The decision to abandon a process to re-evaluate a review recommending exercise therapy for chronic fatigue syndrome (ME/CFS) has reignited calls for the article to be withdrawn.
The 2019 version of the Cochrane Library review, “Exercise therapy for chronic fatigue syndrome,” has accumulated 67 citations, according to Clarivate’s Web of Science.
The review recommends exercise therapy to treat ME/CFS, a treatment approach that drew widespread criticism from the patient community and researchers, who say physical activity isn’t an adequate remedy for the condition. According to the petition, Cochrane’s former editor-in-chief admitted the review in question wasn’t “fit for purpose,” although the editor-in-chief’s statement did not use that phrase.
Following outcry, Cochrane then launched a pilot project in October 2019 to take a second look at the review, which involved creating an independent advisory group and a public consultation.
But following delays stemming from the COVID-19 pandemic and after Cochrane lost much of its funding in the UK, the publication announced December 16 it is abandoning the update.
“This was due to insufficient new research in the field and a lack of capacity to oversee the work required, which significantly exceeded the resources normally allocated to an individual review,” a Cochrane spokesperson told Retraction Watch. “We have no plans to revisit this decision.”
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A petition calling for the review to be withdrawn started in September 2023 and has so far attracted more than 14,000 signatures from concerned patients and researchers.
“The Covid-19 pandemic has created even more need for evidence-based assessments of proposed therapies for ME/CFS,” the petition reads. “Many of the millions of people who are developing Long Covid meet ME/CFS criteria and have the symptom of post-exertional malaise, contraindicating Graded Exercise Therapy.”
An update to the petition posted December 18 stated:
Sadly, we are not at all surprised by Cochrane’s reneging on their promise of a new updated review while they leave the 2019 review in place. They are clearly influenced by some of their leaders who are well known to support the psychobehavioural view of ME/CFS. No prospect of a new Cochrane review makes removal of the harmful 2019 review even more vital.
Guidelines released by the US Centers for Disease Control and Prevention also state exercise therapy is not a cure for ME/CFS, and note exercise routines for healthy people may be harmful for patients with the condition.
According to Edwards, the general experience of ME/CFS patients is also that exercise therapy doesn’t work. “Not only do they not work, but they seem to upset people badly and make them worse,” he said. “It’s not quite clear why that should be but it seems to be the case.”
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.
The Cochrane spokesperson said the journal changed its editorial policy in July 2019 to no longer withdraw reviews if they are superseded by another systematic review or if the review question was considered outdated or no longer relevant. By our count in the database, from 2009 on, Cochrane has retracted or ‘withdrawn’ over 500 reviews and their revised versions.
“Our withdrawal policy now aligns with journal retraction policies and COPE best practice,” the spokesperson added. “COPE guidance states that retraction might be warranted if an article contains such seriously flawed or erroneous content or data that their findings and conclusions cannot be relied upon. Cochrane has assessed requests to withdraw the review in question, none of which meet the criteria for retraction.”
According to Bastian, while the review has “really severe problems,” it doesn’t meet the threshold for withdrawing review articles under the journal’s new policy.
“A number of the original Cochrane founders are very enthusiastic about things like exercise therapies that can be managed in general practice,” Edwards said. “There’s a clear indication that an easier part of the motivation for Cochrane was to try and reduce the hype over high-tech pharmaceutical interventions.”
Edwards said the review should be retracted. “It’s misleading and shouldn’t be there,” he said. “It’s now about 14 years out of date.”
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I imagine there is a *no* missing here
“…changed its editorial policy in July 2019 to longer withdraw reviews”
Fixed — thanks.
“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.”
https://www.racgp.org.au/clinical-resources/clinical-guidelines/handi/a-z/g/graded-exercise-therapy-chronic-fatigue-syndrome
Is it any wonder that those with a financial interest in “curing” what amounts to side effects of poor sleep, would advocate for drug experiments over exercise?
Cochrane has forfeited all credibility. I read the the major study out of England of graded exercise therapy and it was appallingly bad. Among other things, the investigators changed their definition of remission from what was specified in the protocol in such a way that people could do worse after treatment yet meet the benchmark score for remission. Reviewers should never have approved their papers for publication, and Cochrane’s own reviewers should have recognized that the shoddy quality of the work meant it shouldn’t be included in any reviews or meta-analyses.