Journal of IiME Volume 2 Issue 1 www.investinme.org consideration of existing constraints in resources. As Dr Kreyberg states quite explicitly “grass roots” experiences especially can be as important as recommendations and therapy suggestions from professionals who do not know what the care situation involves. Dr David Bell has been involved in ME/CFS for many years and in his latest Lyndonville newsletter he explains mitochondrial disease and the type of secondary mitochondrial disease ME/CFS patients experience - the inability to sustain activity. He clearly illustrates why ME/CFS has nothing to do with deconditioning. Dr Les Simpson has also studied ME for many years and his aim has been to enable patients to manage their condition better. Dr Simpson provides a very interesting article based on his research of the shape of red blood cells in ME, an area not mentioned very often. He states that ME is one of many chronic disorders with changed red cells which will impair capillary blood flow and that ME is unique insofar as the factor(s) responsible for changes in red cell shape can switch off and, during remissions, red cell shape populations can return to normal. We also have another article from Margaret Williams which, although published on our web site in January, is still valid and worthy of reading. There is already a great fund of knowledge available for the healthcare departments, organisations and staff to appreciate the multi-system nature of ME/CFS and the need to stay current with biomedical research data. The articles in the JIiME, a small subset of the exciting potential of possibilities to treat and cure this illness, continue to frame the thought – what could be possible if proper funding were available for a national or international biomedical research strategy? And where better to demonstrate this potential than with the IiME International ME/CFS Conference 2008. We have a section at the end of the Journal covering the conference and including abstracts and agenda for the event. The theme of the conference is Sub Grouping and Treatments for ME/CFS and we believe some of the best biomedical research currently available. It promises to be an event full of objective data and established experience which cannot be disputed. The unique blend of biomedical research, objective data presented by our distinguished speakers is testament to the increasing knowledge regarding myalgic encephalomyelitis. Returning to our opening paragraph if a sea change in the perception of ME/CFS is occurring then it will be based on the good science and objective data (represented by our conference speakers), effective advocacy (represented by conference delegates from ten different countries and from ME support organisations across the world) and a new realisation from government and healthcare organisations (represented by the presence at Invest in ME (Charity Nr. 1114035) the conference of the Chief Medical Officer’s Office and the Medical Research Council). Enjoy the Journal. Enjoy the conference. Postscript: IiME organise an annual international conference, produce educational DVDs from the conference, produce a Journal and regular newsletter and a web site containing information for all. We are also involved in lobbying for better education and proper funding for ME. In the spectrum of material we use and are supplied there are variations in terminology regarding myalgic encephalomyelitis. We often refer to this illness as ME and that is where we believe it should remain - the illness has been called Myalgic Encephalomyelitis in the U.K. since 1956. However, other acronyms are used. The WHO ICD-10 G93.3 category lists ME, CFS and PVFS. Many of our distinguished contributors and presenters use CFS and in America CFS is commonly used. The UK government, despite officially accepting the WHO classification of ME as a neurological illness and thus implicitly accepting the term ME/CFS to describe the illness, confuse matters even more by using a combination of CFS and CFS/ME. NICE were criticised by IiME in mixing CFS and CFS/ME in their draft guidelines for CFS/ME. Research (and research funding) is often based on using the term CFS and attracting healthcare professionals to events such as the IiME international conferences has to allow for the fact that many still refer to ME as CFS. This subject is a major issue in itself and there are debates currently ongoing regarding name change. Representing this illness properly requires a correct nomenclature. Sub grouping and treating ME will require correct and consistent terminology. However, as extremely important as this is, IiME nevertheless do not wish to spend all of our time on winning the battle (on the correct name) but losing the war (on getting proper funding for biomedical research and up to date education for healthcare services on the real pathology behind ME). Whilst continuing to use the term ME or ME/CFS in our material we will be referring to the neurological illness myalgic encephalomyelitis and hope that readers will not be too confused by the additional use of CFS or CFS/ME by contributors and presenters. The inconsistency of terminology exists in all countries and by many organisations. We will return to this subject in a later issue of JIiME. Page 3/34
4 Publizr Home