Professor James Coyne’s request for the dataset used for a paper about the PACE trial in the journal PLOS ONE was rejected on Friday as “vexatious”. King’s College London (KCL), acting for the PACE authors, wrote to Professor Coyne that they considered that there was “a lack of value or serious purpose to [his] request”, “improper motive” and a “polemical” purpose. They also wrote that “the request “has caused and could further cause harassment and distress to staff” and that an “active campaign to discredit the project has caused distress to the university’s researchers who hold legitimate concerns that they will be subject to public criticism and reputational damage.”
Professor Coyne made the request on 13 November, citing PLOS ONE’s data-sharing policy to which all authors agree when submitting papers to the journal. KCL instead responded by treating his request under the Freedom of Information Act and promised a response within twenty days.
The denial was sent on the evening of the twentieth business day. It comes despite Professor Coyne’s earlier online publication of a letter to PLOS ONE saying that if the PACE authors denied him the data “they will be testing the commitment of PLOS to its policies and the scientific community will be watching… In the eventuality that I do not receive their data, I believe appropriate sanctions should be available for immediate application.”
Response from the academic community has been swift and condemnatory and is growing. Prominent bloggers Retraction Watch wrote, “King’s College London doesn’t want to release data to James Coyne from a study of chronic fatigue syndrome. See if the absurd reasons make your blood boil as much as ours”. Research biologist Klaas van Dijk wrote to PLOS ONE requesting that they “immediately issue an Expression of Concern attached to the paper” and that “the paper be retracted if Professor Coyne has not received full access to all raw research data… within one month.”
Academics who appear unfamiliar with the PACE controversy but who have an interest in scientific standards are using Twitter to express their disapproval of KCL’s action. They include neuroscientist Professor Chris Chambers of Cardiff University, who tweeted, “If @KingsCollegeLon is seeking to do itself ‘reputational damage’, hiding trial data shd do the job”, and leading University of Virginia research psychologist Brian Nosek, who tweeted, “King’s College data sharing refusal and rationale are antithetical to science”. Dr Nosek is the Executive Director of the Center for Open Science.
It is possible to leave comments on the PLOS ONE site in relation to the PACE paper. Professor Coyne has posted a comment about the study authors’ refusal to share their data and in response, one patient wrote, “Patients are relying on PLOS One to be the first scientific institution to stand up for good scientific practice in the context of the PACE trial… Patients don’t risk their health in clinical trials so that study authors can misrepresent the results and prevent independent researchers from investigating them.”
The PACE trial was a £5 million, publicly funded UK study whose authors claim that graded exercise and cognitive behavioural therapy showed benefits for patients with chronic fatigue syndrome. It has been dogged with controversy since its inception and its authors have repeatedly refused to supply raw data from the study that would allow independent investigation of its findings. An 11,000-strong petition calls for misleading claims made by the PACE authors to be retracted.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the