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editorial note also clearly acknowledges that the search for studies was done in 2014, showing that the review is well out of date.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