Professor Edwards’ Letter to BMJ on the Cochrane Mess

By David Tuller, DrPH

The Cochrane mess, which I wrote about the other day, is threatening to take on a life of its own. Perhaps Cochrane thinks the fuss over the big Christmas “fuck you” it delivered to members of the ME/CFS community will blow over quickly. That could happen, I suppose, but I suspect this issue will continue to bedevil Cochrane unless it takes responsibility for the harm it has inflicted on patients and then moves to fix the damage.

To recap: In 2019, Cochrane published a sub-par review of exercise therapy for ME/CFS (or what it has called CFS). The review recommended exercise therapy, albeit with some qualifications. At the time, the organization acknowledged deficiencies in the review, which was based on a protocol written in the early 2000s. Cochrane promised a full-scale update, starting with a new protocol, and designated a writing team and an independent advisory group (IAG) of stakeholders. In mid-December, it curtly announced the project was dead and slapped a 2024 date on the old review.

In late January, Hilda Bastian, the longtime Cochrane insider tapped to head the IAG, posted a scathing blog taking the organization to task. Two prominent publications—Retraction Watch and The BMJ—covered the brouhaha, ensuring that news of Cochrane’s problematic actions would break out beyond the narrow confines of the ME/CFS community. Given the renewed attention to the issue, an online petition calling for retraction of the 2019 review has now attracted more than 15,000 signers.

Meanwhile, a German reporting cooperative, RiffReporter, published an account by journalist Martin Rücker that contained some new details about how and when the organization made the choice to abandon the project. According to Rücker, the decision, made at a Cochrane board gathering in September, was in part a reaction to the serious backlash the group received for its questionable handling of a 2023 review of whether masks were effective against viral illnesses. More information about how things went down will undoubtedly emerge as the situation continues to spin out of Cochrane’s control, which seems likely. In seeking to avoid more unwanted attention, the organization’s leaders seem to have created a new scandal for themselves.

Jonathan Edwards, an emeritus professor of medicine at University College London and a longtime advocate for patients with ME/CFS, sent a letter to The BMJ in response to its article. So far, The BMJ has not published it, so I have posted it here.

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“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. [Sir Iain Chalmers, a British health services researcher and physician, is a Cochrane co-founder.]

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
Emeritus Professor of Medicine
University College London

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.pdf169.full.pdf

(View the original post at virology.ws)