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

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Moderator note:

Since Cochrane cancelled the update of the Larun 2019 review and republished it unchanged as the 2024 review there has been much discussion over several threads. Now that action is beginning to happen we have decided to bring discussion together on this thread.

Posts about recent developments have been moved here from the following threads:

Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian
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Parts of some news posts have been copied here to give a brief background to this thread.

News in Brief Week beginning 16th December 2024

Cochrane announcement

Update on ‘Exercise therapy for chronic fatigue syndrome’
Announcement quoted in full:
"In 2019, Cochrane published an amended version of the review 'Exercise therapy for chronic fatigue syndrome’ and, at that time, announced an intention to further update the review. Due to insufficient new research in the field and a lack of resources to oversee this work, the update will not be proceeding.
Any feedback on this decision should follow Cochrane’s established complaints process. Any correspondence sent directly to individuals at Cochrane will not be considered. Monday, December 16, 2024"
Announcement | Thread

'New' version Cochrane has taken the unusual step of republishing the 2019 Larun et al review as a 'new' version dated 19th December 2024. The only change to the text is the addition of an editorial note which concludes:
"The Editorial note has been agreed to inform readers that Cochrane is ceasing the production of a full update of this Cochrane review. A pilot project for engaging interest holders in the development of this Cochrane review was initiated on 2 October 2019 (see Editorial Note below) and has now been disbanded. Cochrane maintains its decision to publish this Cochrane review in 2019."
2024 review | Thread

Science for ME petition update quotes the Cochrane announcement, and adds: "The IAG and the members of the review writing group have had their goodwill and efforts badly misused by Cochrane. We hope they will now speak publicly, urging Cochrane to act with scientific integrity and humanity by withdrawing the 2019 review." Please keep sharing the petition.
Petition | Thread

Trial by Error by David Tuller Cochrane Tells ME/CFS Patients to Go F-k Themselves
Tuller provides a writeup of Cochrane's decision to abandon their commitment of updating their controversial review on exercise as ME treatment and concludes "Updating the review is simply not a priority. Cochrane either doesn’t want to do it, or has been pressured not to. Or perhaps both."
Article l Thread
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Week beginning 23rd December 2024

Cochrane review Exercise Therapy for ME/CFS.
Science for ME petition Cochrane: Withdraw the harmful 2019/2024 Exercise therapy for CFS review
Now has over 14,000 signatories, with over 1000 signing in the week since Cochrane announced cancellation of the new review process (see last week's news)
Petition update How a review published in 2019 became a review published in 2024
"To be clear, the 2019 review has not been changed, it has not been updated. The only things that have changed about the 2019 review are the addition of that editorial note about the abandonment of the new review process... and the citation... A 2024 publication date is particularly misleading... The literature search was undertaken in 2014 and so the review contains no source material more recent than the 2011 PACE study report."
Petition update | Petition thread | Review | Review thread

Trial by Error by David Tuller Cochrane Continues Telling ME/CFS Patients to Go F-k Themselves
On the lack of common sense behind Cochrane’s decision to abandon the update of its review on exercise as treatment for ME/CFS. "The whole mess has confirmed that Cochrane is not fit for purpose. If the organization is incapable of fulfilling its basic functions—producing reliable and accurate reviews—it is time to shut them down."
Article l Thread

Week beginning 30th December 2024

Science for ME petition Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
Update: On Cochrane's excuses for scrapping the replacement review process they set up: Part 1
This part examines the first excuse given by Cochrane, a lack of resources to oversee the review, pointing out it was Cochrane that made the process overcomplicated, and much of the work has been done. "Do personal allegiances outweigh a commitment to good science? An alternative no-cost solution would have been to withdraw the Larun review - there are good grounds to do so. Why is Cochrane so determined to maintain the Larun et al review, in the face of such substantial costs to people with ME/CFS and to itself?"
Petition | Update | Thread
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Just noting that PubMed now has a note below the abstract that says the 2024 version is an update of the 2019 version.
upload_2025-1-17_15-38-48.png

This is still incredible to me. The "update" is that there will be no update: "The Editorial note has been agreed to inform readers that Cochrane is ceasing the production of a full update of this Cochrane review."

The last "update" from 2017 to 2019 wasn't any more useful: "A statement from the Editor in Chief about this review and its planned update is available here: https://www.cochrane.org/news/cfs". Was that the whole update for 2019?

So you can just make your paper as new as you want by adding random little messages?
 
forestglip said:
Just noting that PubMed now has a note below the abstract that says the 2024 version is an update of the 2019 version.
View attachment 24996

This is still incredible to me. The "update" is that there will be no update: "The Editorial note has been agreed to inform readers that Cochrane is ceasing the production of a full update of this Cochrane review."

The last "update" from 2017 to 2019 wasn't any more useful: "A statement from the Editor in Chief about this review and its planned update is available here: https://www.cochrane.org/news/cfs". Was that the whole update for 2019?

So you can just make your paper as new as you want by adding random little messages?
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Apparently.
 
Ann Milne made another comment on the Exercise review in December and the authors (Larun) have responded....I think this is the first time Larun has responded since 2015 ( https://www.cochranelibrary.com/cds....pub9/detailed-comment/en?messageId=447334172)

I have screenshotted Milne's comment and the reply. It seems Larun is replying to a completely different comment as she has changed the heading to make it about GRADE (which it isn't) rather than lack of clarity in the text of the review https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/read-comments

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Caroline Struthers said:
Ann Milne made another comment on the Exercise review in December and the authors (Larun) have responded....I think this is the first time Larun has responded since 2015 ( https://www.cochranelibrary.com/cds....pub9/detailed-comment/en?messageId=447334172)

I have screenshotted Milne's comment and the reply. It seems Larun is replying to a completely different comment as she has changed the heading to make it about GRADE (which it isn't) rather than lack of clarity in the text of the review https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/read-comments

View attachment 25070

View attachment 25069
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I imagine Ann Milne will reply. For Larun to say the point estimate (-3.4) is clinically significant is very misleading (what a surprise) as the confidence interval is -5.3 to -1.6. In short, this means the true effect could be anywhere between these two estimates. So the true effect could be -1.6 which is not clinically significant. I think this is why it's called a non-zero effect.

Quoting from the results section of the review "If the pooled SMD estimate is re‐expressed on the 33‐point Chalder Fatigue Scale, it corresponds to an MD of −3.4 points (95% CI −5.3 to −1.6)"
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/full#CD003200-sec-0046
 
Midnattsol said:
That would be correct. Cochrane Norway has moved from FHI/National Institute of Public Health where Flottorp works to "Høgskulen på Vestlandet". Physically not that far away from University of Bergen (at least its main campus) so only backwater in that it's not a "proper" university in Norway (but have applied to be).
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Any articles on this because it seems like a strange decision.
 
Retraction Watch: Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome

Cochrane abruptly ceased communication and made little effort to explain why the pilot was abandoned, said Hilda Bastian, a meta-scientist, writer and cartoonist in Australia who was a founding member of the Cochrane Collaboration. “It’s hard to find a word to describe how badly they treated everybody involved in this,” she said. “It’s been pretty appalling behavior.”

The review is of “extremely poor quality,” added Jo Edwards, an emeritus professor of Connective Tissue Medicine at University College London. Edwards said he has seen several past versions of the review. “It produces a message, which is contrary to what the NICE [National Institute for Health and Care Excellence] assessment has made and is simply not in the patients’ interest,” he said.

A petition calling for the review to be withdrawn started in September 2023 and has so far attracted more than 14,000 signatures from concerned patients and researchers.
​
Full article: https://retractionwatch.com/2025/01...xercise-therapy-for-chronic-fatigue-syndrome/
 
Wyva said:
Retraction Watch: Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome

Cochrane abruptly ceased communication and made little effort to explain why the pilot was abandoned, said Hilda Bastian, a meta-scientist, writer and cartoonist in Australia who was a founding member of the Cochrane Collaboration. “It’s hard to find a word to describe how badly they treated everybody involved in this,” she said. “It’s been pretty appalling behavior.”

The review is of “extremely poor quality,” added Jo Edwards, an emeritus professor of Connective Tissue Medicine at University College London. Edwards said he has seen several past versions of the review. “It produces a message, which is contrary to what the NICE [National Institute for Health and Care Excellence] assessment has made and is simply not in the patients’ interest,” he said.

A petition calling for the review to be withdrawn started in September 2023 and has so far attracted more than 14,000 signatures from concerned patients and researchers.
​
Full article: https://retractionwatch.com/2025/01...xercise-therapy-for-chronic-fatigue-syndrome/
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:thumbup: Bastian admits Cochrane has been appalling.
& Proff JE gets to counter Cochranes claims.

But not loving to see more of Cochranes attitude.
 
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ME/CFS Skeptic said:
Quote from the retraction watch article:

Back in 2019, we made an overview of guidelines and policies that referred to the GET review here:
https://www.s4me.info/threads/the-influence-of-the-cochrane-review-on-get.11768/
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@Trish did cite several examples in her comments on Hilda Bastion’s Blog, and the current Australian guidelines writing process is also relying heavily on Larun et al (2019 misleadingly now redated 2024). Perhaps someone with more reliable memory than me could provide the links.

Also it is worth using one of the science research search tools to identify the number of times Larun et al have been cited since 2019. I think we are looking at thousands of academic papers citing this out dated and flawed review relating to ME/CFS, to Long Covid and to other conditions.

It is good to see Hilda now speaking out so openly.

[added- see next comment for correction “You might be thinking of the article from the Royal Australian College of General Practitioners (RACGP) on 'incremental exercise' for ME/CFS, written by Glasziou, which only cited PACE, Larun Cochrane (2019 version), and for some opaque reason an article on Long Covid research.”]
 
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Peter Trewhitt said:
the current Australian guidelines writing process is also relying heavily on Larun et al (2019 misleadingly now redated 2024). Perhaps someone with more reliable memory than me could provide the links.
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You might be thinking of the article from the Royal Australian College of General Practitioners (RACGP) on 'incremental exercise' for ME/CFS, written by Glasziou, which only cited PACE, Larun Cochrane (2019 version), and for some opaque reason an article on Long Covid research.

The actual Oz guidelines update process has not really started yet. It has only been announced. The literature review it will be based on is not even being done for another couple of years.

https://www.racgp.org.au/clinical-resources/clinical-guidelines/handi/a-z/g/graded-exercise-therapy-chronic-fatigue-syndrome

Edwards said the review in question was “being widely cited and used for these purposes” but did not have at hand an example of the document being cited in policy documents.
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See the RACGP article.
 
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