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Hope for Chronic Fatigue Syndrome: PACE trial is flawed, should be reanalyzed.
The debate over this mysterious disease is suddenly shifting.
Julie Rehmeyer
(My tweet)
The debate over this mysterious disease is suddenly shifting.
Julie Rehmeyer
Last month, a team of researchers released their latest study on chronic fatigue syndrome. Psychotherapy and a gradual increase in exercise, the researchers claimed, were lasting, effective treatments that could lead to recovery. The study was an update of the largest treatment trial in CFS history, now with longer-term data.
That might sound like good news—but I knew these researchers’ past work very well, and it had only added to the misery of CFS patients like me. Back in 2011, I watched the headlines spread around the world when the team, funded by the British government, published the first results in the Lancet—while I was desperately ill in bed, reading the news on my phone, too weak to sit up to use my computer.
I—and a lot of other people with knowledge of CFS—couldn’t believe what we were reading. Psychotherapy had helped me keep my sanity while my body fell apart, but it had never made me less sick
Peter White, a psychiatrist at Queen Mary University of London and the lead PACE investigator, told me by email in late October that “some small overlap might be expected” between the criteria for entry into the trial and those for recovery, and he pointed out that there were two additional criteria. He didn’t, however, mention that those criteria were also weakened. When I inquired why such an overlap “might be expected,” he declined to answer further questions...
The PACE researchers have refused to release the data in the past, arguing that “activists seeking to discredit the PACE trial and its researchers” would somehow decrypt the anonymous details in the data and publish the names of participants. And White told me that the changes to the original protocol “improved the science and interpretation. We see no reason why we should do a further analysis based on an inferior method.” Horton, editor of the Lancet, didn’t respond to my request for comment.
“The Lancet needs to stop circling the wagons and be open,” says Bruce Levin, a biostatistician at Columbia University who signed the open letter. “One of the tenets of good science is transparency.”
(My tweet)
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