Preface to an Open Letter

Later this morning, I am going to post an open letter to Dr. Simon Wessely, who is one of the main defenders of the UK PACE trial.  This post provides a little advance context for those who have not read my earlier posts on the subject (for example, here).

The PACE study purported to show that Cognitive Behavior Therapy (CBT) could lead to recovery for a significant percentage of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients, thus validating Wessely's theory that the "psychosocial" symptoms arise from "false illness beliefs."

It turned out, however, that the criteria for "recovery" in the study had been changed mid-trial, to the point that a significant number of very sick participants qualified as "recovered" at the entry point.  In other words, someone could be sick enough to enter the study, and get slightly worse, yet still be considered "recovered" for the purpose of measuring the results.

The PACE researchers refused for five years to disclose the underlying data, which would have allowed reviewers to recalculate the results using the original criteria.  An FOIA tribunal recently required disclosure and, upon recalculation by Columbia's Bruce Levin and others, it turned out that there had been no statistically significant recovery.

Leading U.S. scientists and physicians have rejected the PACE study, instead calling for greater biomedical research into ME/CFS in recent reports by the Institute of Medicine and the National Institutes of Health.

Wessely is a champion of the CBT theory, but he was not one of the PACE authors.  He is, however, one of the principal defenders of the study, which is why I will be addressing him in an open letter.

 

Comments

[Jean]

The Wessley school need to be called to account over PACE. They are still claiming it is a good study and NICE Guidelines are still based on its findings. If any drug harmed patients as much as GET and CBT it would be withdrawn immediately. People with ME/CFS deserve not to be harmed.