PLOS One has bought into discredited arguments about patient consent forms not allowing sharing of anonymized data. PLOS One is no longer at the vanguard of open science through routine data sharing.
Better days: When PLOS Blogs honored my post about fatal flaws in the PACE chronic fatigue syndrome follow-up study (2015)
The back story on my receiving this honor was that PLOS Blogs only days before had shut down the blog site because of complaints from someone associated with the PACE trial. I was asked to resign. I refused. PLOS Blogs relented when I said it would be a publicity disaster for PLOS Blogs.
I was asked by a Danish journalist to examine a randomized controlled trial (RCT) of cognitive behavior therapy (CBT) for functional somatic symptoms. I had not previously given the study a close look. I was dismayed by how highly problematic the study was in so many ways. I doubted that the results of the study … Continue reading "Danish RCT of cognitive behavior therapy for whatever ails your physician about you"
A bold BMJ editorial calls for more patient involvement in the design, implementation, and interpretation of research – but ends on a sobering note: The BMJ has so little such involvement to report. In this edition of Mind the Brain, I suggest how patients, individually and collectively, can take responsibility for advancing this important initiative … Continue reading "What patients should require before consenting to participate in research…"
I ponder this question guided by Le Chavalier C. Auguste Dupin, the first fictional detective, before anyone was called “detective.” Articles reporting the PACE trial have extraordinary numbers of authors, acknowledgments, and institutional affiliations. A considerable proportion of all persons and institutions involved in researching chronic fatigue and related conditions in the UK have a … Continue reading "Was independent peer review of the PACE trial articles possible?"
Earlier decisions by the investigator group preclude valid long-term follow-up evaluation of CBT for chronic fatigue syndrome (CFS). At the outset, let me say that I’m skeptical whether we can hold the PACE investigators responsible for the outrageous headlines that have been slapped on their follow-up study and on the comments they have made in … Continue reading "Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study"