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

New note:

 

For reference, here are the two previous versions of the editorial note. New note in the post above.

 

A useful comment by Hilda on behalf of the IAG. The updated editorial note looks to me that it has been redacted to avoid any allusion to the actual circumstances. Is this to remove any thing that might be quoted against Cochrane?

The new editorial note:

This all continues to make a mockery of Karla Soares-Weiser own 2019 statement:

especially given the input from Cochrane’s own Writing Group and Independent Advisory Group, others and our petition on this issue over the intervening five years plus. If anything Cochrane’s action over the last few years has been aimed at excluding, indeed suppressing, any patient input. They are equally excluding researcher and clinician input other than the voice of a narrow group of Cochrane insiders.

[added - sorry did not see subsequent comments posted on the next page, so contains redundant content]

 

Out of curiosity, what would be your ideal note, assuming they are not going to withdraw the review?

 

Yeah, I’m with @Trish here. It’s less nonsense, but it’s still nonsense so it would be a stretch to call it an improvement.

It doesn’t reach the minimum clinically important difference threshold, so to speak.

 

The fact that they felt forced to update their very recent comment shows, I think, they're scrambling to get out of the hole they've dug for themselves. Presumably that means they're feeling some pressure from the backlash. Otherwise, they'd have left it alone. And yes, I had the same thought about them not updating it. Which proves that they can add editorial updates without updating the review date--which makes their previous decision to update it to 2024 look all the more despicable.

 

Half-assed job, though. As always. Left the note that says there's a planned update.

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/information#versionTable

 

I think there is also a deeper confusion at Cochrane about what the Cochrane Library is about, is it a journal operating under general principles of good publishing practice or is it a synthesis of the best currently available evidence to inform clinical decision making?

Though having said that, with the Exercise review they achieve neither, rather it is an embarrassing attempt to shoe horn out dated propaganda into a semblance of science, which would be laughable if it was not empowering people to inflict real harms on real life patients.

 

PETITION UPDATE
Some small changes for the better

28 Mar 2025
An updated editorial note
Cochrane has again amended the editorial note on the Larun et al review. The Editorial Note is now:

Editorial Note (19 December 2024; amended 31 January 2025; amended 25 March 2025):
"This Cochrane review was published in 2019 and includes studies from searches up to 9 May 2014. A pilot project for engaging interest holders in the development of an update of this Cochrane review was initiated on 2 October 2019 and has now been discontinued."

People who have been following the twists and turns of this story will remember that the addition of the first version of that editorial note last December magically turned a 2019 review into a review with a 2024 publication date and citation. That alchemy seems to be as unprecedented as it is unethical.

If we compare the new editorial note to the previous version, it is notable that there is no longer a mention of the publisher, John Wiley & Sons, being in agreement with the Cochrane Collaboration. Perhaps the publisher did not actually agree that there should be a new publication date when the review content was completely unchanged?

Gone too is the statement that "Cochrane maintains its decision to publish this Cochrane review in 2019". Perhaps there are people within Cochrane who now question the wisdom of publishing the review when one Chief Editor had refused to publish it and the next Chief Editor acknowledged it needed to be replaced.

The current editorial note also clearly acknowledges that the search for studies was done in 2014, showing that the review is well out of date.

However, at the very least, given the review's many flaws, the Editorial Note on the Larun et al review needs to state that the review is not suitable for clinical decision-making. Cochrane still needs to remove the label from older comments made on the review that says that the comment applies to a different version of the review, when the only difference in versions is the Editorial Note. The ongoing pretence that the review was published in 2024 must be abandoned and the citation reverted to a 2019 publication date.


The departure of the Cochrane CEO
It is perhaps not a coincidence that these tiny shoots of progress come from Cochrane soon after its CEO, Catherine Spencer, OBE, suddenly left the organisation on 12 March 2025. She joined Cochrane in 2022, which is also when the replacement review process seemed to go off the rails.

We hope that the next CEO will be someone who thinks that Cochrane's claimed values are not just there to look nice on a website, but also should guide its decision-making.


The work continues
Meanwhile, many people continue to try to reduce or stop the harm the flawed Larun et al review is doing. Here are some examples:

The Independent Advisory Group for the now abandoned replacement review process, led by Hilda Bastian, has provided an excellent comment on the 2024 version of the review. They note that the review is outdated and misleading. The comment continues:
"In support of these statements, the authors cite a NICE guideline for people with ME/CFS that was published in 2007. [1] The NICE guideline was updated in 2021. [2] It no longer recommends exercise as a therapy, and stresses the possibility of harm. Recommendations in other major treatment guidelines are consistent with this, including national guidelines for the US and Germany. [3,4] A systematic review with a search date in October 2022 concluded that data collected in trials “are insufficiently informative to exclude relevant harm due to serious side effects.” [5]"

The Group also made a submission to the Cochrane Editorial Board on policies on "Outdated and Potentially Misleading Reviews". It noted "The misleading 2024 date increases the urgency of amending the editorial note to make it clear that this review is outdated and unsuitable for clinical decision-making."

Two members of the writing team for the replacement review process, Mary Dimmock and Todd Davenport wrote to Dr Susan Philips, the Chair of the Cochrane Governing Board expressing their shock at Cochrane's decision to abandon the process. They argue that Cochrane's rules should allow the Larun et al review to be withdrawn on the grounds of harm. They conclude: "Accordingly, we call on Cochrane to immediately withdraw the Larun et al ME/CFS exercise review."

Mary Dimmock and Todd Davenport also wrote a letter to the ME/CFS community about the replacement review process.
"When Cochrane disbanded this initiative in December 2024, they told the authors they retained the rights to use the contents of the draft protocol elsewhere. The other authors have relinquished their rights and moved on. As the remaining authors, we have decided to release the final draft protocol, as submitted to Cochrane in February 2023, and to solicit public comment."
They have made the protocol public and set up a public consultation survey on it.

Remarkably, even BACME, the British Association of Clinicians in ME/CFS, once a stronghold of clinicians favouring exercise therapy for ME/CFS, have called on Cochrane to add an editorial note to the review clarifying that it is out of date and should not be used for clinical decision-making.

The Science for ME team have also been busy, submitting complaints and appeals to Cochrane and communicating with Cochrane office holders. We will tell you about these efforts, and any replies we get from Cochrane in the next up date.

It should not be up to people with ME/CFS and their supporters to push a "world-leading publisher of health information" to act ethically and competently. There is much for Cochrane to fix, in this review, in many other reviews and within its organisation.


Please help us
If you agree that the Cochrane Larun et al review should not be guiding clinical decision-making, please share the petition with people you know. If your ME/CFS patient organisation does not appear on the list of nearly 80 organisations supporting the campaign, please ask them to consider adding their name.

If you are interested in following the news on this issue or want to contact us, you can join us on the Science for ME forum here.

 

They really do seem unable to decide which. If they're an academic journal, it makes sense that retractions and aging out has to routinely happen without updates. But by changing their policy to not retract, they can't be a synthesis of evidence. You could be reading stuff from their library, and it can not only be almost 2 decades out of date, in terms of criteria, and over a decade since the last update, but it's literally marked as recently published. Total nonsense.

Seems like they chose the worst of both. They don't bother updating, but they also keep outdated nonsense published. Makes no sense. But we appear to be the only ones who find this problematic, so clearly straddling both chairs is what the... whatever decision-making structure they adopt... want out of it. They talk about having a 'community', but that seems more in line with a similar idea in academic journals having a community of voluntary paid reviewers. The board makes the decisions, and people can choose to go along with it or quit.

I really don't get what this organization is supposed to bring. I get even less what health care professionals find valuable, considering how utterly dysfunctional they are.

 

I just re read that first paragraph and ohhh yess

wouldn’t it now!

 

I just wanted to thank people for continuing to slog away at this.

 

From HB's blog, today:

https://hildabastian.wordpress.com/2025/04/03/getting-through-hard-times/

 

Good to see that Hilda is continuing to monitor and share Cochrane’s dubious dealings with this outdated, misdated and harmful review.