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Abstract:
This article by David Tuller in The Sick Times details a public relations crisis for Cochrane, a prominent UK charity known for medical reviews. The core of the crisis lies in Cochrane's decision to abruptly abandon a promised update to its controversial 2019 review on exercise therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The original review, which recommended exercise, was widely criticized by patients for ignoring the phenomenon of post-exertional malaise (PEM). Cochrane's subsequent actions—halting the update project and re-publishing the outdated review with a new date—are seen as a "betrayal" by patients and experts, leading to accusations that the organization has "flash-incinerated their credibility" and engaged in "political games."
Summary:
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Article Context: David Tuller's article, published in The Sick Times on February 4, 2025, investigates a public relations crisis faced by Cochrane, a major U.K. charity renowned for systematic medical reviews.
Controversial 2019 Review: The crisis originates from Cochrane's 2019 review concerning exercise therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). This review recommended exercise, deeply angering many ME/CFS and Long COVID patients who experience post-exertional malaise (PEM) – a worsening of symptoms after exertion.
Acknowledged Flaws and Promise of Update: At the time of the 2019 publication, Cochrane's editor-in-chief admitted the review was flawed, based on outdated research questions and ME/CFS definitions from 2002 and the 1990s, and committed to developing an updated version.
Abrupt Abandonment and Deceptive Re-publication: In December 2023, Cochrane abruptly abandoned its commitment to update the review, shocking patients and experts. Furthermore, it republished the old 2019 review with a 2024 date, creating a false impression that it had been updated.
Strong Negative Reactions:
Todd Davenport, a professor of physical therapy and a member of the disbanded update team, stated that Cochrane "flash-incinerated their credibility" and criticized the "political games" behind the supposedly objective review process.
Patient advocate Mary Dimmock, also on the update team, expressed being "really pissed off," feeling their "good faith" efforts were disregarded.
Impact on Cochrane's Reputation: These actions have severely damaged Cochrane's long-standing international reputation as a trustworthy and reliable source of medical evidence, with critics pointing to a similar "inept handling" of a mask review in 2023.
Call for Political Engagement (Comment): A reader comment suggests that the Long COVID community should engage with the politics of post-viral illness, learning not to blindly trust medical organizations and institutions.