Journal of IiME Volume 4 Issue 1 www.investinme.org Conference Edition Editorial Comment Inside This Issue Welcome to the 2010 conference edition of the Journal of IiME – a blend of science, facts, stories and news regarding Myalgic Encephalomyelitis (ME or ME/CFS). May has become the month when Invest in ME organises and hosts its annual biomedical research conference, the month in which we have tried to focus attention as International ME Awareness Month. An illness which is responsible for causing such suffering and yet which has been treated with such ineptness by governments and healthcare organisations during the last generation deserves a full month to raise awareness of the issues. 2 Lost Voices 3 Editorial Comment 8 On the Front Foot – Back to the Future 10 The PACE Trials 11 Research, Research, Research 13 An Effort to Influence Medical Textbook Writers 21 EDUCATION on ME/CFS – The GMC Position 23 Definition of Recovery in CFS 28 LL ee tt tt ee rr ffrroomm AAmmee rr ii cc aa 32 Ampligen® in Severely Debilitated CFS Patients 37 Around Europe – European ME Alliance 45 Presenters & Abstracts at 5th Invest in ME International ME/CFS Conference 2010 Invest in ME (UK Charity Nr. 1114035) PO BOX 561 Eastleigh SO50 0GQ Hampshire, UK Email: info@investinme.org W b i ti Invest in ME (Charity Nr. 1114035) Page 3/56 Our first two conferences were, in a sense, testing the water in order to find a balance for future events. Since after our 2007 conference we decided to carry a theme for each conference where presentations and publicity could be aimed at a particular area regarding ME. In 2008 we decided to publicise sub grouping within ME with research clearly identifying the sub groups which could already be clearly defined. In 2009 we decided to focus on the severely affected people with ME – a cohort of patients who have been disenfranchised and neglected by society. The introduction of the book Lost Voices coincided with the theme of the 2009 conference eloquently showing the effect on patients and their families of a disease which is actually well understood by patients and which needs a strategy of proper science to resolve. The conference this year has the theme of education of healthcare professionals with a mixture of the latest research and clinical experiences from the most renowned ME researchers and clinicians in the world. A phrase often quoted by the UK government, Chief Medical Officer (CMO) and the Medical Research Council (MRC) in the UK is that there is little known about ME. This scientific myopia is unacceptable. Five international ME/CFS conferences held at the heart of power in London have proven there is research and knowledge about this disease. What is missing is an acceptance that previous policies – based on vested interests, Journal of IiME - Disclaimer The views expressed in this Journal by contributors and others do not necessarily represent those of Invest in ME. No medical recommendations are given or implied. Patients with any illness are recommended to consult their personal physician at all times.
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