data sharing and preservation ber%202015.pdf So it is even more incongruous that, in all of the recent discussions, the MRC and other funders of this trial were so silent regarding this clear breach of guidance, this utter waste of money, this total waste of years of opportunity for good research into ME? Although it does not surprise us the silence is, nevertheless, indicative of an establishment organisation whose policy toward ME research is being led by those who do not best serve the interests of patients. Retraction of the PACE trial paper and release of the raw data for other scientists to review would no doubt mean that the whole mess around the PACE trial would have consequence elsewhere - as it is not just about one paper but the influence that it has had on health policies across the world. It would, however, send a strong message that misleading research is not tolerated nor should it be used as a means to bolster a universities’ Research Excellence Framework (REF) as has been the case now. The seriousness of the way in which this whole research has been conducted, and the consequences still remaining as referenced research, requires that the PACE Trial paper itself has to be retracted. Retracting the whole paper will send a message that poor quality research, especially when it is designed to influence healthcare policy, cannot be allowed. The Lancet, which fast-tracked the first of the PACE trial papers in 2011, really ought to have favoured patients. The editor of the Lancet failed even to respond to Invest in ME Research’s letters regarding the PACE trial http://www.investinme.org/Documents/Lancet/Lette r%20to%20Editor%20of%20the%20Lancet%20Novem www.investinme.org In this day and age it is unacceptable that research performed with public funding can be allowed to be controlled by anyone who is not transparent and open in their treatment of data related to the research. If raw data from the trial shows that the public has been misled even more than so far identified then there should be a public inquiry The MRC invests in research on behalf of the UK tax payer. The taxpayer has been ill-served by the PACE Trial. The MRC should therefore examine the possibility of having the funds for the PACE Trial returned in part or in full to the public – and from there to be allocated to biomedical research into ME. It must be considered whether the Principal Investigators of the PACE Trial be barred from receiving any further public funding for future research into ME. The MRC need to review the management of this trial and procedures for deciding how funding for research into ME is decided to be allocated. The refereeing system for reviewing research applications for ME needs to be overhauled and made transparent. Those in the MRC who have been responsible for research into ME over the last eleven years must, if still in positions of influence with regard to ME research, be replaced. The MRC policies have been a shambles and valuable years of research possibilities have been wasted - along with a monumental loss of scarce public funding. Conflicts of interest of those in the MRC who have any influence on ME research need to be declared and examined. Page 43 of 82
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