Trial By Error: Cochrane Continues Telling ME/CFS Patients to Go F–k Themselves

By David Tuller, DrPH

Update/Correction: Below, I initially wrote that Cochrane was lying in describing the update plan as a “pilot project.” However, it turns out that the organization did describe its plan to engage community partners as a “pilot project.” Here’s the statement from March, 2020: “Cochrane is conducting a pilot project for engaging stakeholders (such as consumers, clinicians and researchers) in the development of high-profile Cochrane reviews. The pilot will develop and test a process for involving stakeholders in updating the Cochrane review on Exercise therapy for chronic fatigue syndrome.” 

So Cochrane wasn’t technically lying about the fact that it had initiated a “pilot project.” However, the passage that includes that phrase–while not explicitly stating that the update itself, as opposed to just the engagement process to produce it, was a “pilot project”–clearly conveys that impression. After all, Cochrane didn’t just drop the “pilot project” in engagement; it dropped the entire process of producing an updated review, and linked the two actions together in one statement. In my view, Cochrane itself is clearly using the excuse of the engagement part having been a “pilot project” to justify abandoning the effort completely and to imply that there was no firm commitment to update the review. Pilot projects are meant to be abandoned if they don’t prove useful. Full-scale promises and commitments are not meant to be abandoned as if they were simply pilot projects.

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Last Monday, Cochrane presented the international ME/CFS community with a big lump of coal for Christmas. The organization announced that it was abandoning a longstanding promise to produce a new, fully updated review of exercise interventions for ME/CFS. The new review was intended to replace a 2019 version that Cochrane itself had publicly acknowledged was outdated and inadequate.

Since then, there have been other disturbing developments that raise questions as to whether the Cochrane brand has lost whatever integrity it once possessed. The organization, renowned for its systematic reviews of interventions for different medical conditions, has re-published the disputed 2019 exercise review with a 2024 date, as if it were itself a new version—when nothing at all was added to the text. All that was added was an editorial note announcing that Cochrane was dropping its plans for an update. This seems like a very blatant form of publication misconduct.

(It is possible that this revised date was automatically appended because of the added editorial note. If so, the organization needs to fix it immediately and restore the earlier date. There is no excuse—none whatsoever–for pretending that this is a 2024 review, especially given that the most recent study included is the fraudulent PACE trial, whose main results were published in 2011.)

On top of that, Cochrane has flagrantly misrepresented the situation in its public comments, offering absurd excuses for its decision to drop the review-update project—as I mentioned last week. Its most recent editorial note included the following:  

“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.”

The claim that the process for producing the proposed update was a “pilot project” is true, as I’ve noted in my update above. But the decision to produce the update was not in any sense presented to the public as a “pilot project”–it was an explicit commitment. In a subsequent statement in February, 2020, Cochrane announced that Hilda Bastian, a longtime Australian health consumer advocate and a Cochrane co-founder, would head up the IAG. The statement noted the following:

“In October 2019, Cochrane announced its commitment to a full update [of] the Cochrane Review Exercise therapy for chronic fatigue syndrome. The statement noted plans for: ‘a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group that we intend to convene. This group will involve partners from patient-advocacy groups from different parts of the world who will help us to embed a patient-focused, contemporary perspective on the review question, methods and findings.’”

In other words, months after announcing its plans, Cochrane reiterated that it had issued an unequivocal “commitment to a full update.” The fact that the engagement process was a “pilot project” is irrelevant in this context. To link the abandonment of this “pilot project” on engagement so closely to the abandonment of the update–as if the two were one and the same–is to engage in serious gaslighting. Cochrane went to great lengths to appoint a new writing team and an Independent Advisory Committee to oversee the work. Now it is telling everyone involved, and the entire ME/CFS community, to go fuck themselves. There is no other way to put it.

Bastian has been a longtime Cochrane insider, but in her role as a member of the IAG she has publicly disagreed with the organization’s recent decision. She wrote the following on a WordPress blog that she has maintained to support development of the updated exercise review:

 “Many of you will have seen Cochrane’s recent communication about the review on ME/CFS and exercise. We regret their decision to reject our advice, and are discussing next steps.” The statement, Bastian wrote, was “on behalf of the Independent Advisory Group.”

What happens next is unclear. It is obvious to the sane that the psychosocial zombies have overrun the place. Does anyone among the Cochrane leadership retain a smidgen of common sense, honesty and sense of responsibility? Doesn’t look like it from here. Hopefully the IAG and the members of the writing team will find a way to pursue their work despite Cochrane’s unacceptable actions. 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.