By David Tuller, DrPH
I have written frequently about Cochrane, the organization renowned for its systematic reviews of medical interventions, and its deeply flawed review of exercise therapies for ME/CFS–including its decision last month to abandon its commitment to produce a new version.
Now Hilda Bastian,
an Australia health consumer advocate and longtime Cochrane insider, has
posted a blog with her damning assessment: The organization’s recent actions have caused patients serious harm. Cochrane had designated Bastian to head an Independent Advisory Group (IAG) designed to help oversee and guide the process of producing the new review; the IAG has issued
its own letter to Cochrane. (I’m posting this on January 23rd my time; the blog post and letter are both dated January 24th.)
In 2019, when Cochrane published
the latest version of the review, the organization agreed that it was inadequate—not least because it was based on a protocol written almost 20 years earlier. To address the acknowledged issues, Cochrane’s editor-in-chief, Karla Soares-Weiser made what appeared to be
a sincere and firm commitment to produce an updated version based on an updated protocol.
Having strung along the ME/CFS community since then, Cochrane abruptly
pulled the plug on the effort right before Christmas, presenting millions of sick patients with an unambiguous “fuck you.” The reasons offered for this holiday gift were transparently bogus—they had nothing to do with the reasons that Cochrane made the commitment to conduct a new review in the first place. The upside-down logic was all very, very Trumpian. So was the gaslighting.
Cochrane’s action took place in the context of ongoing intense pushback from powerful interests against
the 2021 ME/CFS guidelines from the National Institute for Health and Care Excellence (NICE). Those guidelines rescinded the recommendations from NICE’s 2007 guidelines for graded exercise therapy (GET) and cognitive behavior therapy (CBT) as treatments for what was then being called CFS/ME. Members of the GET/CBT ideological brigades—like the investigators who produced Cochrane’s existing exercise review–appear to be desperate at their loss of hegemonic status in this domain. The only logical explanation is that some of these various self-important pooh-bahs have somehow weighed in and forced Cochrane to reverse course.
Apparently Cochrane doesn’t give a shit about the devastating emotional and psychological impact such a decision, delivered in such a curt manner, might have on this vulnerable patient population. Certainly no one at Cochrane has taken personal responsibility for the decision. The editorial note announcing it was anonymous; messages sent to volunteer members of the review-writing team, informing them that the project was being abandoned, came from the “office of the editor in chief.” Given that the actual editor-in-chief, Dr Soares-Weiser, publicly committed herself to this project five years ago, she could at least have had the balls to put her name on statements in which Cochrane betrays that promise.
