Journal of IiME Volume 5 Issue 1 (May 2011) The Media and ME continued Media coverage of ME/CFS remains problematic; comments on the PACE Trial by Vivienne Parry written for the charity AYME (The Association of Young People with ME) published on 14th April 2011 are illustrative. Ms Parry sits on the Council of the Medical Research Council and was awarded an OBE for services to the public understanding of science. She is on the Board of the Science Media Centre, whose Science Advisory Panel includes Professor Simon Wessely. The Science Media Centre itself states: “The team at the SMC is advised by a Science Advisory Panel and a Board” which would seem to indicate a close working relationship between Ms Parry and Professor Wessely. Ms Parry is described by AYME as a “highly respected scientific journalist” but her comments on the PACE Trial do not assist patients with ME/CFS because many of them are inaccurate:  it is not known “for sure” that two treatments (GET and CBT) are “safe and moderately effective” for people with ME/CFS because it cannot be certain how many patients with ME/CFS as opposed to “CFS/ME” were included in the PACE Trial (“CFS/ME” being chronic fatigue in the absence of neurological signs)  the PACE Trial was not “as rigorous a study as it is possible to have”; as a respected scientific journalist, Ms Parry will know that if a trial is not a controlled trial, it cannot be so described  it is not quite true to say that it was carried out by “a team of experts”, since 22 of those carrying out one arm of the trial were trainee psychiatrists employed to work at the Kings College PACE Invest in ME (Charity Nr. 1114035) Centre, London   APT is not the same as pacing, and pacing was not studied in the PACE Trial people with ME/CFS do not have “fatigue as their main symptom”; they have post-extertional fatigability accompanied by malaise as their main symptom (their voluntary muscles do not work properly and are exquisitely painful after exercise)  Ms Parry says: “There are two problems here. One is about science. Research is about coming up with a hypothesis and then trying to knock it down”. This is precisely why the PACE Trial cannot be considered “scientific”. Although the Investigators‟ hypothesis that “CFS/ME” is exactly the same as ME/CFS and that it is a behavioural disorder reversible by CBT and GET was indeed knocked down by the results, the Investigators refuse to accept that the trial failed People genuinely cannot understand how individuals who profess to be speaking up for the primacy of science can defend, let alone promote, such a transparently flawed study as the PACE Trial.  Ms Parry then says: “Long held, cherished and utterly plausible ideas are regularly demolished by evidence”. This is true, but Ms Parry fails to understand that the results of both the FINE and PACE Trials demonstrate that the Wessely School‟s psychosocial model of ME/CFS is wrong and has been demolished by evidence  seemingly with no awareness of the paradox in her comments, Ms Parry continues: “This can be incredibly disappointing but you have to move on and ask the next question, not constantly keep asking the same one in the hope www.investinme.org Continued page 17 Page 16/58

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