Journal of IiME Volume 1 Issue 1 1st and 2nd May 2007 Inside This Issue 3 Introduction – Professor Malcolm Hooper 4 Invest in ME 5 The IiME International ME/CFS Conference 15 IiME Awareness Campaigning 8 Professor Leonard Jason 6 Dr. Ellie Stein 16 ME Clinical Conundrum - Dr. Neil Abbot/Dr. Vance Spence 19 Biomedical research – Dr. Neil Abbot/Dr. Vance Spence 21 The Strategy of the MRC for Research on CFS.ME 25 UK FINE Trials 27 Jane Colby 28 Speaker Profiles 34 News from Abroad 34 ME in Norway 35 ME in Denmark 37 ME in Sweden 36 ME in Germany 35 ME in Spain 37 ME in USA 39 ME/CFS – by a Carer 40 NICE Guidelines 41 Gibson Inquiry 42 Information on ME/CFS - Margaret Williams Introduction – Professor Malcolm Hooper Achievements, Hope, and Future Actions All three are brought together in this conference. We celebrate the successes of the last year in the high quality research studies that have consolidated the understanding of ME-CFS as a multi-system, multiorgan illness with an increasingly understood biological basis that offers a sound basis for challenging the spurious attempts to make ME an illness that is primarily psychogenic in origin - in contradiction to the established international system of nomenclature. A Quotable Quotes booklet available at the Conference illustrates this dishonourable conflict. These achievements include advances in diagnosis and the increasing adoption of what are known as the Canadian Criteria/Guidelines. In truth these are North American Guidelines that involved co-operation between major clinical practitioners in both Canada and the USA. These should now be adopted as the international criteria and guidelines for the diagnosis of ME-CFS. The removal of the term CFS from any description of this illness would be a great advantage and provide clarity about both diagnosis and treatment. Much more is needed to define subgroups within ME-CFS with several useful schemes now available. Scientific and clinical research has continued apace despite the reluctance of the MRC and Government in providing funding for such studies. Immunology has identified low NK, natural killer, cells as a key marker that could be adopted whilst the significance of oxidative stress provides another reliable marker in hsCRP, high sensitivity C-reactive protein. The importance of a diffuse inflammation associated with ME has been found in autopsy examinations of spinal cord and brain tissue and underlines the importance and accuracy of its designation as an inflammatory illness involving the central nervous system and new understandings of neurogenic pain also provides a mechanism for the severe pain experienced by many people with ME. The details of a common underlying mechanism continue to emerge involving PKR, protein kinase R, nitric oxide and intracellular responses to viruses, other micro-organisms, such as borrelia, rickettsia, chlamydia, leading to immune dysregulation. The role of chemicals and heavy metals are accommodated in these overarching and comprehensive mechanisms. A very important new area of research concerns genetics which is beginning to address the complex issue of the interaction between genes and the environment and the questions of patient susceptibility to this and related overlapping syndromes. Hope for others is emerging from all these activities. The scientific and clinical studies are identifying good tests to aid diagnosis and also new (and confirming some old) ways of treating this debilitating illness. Mitochondrial support linked to diagnostic tests is now available in one therapeutic regimen that many find helpful. Cytokines and their inhibitors may also provide effective treatment. (continued on page 4) long and 3 Invest in ME Charity Nr 1114035 www.investinme.org
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