Journal of IiME Volume 3 Issue 1 Comment highlighted at our last conference and from there we move on this year to focus on severe ME. The severely affected are a group of patients who do not figure often in research – which may be due to the lack to appropriate funding. The severely affected people with ME are neglected by healthcare organisations and by the establishment authorities responsible for funding research. Many believe it is only by examining severely affected patients that the true nature of this illness is revealed and treatments and cures will be found. Appropriately, to coincide this year with our emphasis at the conference on severe ME Invest in ME has published the Lost Voices book – a unique collection of stories, photographs and facts which highlights the effect of severe ME on patients, on families and on society. Lost Voices has already been distributed to twenty countries and is to be found in medical libraries, community libraries, hospitals, GP surgeries, and a whole raft of various places within the community. The IiME International ME/CFS Conference London 29tthh May 2009 Since the last Invest in ME international biomedical research conference the European ME Alliance (EMEA) has also been created and meets in London after the conference for its first AGM. The Alliance now spans across Europe, the most recent addition being Spain, and it is hoped to supplement with the remaining European countries before long. The Invest in ME conference in London in May will be our fourth biomedical research conference and now welcomes delegates from four continents and fourteen countries. We welcome many new delegates as well as old friends. Invest in ME (Charity Nr. 1114035) Some who will not be seen at the conference (as we go to press) will, again, be the Secretary of State for Health, the Medical Research Council and the Chief Medical Officer. Despite the persistence of IiME in asking, and an amazing response from the ME community in petitioning, these main establishment areas still fail to take ME seriously enough to listen to the foremost speakers displaying research on their doorstep. The sad point about this is that treatments are available for ME. The IiME 2008 conference had presentations from Dr John Chia and Dr Martin Lerner, showing effective treatments for some sub groups of ME – treatments which NICE actually refused to endorse. The fact that treatments by antivirals are currently expensive is seen as one reason why they are not used in the UK for ME. Yet the recent outbreak of swine flu has shown how easy it is to provide antivirals to anyone suspected of having contracted this strain of the flu virus. Invest in ME have written to the Chief Medical Officer and asked why is ME any different? Are lives not worth more than money? Should not the Chief Medical officer be making a statement as to why antivirals (or any other relevant medications) are not used for ME? If only the CMO would accept one invitation to the IiME annual biomedical research conference then he would be able to see first hand how this might affect real people. In the absence of progress from the government, Medical Research Council and within the NHS we need a CMO who will stand up for patients. We need action and leadership and we cannot afford to lose yet another generation to this illness. Perhaps the next year will be different. IiME will continue with our conferences and are already putting plans on paper for a bigger conference in 2010 to celebrate our fifth Page 6/76 www.investinme.org
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