cancellation because as senior author he clearly was an involved party.

Jonathan Edwards said:
I am fairly sure we all saw it. It was completed and submitted for peer review but was also made generally available if I remember rightly.
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Can't remember reading it (but I can't remember a lot of things so that doesn't prove much!). Anyone has a link to the file?
 
Nightsong said:
Think the important-effect comment was from this PDF of FOI'd correspondence:
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Thanks! I've forgotten we had access to his response. Re-reading this a couple of years later, it seems his reply was quite unhelpful.

His advice to dichotomise a continuous measure and then rating the certainty of a non-zero effect seems to go against basic statistical principles. Zero is not a relevant threshold here. We want to know if there is clinically meaningful effect.

If it turns out that the effect was above zero but below the minimal important difference, then it the effect of exercise would be clinically meaningless. The review would then conclude that exercise therapy probably does not improve fatigue (the opposite of what it concludes now).
 
Thee may be a 300 word limit on a letter so I have sent this in as a Rapid Response that may be chosen as a letter.

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

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


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
 
Jonathan Edwards said:
Thee may be a 300 word limit on a letter so I have sent this in as a Rapid Response that may be chosen as a letter.

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

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


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
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A heartfelt thank you
 
Jonathan Edwards said:
Yes, this is very unfortunate. It reflects the earlier USA committee decision in 2015 and greatly weakens the case. The case is simply that none of these trials provides any reliable evidence of efficacy under any circumstances.

Using other diagnostic criteria is in itself entirely legitimate scientifically and to claim otherwise is to reveal a lack of understanding that threatens to be fatal to credibility.
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I'm not sure what we can do about this. It feels rather as though we have advocates fighting for us who don't know what arguments to make. Cochrane have walled themselves off, so we are relying on Hilda to take the right arguments to them.

I assume George understands that making the diagnostic criteria the primary argument results in us possibly winning a battle of getting the Larun et al review retired, but then losing the war of stopping a stream of trials showing exercise therapy is just the thing for Long Covid and FND fatigue? I also assume he has tried to explain this to his fellow IAG members? It would be great to hear his thoughts. (Also great to hear from any other IAG members, whatever their stance on this.)
 
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