THE PACE TRIAL THE PACE Trial has been frequently discussed in articles on the Invest in ME Research website and on the charity’s social media since the first paper was published by Lancet in 2011. [1] The PACE Trial has been shown to be flawed and a colossal waste of scarce public funding which should have gone to funding biomedical research which, by now, may well have been leading to a breakthrough in treating this disease. Recently the results from this trial have been thoroughly analysed and destroyed by a series of articles published in Professor Vincent Racaniello’s (Columbia University, USA) Virology blog by US journalist David Tuller. [2] Once these reviews began to create huge interest over the internet then the usual typical orchestrated media reaction appeared. As always happens the establishment media trot out their normal array of buffoons and denialists – spreading more oil on the fire by linking ME patients with militants and those who see stigma in mental health – with no real evidence to support either accusation and demonstrating a profound ignorance of the disease and of ME patients [3]. But then the establishment view is to see any valid criticism against false science as a threat - and their only method of response is to denigrate those who are suffering the most. Despite an orchestrated attempt to maintain the pretence that anything valid was produced by this research it must surely be plain for all to see, including a great many more academics and unbiased opinion, that the PACE Trial is now synonymous with farce, bias and null field research. www.investinme.org On October 27th the Information Commisioner’s Office (ICO) ruled in favour of a complainant that had requested raw data from the PACE trial to be made publicly available by the QMUL. [4]. In attempting to thwart attempts via FOI to get PACE Trial data released QMUL spent, in one month, over twice as much money as patients raised in three years of fundraising for IiMER’s biomedical research foundation project. As our advisor Emeritus Professor Jonathan Edwards from UCL has written - "If scientific interpretation is poor it deserves no protection. If it is good it needs none." The MRC policy is unequivocal on this – as pointed out by James Coyne PhD [Why the scientific community needs the PACE trial data to be released Posted November 11, 2015] [5] The UK Medical Research Council (MRC) 2011 policy on data sharing and preservation has endorsed principles laid out by the Research Councils UK including "Publicly funded research data are a public good, produced in the public interest, which should be made openly available with as few restrictions as possible in a timely and responsible manner. To enable research data to be discoverable and effectively re-used by others, sufficient metadata should be recorded and made openly available to enable other researchers to understand the research and re-use potential of the data. Published results should always include information on how to access the supporting data." -UK Medical Research Council (MRC) 2011 policy on Page 42 of 82
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