By David Tuller, DrPH
In November, 2023, journalists Betsy Ladyzhets and Miles Griffis launched The Sick Times, a publication whose tagline is “chronicling the Long Covid crisis.” Since then, the publication has diligently tracked the political and medical developments of this post-pandemic pandemic and has become a go-to source for intelligent reporting on the situation.
I have previously posted interviews with Ladyzhets and Griffis about their plans, once shortly after they launched and most recently last month. Today, The Sick Times published a story of mine—the first I’ve written for them. The article concerns the current public relations crisis that Cochrane, a major U.K. charity, has recently created for itself. In December, the organization announced that it was abandoning a commitment to update a flawed 2019 review of exercise therapy for the illness it called chronic fatigue syndrome. Below, I have posted the top part of the story below. You can read the rest here.
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“Really pissed off”: Cochrane receives backlash from advocates and experts after abandoning ME/CFS review
For decades, Cochrane — formerly called the Cochrane Collaboration — has been known internationally for its systematic reviews of medical treatments and interventions. Now the U.K.-based charity is under fire for its clumsy handling of a thorny issue: the status of a flawed 2019 review of exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
In recommending exercise as a treatment, the 2019 review angered many people with ME/CFS, who routinely experience relapses after excess activity — a phenomenon known as post-exertional malaise (PEM). (This story uses “ME/CFS” because those involved in the update have used the term and because it is currently the most commonly used term for what is believed to be a cluster of related illnesses.)
In December, Cochrane blindsided people with ME/CFS — as well as those with Long COVID, many of whom also experience PEM — by abruptly abandoning a commitment to develop an updated version of the 2019 review. In addition, Cochrane republished the old review with a 2024 date, creating the false impression that it had, in fact, been updated.
Many patients understandably viewed these actions as a betrayal of the promises Cochrane made when it published the 2019 version. At that time, Cochrane’s editor in chief, Dr. Karla Soares-Weiser, acknowledged in an editorial statement that the review was “based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s.” In other words, Cochrane committed to the update because its leadership was aware that the published review was inadequate for present purposes.
“I think patients are disappointed but not surprised, because they’re pretty used to being given the run-around by the authorities,” said Todd Davenport, a professor of physical therapy at the University of the Pacific in Stockton, California, and a member of the team appointed to write the updated review, including a new protocol.
“The net result of all this is that Cochrane has flash-incinerated their credibility, or what was left of it,” Davenport said.
The update project was already way behind schedule. Davenport and the rest of the writing team, which included patient representatives as well as researchers and Cochrane staff, had invested considerable time in drafting a new protocol. They submitted a final version to Cochrane in February 2023, after having received feedback on previous drafts. They heard nothing further until last month, when Cochrane sent out a curt message informing them that the project was disbanded.
Davenport was particularly disappointed because of his past respect for Cochrane, which was founded in 1993 and named after Archie Cochrane, a Scottish physician and advocate for randomized controlled trials and systematic reviews. Working with thousands of volunteer experts around the world, the organization has produced many hundreds of systematic reviews. These reviews can be highly influential in clinical medicine, although in 2023 Cochrane received significant backlash over its inept handling of a controversial review of masks and viral illness.
“Ever since I was a student, Cochrane has been held up as this trustworthy, reliable source of information,” said Davenport.“If you had a clinical question, Cochrane was the place where you went to find an answer. This experience has really showed me the extent of the political games behind this supposedly objective process of trying to synthesize studies.”
Mary Dimmock, a patient advocate and another member of the writing team, said she was “really pissed off” at Cochrane’s actions. “We put a lot of work into doing this in good faith, and they just pulled it with no consideration for the patients,” she said.
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Again, you can read the rest here.