Journal of IiME Volume 3 Issue 1 www.investinme.org The 4th Invest in ME International ME/CFS Conference 2009 (continued) effective treatments for enteroviral infections. Pooled human immunoglobulins are still effective in the very early stages of the illness, the first 6 months, but if this window of opportunity is missed then the illness may develop into a more chronic condition with serious consequences for the patient and the need for long drawn out and expensive therapy Garth Nicolson has, at great personal cost, engaged with various CMIs and in the early days recognised the strong similarities between ME/CFS and Gulf War Syndrome. The recent Binn’s report on Gulf War Illness clearly identifies the importance of chemical exposures in this CMI although vaccine exposures may still play an important role. Chemical and biological exposures leading to neurodegenerative and neurobehavioural changes need to be better understood. Garth has provided effective antibiotic treatments for ME that follow some intracellular microbial infection, for example with mycoplasma organisms. Previous Invest in ME conferences have emphasised the inadequacies of the current Fukuda/CDC definition of ME/CFS and the importance of sub-groups. Clarity is greatly needed in this area. Norway, as a result of powerful and persistent campaigns by ME suffers and activists led by Ellen Piro, has changed official attitudes towards ME by showing the effects of vaccines in provoking the illness which may also arise from natural infections. Barbara Baumgarten heads a newly established ME-centre that provides correct diagnosis, treatment and management of ME emphasising once again the need for accurate diagnosis as the sine qua non for effective therapy for PWME. Will this new centre be the beginnings of a European WPI? The seminal book by Hillary Johnson makes clear the need to consider the epidemiology of ME which is important for prompt action with regard to the illness. Although intracellular organisms, including rickettsia, chlamydia, borellia are wellknown to give rise to ME the epidemiology of Invest in ME (Charity Nr. 1114035) Giardiasis, an extracellular parasite can teach us lessons that are valuable in engaging with ME. Harald Nyland will make these interesting links in his presentation. Kenny de Meirleir has championed patient needs and treatment in Europe and also contributed to the Canadian definition of ME/CFS. He has written perceptively about the disruption of essential immunological mechanisms in this illness by micro-organisms, heavy metals and other environmental chemicals. Case studies are the key to building up clinical understanding of the complexity of ME and its various manifestations that so perplex those newly encountering with this illness. We will learn much from his experiences. Jonathan Kerr has carried out ground breaking studies in the genetics of ME especially in the most severely affected patients. This new field provides deeper understanding of the multisystem nature of the illness and shows how it can relate to other CMIs. The use of genetic analysis to identify clinical phenotypes for diagnosis and treatment will enable accurate sub-grouping of patients and targeted treatments to be developed and applied to this needy group of patients. Jonathan’s genetic studies show how a multiplicity of environmental insults can impinge upon a smaller number of key biochemical pathways and give rise to a multiplicity of symptoms – this is great gain and supports the experiences of many sick patients. Basant Puri, also at great cost, has used advanced neuro-imaging techniques to investigate the structural and chemical changes in the brain associated with ME and devised useful treatments that specifically address these changes. The multi-system nature of ME requires a conference Chairman who is familiar with the illness in all its manifestations. Jonathan Brostoff is such a person and has a vast experience in all the complexities of immunology and conducts research into allergy and environmental health issues. Page 58/76
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