Queen Mary University of London (QMUL) have revealed that they spent £250,000 on legal fees in the recent tribunal concerning the release of anonymised data from the PACE trial.
Their statement was made in response to a query made under the Freedom of Information Act by Mr. John Peters. QMUL paid £160,000 to Mills & Reeve, a firm of solicitors, and £50,000 to a barrister, Mr. Timothy Pitt-Payne, QC. Mr. Peters estimates that Value Added Tax, payable on legal fees, would bring the total to just under £250,000.
The fees stand in stark contrast to the £450 limit that QMUL refused to exceed in paying for data analysis that would have shown what the trial’s outcomes would have been if its authors had not abandoned key parts of their original analysis protocol after the trial had begun.
The refusal of a Freedom of Information request by Mr. Robert Courtney in December 2013 for these results led to a request by Mr. Alem Matthees in March 2014 for anonymised, raw data that would allow him to calculate the outcomes at no significant cost to QMUL.
QMUL refused that request but Mr. Matthees appealed successfully to the UK Information Commissioner, who ordered the release of the data last October. QMUL’s appeal against that decision was heard at a three-day tribunal in late April and a decision is still awaited.
Some of the changes made to the analyses by the PACE trial authors were extreme. Under the new criterion for recovery of physical function, patients could get worse than when they had entered the trial, obtain a score close to that of patients with Class II congestive heart failure, and yet be classed as having recovered from their ME/CFS.
The PACE trial’s main findings were published in The Lancet, who have so far failed to act upon an #MEAction petition of over 12,000 patients asking for the misleading analyses to be retracted, and an open letter from 42 leading scientists asking for independent reanalysis of the data.
For an analysis of the PACE trial, see MEpedia’s article on PACE.
The NIH ME/CFS Research Roadmap public comment period is open now with a deadline of March 8th. #MEAction is a member of the ME/CFS Research Roadmap Working Group and for the past several months we have been advocating on behalf of this community within this group. Our Executive Director, Laurie Jones, served on the nervous