Journal of IiME Volume 4 Issue 1 www.investinme.org poor science, ignorant perceptions and misinformation – have so prejudiced the healthcare system in the UK that people have become blind to the actual research which has been going on and deaf to the countless demands from sick and vulnerable patients asking for change and fairness. Nowhere has this impairment of senses been more apparent than with the MRC and the CMO. Another reincarnation of an MRC expert panel to look at ME has, after two years gestation, still failed to deliver anything but a few meetings. Their latest panel is riddled with remnants of the now defunct and discredited psychosocial viewpoint – where ME patients are still being maligned as suffering from a behavioural illness. The strategy of this panel is to marry the psychosocial and biomedical sides together. This strategy will not work. There is no more need for a so called "balanced approach". It will further waste precious resources and, more importantly, prolong the suffering of patients. The MRC policy toward ME continues to be a failure. An unequivocal change in emphasis must now be made by the MRC toward a policy of biomedical research. The CMO has failed to engage with ME organizations, such as Invest in ME, and will again fail to be present at a fifth international conference held just a few hundred metres from his office. The lack of serious research by the MRC and the lack of leadership by the CMO has led to stagnation in the UK with little funding of research and lack of any urgency in dealing with the problem. And then we have October 2009. A seminal moment in the history of ME. Science magazine published research by the Whittemore-Peterson Institute (WPI), the National Cancer Institute (NCI) and the Cleveland Clinic (CC) showing links between a gamma retrovirus – (XMRV) and ME. Though doubts have been thrown at the WPI/NCI/CC research by the establishment organizations which are suddenly forced into covering the blatant bias of the past this has only shown clearly how professional the XMRV research by WPI/NCI/CC has been. Not only has this discovery energised ME Invest in ME (Charity Nr. 1114035) research and highlighted the need for more funding for biomedical research it has also energised patients. As Invest in ME have pointed out in its newsletters power has now been given to the patients who have become enabled in ways which the government and MRC have failed to predict. In the time that the UK MRC have organized a few meetings of its expert panel to discuss research into ME, producing nothing substantive and even lacking minutes for the last of these meetings, the WPI have achieved a major breakthrough – not just in science but in awareness. Education of healthcare professionals means that the National Health Service (NHS) needs to rid itself of the bias which has been allowed to exist regarding ME. This needs education – correct education and awareness of the disease and the symptoms and side effects. To tackle education we need to get back to basics and ensure that medical students are properly trained and aware of the biomedical research into ME. The General Medical Council, we thought, were crucial as they arranged the curriculum. Their response to our letter is contained in the Journal and shows some confusion regarding who actually decides what is taught about ME. Recent decision by Canada and Australia to ban people with ME from donating blood clearly shows the urgency which responsible governments are showing toward a possible contamination of the blood supply by people with ME who may be carrying this retrovirus. The continuing research which is being carried out, and which is being presented at the IiME conference in London, is showing these decisions to be more prescient as time goes on. We can only wonder when Europe will follow. After continual requests by Invest in ME and our colleagues in the European ME Alliance to persuade European health ministers to consider such a ban there is still no unified action. The Chief Medical Officer of the UK government has admitted that people with ME are exempt from blood donation – but then continues by adding that they may give blood when they are “recovered” or “feeling better”! The lack of any science supporting a definition of “recovery” and the ignorance behind the statement that one can donate blood once one “feels better” is Page 4/56
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