Journal of IiME Volume 5 Issue 1 (May 2011) Diagnosis continues to be at the heart of the problems surrounding ME and diagnostic criteria are critical. One of the IiME‟s aims has continued to be to campaign for such a diagnostic test. Already there is enough research which has identified biomarkers for ME – more awareness of this needs to be given to healthcare providers so that doctors are more easily able to diagnose ME patients correctly. When Invest in ME started the international biomedical research conferences we were learning of the scientific and political issues that surround ME. We have come a long way since and the publication of a study showing association of XMRV and ME/CFS by Lombardi et al. in the Science magazine in October 2009 has created enormous publicity and interest among scientists who are new to this disease. The science has been discussed at the highest level of the National Institute for Health (NIH) and in conferences and workshops around the world. A USA blood working group was set up and countries around the world have banned patients with the diagnosis of ME/CFS from donating blood. In the UK the blood donation ban is permanent - the official reason given being that ME is a remitting and relapsing neurological illness and patients need to be protected from further deterioration of their health. This reason was something which most patient organisations ridiculed as preposterous as the nature of ME has been known for many years. The real reason for introducing the ban was, of course, concern for the recipients and for potential contamination of blood supplies. Over the past decades UK governments have shown complete disdain for any attempts to properly research and treat ME - a policy decision implemented by the negligence of the National Institute for Clinical Excellence (NICE) and by the corruption and bias in policy-making in the Medical Research Council (MRC) which has allowed a gravy-train of continual research funding to be directed only to a lobby of Invest in ME (Charity Nr. 1114035) psychiatrists – culminating recently in the hapless and flawed PACE Trial which typifies the bogus science which has dominated UK research. In the Republic of Ireland the blood donation ban came into force in August 2010 (although curiously there was no public announcement). The Irish authorities gave the lie to the UK position on blood donations by providing the true reason for a ban “to protect of the recipient of the blood donation of possible infectious agent”. The politics regarding this disease have not gone away – something which may be expected when new discoveries are made – though we doubt if the motives behind some of the denial regarding ME and new research is anything to do with good science. Invest in ME directed attention to this issue this year by arranging a pre-conference evening with Dr Ian Gibson and the US journalist Hillary Johnson presenting on Science, Politics…and ME. This will be available on the conference DVD from IiME. The IiME conference this year will display biomedical research which, in any other context, would be of interest to policy makers and healthcare strategists. Yet the Chief Medical Officer of England continues to uphold what is now becoming a tradition at the Department of Health - namely to ignore proper research and play no role in changing the way ME is treated and perceived. Invest in ME wrote to the Lancet to invite the editor (someone who publicly declared that ME advocates should be willing to debate the way ME is treated) to attend. At the time of going to press the Lancet had again declined this offer. These are attitudes from the establishment organisations which are typical of the continuing hypocrisy and abdication of responsibility at the heart of healthcare provision in the UK. Yet the IiME conferences do allow a platform Continued page 5 www.investinme.org Page 4/58
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