When researchers publish a new study on chronic fatigue syndrome, a group of patients cry foul—and decide to investigate for themselves.

A landmark study on chronic fatigue syndrome sets off a multi-year battle between patients and scientists. On one side, we have a team of psychiatrists who have researched the condition for decades, and have peer-reviewed studies to back up their conclusions. On the other, a group of patients who know this condition more intimately than anyone and set out to expose what they think is bad science.

(Original art by Claire Merchlinsky)

A note to our listeners:

This episode references studies that are both controversial and complex. Our interest is always to provide accurate and complete information to our listeners, and to provide context in which the science we cover can be understood. To that end, we’d like to share additional information on the efficacy of cognitive behavioral therapy and graded exercise therapy as treatments for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Two systematic reviews (studies of studies) by The Cochrane Collaboration examine cognitive behavioral therapy and exercise as treatments for ME/CFS. These may help contextualize the findings of the PACE trial and aid our listeners in drawing their own conclusions.

GUESTS

• Julie Rehmeyer, author of "Through the Shadowlands"
• Michael Sharpe professor of psychological medicine at Oxford University
• David Tuller, journalist and visiting lecturer at UC Berkeley
• Ivan Oransky, journalist and co-founder of Retraction Watch

FOOTNOTES

• The PACE trial home page, includes trial materials, FAQ, and links to the papers that came out of the trial.
• The qmul-2014-f73.xlsx">PACE trial data and ipd-readme.txt">readme file.
• Virology Blog including David Tuller’s original three part series criticizing PACE (“Trial by Error”), as well as responses from the authors, and more.
• Patients’ first reanalysis (published on the Virology Blog) of the PACE recovery paper.
• They later published the re-analysis in the journal Fatigue and the PACE researchers responded to the patients’ re-analysis.
• PLOS ONE expression of concern, including a response from the authors.
• Retraction Watch’s recap of the legal proceedings regarding Alem Matthees’ request for anonymized trial data.

CREDITS

This episode of Undiscovered was reported and produced by Elah Feder and Annie Minoff. Editing by Christopher Intagliata. Thanks to Science Friday’s Danielle Dana, Christian Skotte, Brandon Echter, and Rachel Bouton. Fact-checking help by Michelle Harris. Original music by Daniel Peterschmidt. Our theme music is by I am Robot and Proud. Art for this episode by Claire Merchlinsky.