Journal of IiME Volume 5 Issue 1 (May 2011) The Media and ME continued that eventually you will get a different answer”. Refusing to relinquish long held and cherished ideas about the nature of ME/CFS is exactly what the Wessely School have done for the last 25 years, and indeed they continue to do so  Ms Parry continues: “Some people also said that the trial was meaningless because it excluded those with a neurological disease, therefore could not have contained anyone who had ME since this is a classified neurological disease. This is a bit silly because why would you design a trial that excluded the very patients you wanted to study?”. The answer, Ms Parry, is simple: the Wessely School refuse to accept that ME/CFS is a neurological disorder. As another, more informed, commentator (JT) has remarked, Ms Parry‟s article “is an embarrassment….The trial was not studying the neurological disease ME/CFS but people with chronic fatigue in the absence of neurological signs, or “CFS/ME”….If the Oxford criteria had been applied correctly there would be no people present with ME….People should now be aware that the results were not clinically significant, and there remains little evidence to support the use of CBT and GET in the management of ME/CFS” Is it not important that highly respected scientific journalists get their facts right and refrain from contributing to the prevailing media bias about which Professor Jason was so outspoken? 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. The failure of CBT/GET is written in the numbers: even the skewed data presented and published in The Lancet show that CBT/GET are of no clinical value in the cohort studied, and certainly do not confirm that the interventions are safe and effective enough to be generalised to everyone with ME/CFS or even “CFS/ME”. ME FACTS 1993: In his now world-famous Testimony before the US FDA Scientific Advisory Committee on 18th February 1993, Dr Paul Cheney said: “I have evaluated over 2,500 cases….We have seen the worst and the best of the range of scenarios that can befall a patient with this disorder. At best, it is a prolonged postviral syndrome with slow recovery or improvement within one to five years. At worst it is a nightmare of increasing disability with both physical and neurocognitive components. The worst cases have both an MS-like and an AIDS-like clinical appearance….We have lost five patients in the last six months….The most difficult thing to treat is the severe pain….The most alarming is the neurological and neurocognitive elements of this disease. Half have abnormal MRI scans, 80% have abnormal SPECT scans, 95% have abnormal cognitive evoked EEG brain maps. Most have abnormal neurologic examinations….40% have impaired cutaneous skin test responses to multiple antigens. Most have evidence of T-cell activation….From an economic standpoint, this disease is a disaster. 80% of the cases evaluated in my clinic are unable to work or attend school…The yearly case production, if plotted, is exponential….The medico-legal aspects of our practice steadily grow as this disease eats at the fabric of our communities. We admit regularly to the hospital (with)…inability to care for self….CFS is an emerging, poorly understood disorder with a distinctive clinical presentation. I am not at all sure that it is as heterogeneous as some would lead you to believe….This disorder is a socio-economic as well as medical catastrophe that will not end….This disease is too complex to rely on standard medical orthodoxy to explain it….Listen to patients with an open mind. Failing that, then listen to those who have spent countless hours with a thousand patients. Most of us have some wisdom to impart and most of that came from patients”. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 17/58

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