Tribunal Orders Release of Withheld Data from London Trial

A tribunal in the U.K. has ruled that data from a clinical trial into chronic fatigue syndrome (CFS) must be released, according to an announcement by MEAction, an international patient network for Myalgic Encephalomyelitis. The tribunal rejected an appeal from Queen Mary University of London (QMUL).

The trial, called PACE, was a £5 million, publicly funded clinical trial of exercise and cognitive behavioral therapy for CFS. QMUL spent over £200,000 on legal fees in this case to appeal against the Information Commissioner’s decision that they should release anonymized data, stated MEAction. To allow analysis of the data according to the study’s original published protocol, the request for data was made under the Freedom of Information Act.

QMUL claimed the data was personally identifiable information and was not sufficiently anonymized, but the tribunal rejected these arguments, noting that QMUL had already shared the data with a small selection of other scientists, the release continued. The tribunal was satisfied that the data “...has been anonymized to the extent that the risk of identification is remote.”

The tribunal also noted the "strong public interest in releasing the data given the continued academic interest" and "the seeming reluctance for Queen Mary University to engage with other academics they thought were seeking to challenge their findings," MEAction added.

In its submissions, QMUL made a number of accusations of harassment from patients, while QMUL’s expert witness characterized PACE trial critics as "young men, borderline sociopathic or psychopathic", but the Information Commissioner dismissed these remarks as "wild speculations", according to the statement.