I
recently posted about Cochrane’s unsatisfactory responses to a request from the Science for ME forum that the organization withdraw
“Exercise therapy for chronic fatigue syndrome.” a seriously flawed and unreliable 2019 review. The forum also requested an update on Cochrane’s delayed efforts to produce a new ME/CFS exercise review designed to replace this 2019 document; the latter, unfortunately, remains on Cochrane’s site and continues to get cited by promotors of the GET/CBT treatment paradigm. The forum found the organization’s responses inadequate and has filed
a formal complaint with Cochrane about the matter.
In the meantime, after more than two years of silence about what has—or has not–been happening with the planned new review, Cochrane last week finally offered a glimpse into developments. The information arrived on November 10th in the form of
a report from Hilda Bastian, a long-time Cochrane associate and the designated head of a team, called the Independent Advisory Group (IAG), that is charged with overseeing the development of the new review.
Bastian herself appointed the members of the IAG as well as the members of the team responsible for writing a protocol and the review itself. After promising regular progress reports, she and Cochrane stopped communicating publicly about the guideline development process; until last week, Bastian’s most recent update was in July, 2021. Given this information void, many patients felt dismayed, confused, depressed, and angered. And understandably so.
Bastian started the update with some terrible personal news, then touched on other factors that contributed to delays in communicating with the public as well as to an “unplanned hiatus” of the IAG’s. As far as I’m aware, this was the first public acknowledgement of such a hiatus. As she wrote:
“This report is long overdue, and so comes with deep apologies for my long silence. I was out of action for some time after the sudden death of my son late in 2021. That coincided with the upheaval for this project caused by the organisational changes and complaints discussed in this report. The combination of extended uncertainties and confidentiality while some processes were underway made meaningful reporting impossible. Those uncertainties included how long the unplanned hiatus for the IAG might last. The authors’ work on the draft protocol continued, however.”
Besides Bastian’s family tragedy, a major cause of the delay turned out to be objections to the entire project from interests presumably aligned with the GET/CBT ideological brigades—those with the most to lose from a new review. As Bastian explained:
“The reasons [for the delay] included the lengthy and confidential process following a detailed complaint that called for the process to be discontinued, and for the review to remain in its current form. The basis for incorporating an IAG into the editorial processes of a Cochrane review was challenged, as well as the need for an update, and the proposed editorial process. The complaint also argued that too many of the people who were authors of the review or members of the IAG, including me, were too biased in favour of criticisms of the current Cochrane review.”
