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 Those guidelines rescinded the recommendations from NICE’s 2007 guidelines for graded exercise therapy (GET) and cognitive behavior therapy (CBT) as treatments for what was then being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.
Given all this, much of the brunt of people’s dismay fell on Bastian, a Cochrane co-founder, who had been tapped to lead an Independent Advisory Group to help guide the process. After the initial announcement, Bastian posted a statement on behalf of the IAG in which she expressed her displeasure with Cochrane’s decision.
Today she posted a much lengthier account of the entire matter on Absolutely Maybe, her blog on the PLOS site. The post, called “When Journal, Scientific Society, and Community Values Clash,” covers the background of the outdated review, the clashes around its publications, the complaints and Cochrane’s responses to them, the decision to commit to an updated review, and the denouement.
Bastian’s post is thorough, thoughtful, heartfelt and at times scathing in its analysis of Cochrane’s actions. It is well worth reading in full. I won’t recap all the details here. But here’s part of the kicker:
“After all those months and years of delays, there was something particularly cruel about dumping all this on a patient community in the week before Christmas – and announcing that the people who are supposed to be accountable will ignore correspondence directed to them. This, while multiple properly lodged criticisms, and complaints about the lack of response to them, have remained unanswered for years.
“It’s even more unacceptable for this particular patient community. As Yong [Pulitzer-Prize-winning journalist Ed Yong, who reported on the pandemic for The Atlantic] has pointed out, ‘ME/CFS patients face extreme dismissal and disbelief’ about their suffering, from many directions, and it hurts. ‘Societal dismissal of this kind,’ he said, ‘leads to scientific neglect.’ Cochrane is compounding this.
“…As serial bad news came from Cochrane across that week, the distress and emergency emails and calls and meetings had predictable results for some: They crashed. Even Cochrane’s duty of care to the consumers it appointed to its IAG wasn’t honored. I don’t know how to put my sorrow and anger about this into words.”
Link to the petition demanding the withdrawal of the flawed exercise review: https://chng.it/XqXkNTMQzH
Although S4ME has sent information on the petition to Cochrane, so far they have failed to even acknowledge its existence.
My conclusion from all this, very much in line with your “Members of the GET/CBT ideological brigades…” above, is that Cochrane has fallen to regulatory capture by some special interest.
Being both a vector of deliberate disinformation on behalf of some special interest, and being a trusted journal or the like, are mutually exclusive.
My observation remains that the collective payers of disability income in Europe and the West face a collective lifetime cost of about US$5 trillion if ME/”CFS” were recognized and true disability fairly compensated, and an additional US$10 trillion of lifetime income for people truly disabled by Long Covid over just the last 5 years. So my “Cui bono?” for all of this is that unpayable financial obligation. In this analysis the “ideological brigade” are simply agents of those shirking the unpayable obligation.
The fix for this, of course, is that science must be freed (and funded) to acknowledge ME/”CFS” and LC are real, to find biomarkers, to find the class of mechanisms in the body by which PEM PESE PENE occurs, and to find treatments or cures. Simply paying disability would require too large a share of many countries’ GDP (any private payer of disability income would be bankrupted instantly by an accepted biomarker, so to circumvent their existential need to prevent science from making progress here, they would have to be bailed out). We have to treat or cure, and get people back on their feet.
David wrote:
“Bastian’s post is thorough, thoughtful, heartfelt and at times scathing in its analysis of Cochrane’s actions. It is well worth reading in full.”
I’d second that. I found it extremely well-written, quite easy to read. I’d recommend that people read it if they can.