QMUL argued that ‘there was no overriding public outcry that CFS/ME research or treatments should subjected to such scrutiny’ and that only ‘a vocal minority’ were unhappy, ignoring the fact that
over 12,000 people signed the petition requesting the release of the PACE data and the retraction of its claims. The implication from QMUL is that a small group of patients are obsessively picking away at the fine details of the trial, issuing FOI requests in a desperate attempt to find some way to discredit it. The Commissioner seems to accept this perspective and indeed it seems unlikely that he has any idea of the real situation: that very sick patients, sometimes working from their beds, have painstakingly dissected the fine print of the trial to expose a substantial number of often astonishing irregularities and have thereby attracted the attention of, amongst others, investigative journalist
David Tuller and
Rebecca Goldin, Professor of Mathematical Science & Director of Stats.org, who have both produced detailed and damning critiques of the study. Goldin concluded that the flaws in PACE’s design ‘were enough to doom its results from the start’, while eminent researcher Dr Ronald Davis of Stanford has remarked: ‘I’m shocked that the Lancet published it…The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review’. Patients are therefore requesting release of the data not in a desperate attempt to find minor errors but as final confirmation of the trial’s ineptitude.