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UK Parliament Grand Committee Room debate 21st June 2018
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==The [[PACE trial]]== The [[PACE trial]] was criticized by several MPs. No debate attendee defended the study. "We now know that 13% of the participants in the PACE trial qualified at baseline as “recovered” or “within the normal range” for one of the study’s two primary measures—self-reported physical function—even though they were classified on the same measure as disabled enough to enter the study. That anomaly, which occurred because the investigators weakened key outcome thresholds after data collection, invalidates any claim that patients recovered or got back to normal. The overlap in entry and outcome criteria is only one of the trial’s unacceptable features." --[[Carol Monaghan]] MP "PACE is unique in UK medical history, in that it was part-funded by the [[Department for Work and Pensions|DWP]]. The links of some of its main authors to health insurance companies are troubling. One of those authors, Professor [[Michael Sharpe]], states in his briefing for the debate: 'Several of the investigators had done small amounts of independent consultancy for insurance companies, but this was not relevant to the trial. The insurance companies played no part in the trial.' I will leave hon. Members to make up their own minds about that." --[[Carol Monaghan]] MP "Some people consider ME to be a psychological condition, despite the fact that people with ME are not allowed to be blood or organ donors. Unfortunately, those who hold such beliefs often are in influential positions and have a blinkered view of the condition. I wonder what they have to fear from proper biomedical research into ME. If such research showed they were correct, their views would be vindicated. However, if it threw up new information that had an impact on ME treatment and care, as medical professionals they should surely support that." --[[Carol Monaghan]] MP ([https://www.youtube.com/watch?v=qZTfEG_u-rc video]) "I have seen scientists writing in journals such as the Journal of Health Psychology calling out the PACE trial, so the idea that the scientists who produced that work have gone unchallenged by other scientists is simply not true. A huge amount of evidence from eminent people in the science community questions the PACE trials, including the methodology, the evidence they used and how they treated their patients, as the hon. Lady said. Therefore, it has been proven not to be the case that the NICE guidelines, built on that questionable evidence, are the only way in which we should consider this disease, and she did that well in a previous debate." -- Sir [[Edward Davey]] MP "Some £5 million was set aside for the PACE trial; if we could have a small amount of that money to start real, biomedical research into ME, we would be making a step forward." --Sir [[Edward Davey]] MP "After spending more than £200,000 fighting a freedom of information request, Queen Mary University of London, PACE’s data custodian, had to share access to the data. Subsequent re-analyses have shown that changes to the criteria for recovery and improvement distorted the results." --[[Jim Shannon]] MP "There has been discredited research, such as the PACE trial—and others, no doubt—which is now being dismissed, and not before time." --[[Kelvin Hopkins]] MP "We must always make sure that there is a proper evidence base and that statistics are properly measured. We had a paper circulated to us that shows that the PACE statistics were false. They just did not work." --[[Kelvin Hopkins]] MP "[[Merryn Crofts|Merryn's (Croft)]] mum is critical of the PACE guidance given by NICE and attributes the worsening of Merryn’s condition to it." -- [[Liz McInnes]] MP (see [[Merryn Crofts]]) "If the PACE trial were a drug, it would have been banned by now.” --[[Liz McInnes]] MP, quoting the mother of Merryn Crofts ([https://www.youtube.com/watch?v=-H9ualBKcUY video]) "Patients with ME feel that they have been let down time and again as research such as the PACE trial — which, sensibly, we heard about — have been found to be seriously flawed. In fact, [[Jonathan Edwards]], emeritus professor of medicine, said that the PACE trial would be a great example 'in an undergraduate textbook as an object lesson in how not to design a trial'." --[[Sharon Hodgson]] MP
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