Journal of IiME Volume 1 Issue 2 www.investinme.org Autumn 2007 Facts About ME In the World Health Organisation International Classification of Diseases -to which the UK is a signatory and is therefore bound by it – myalgic encephalomyelitis (ME) has been classified as a neurological disorder since 1969. In the 1992 revision (ICD-10) chronic fatigue syndrome (CFS) is listed as a synonymous term for ME and both terms are listed in the neurological diseases section at G93.3, hence the disorder is referred to as ME/CFS. ME Story This is not the life I want, to be 31 with no job, living with my parents and other people's ignorant attitudes , "everyone gets tired", "you just need to sleep less" makes me mad. The government’s lack of funding into research appalls me and the doctors I have seen know less about M.E than I do - Vikki This issue of the Journal continues with the objectives from the first issue – to provide a platform for serious research, appraisal and awareness of the neurological illness Myalgic Encephalomyelitis (ME). In this issue we have research provided by Dr. Tae H. Park from South Korea. Dr. Park has been involved in treating ME for 10 years and his practice in South Korea has treated thousands of patients. We also welcome Professor Sakudo from Japan who publishes for the first time his paper on the potential of visible and near-infrared (Vis-NIR) spectroscopy for the diagnosis of CFS using serum samples. Possible diagnostic testing has never been far from the demands of the ME patient community and Dr. Estibaliz Olano from Spain also presents news of another possible diagnostic test. Invest in ME recently noticed news of mitochondrial research by Dr. Marisol Corral-Debrinski which asked ‘Can "molecular addressing" correct mitochondrial diseases?’ This seemed of interest, when one considers past research on ME and mitochondrial abnormalities. We asked Dr. Corral-Debrinski to publish articles on her work and she has written a detailed overview of her research. We hope it will provide awareness of wider possibilities relating to ME research. We also have a paper on links between Q-fever and ME by Dr. Dragan Ledina from the University of Croatia. Dr. Nigel Speight gave an excellent presentation at the IiME conference in London in May and in this Journal he presents a personal view of ME and Children over the last twenty years. All of these papers reflect the outcome of the IiME conference in May – that there is an abundance of science available to encourage biomedical research into ME – something IiME and others have been pressing the government to acknowledge and yet something NICE have failed to recognise in their recently published guidelines on CFS/ME. Both biomedical conferences of ME Awareness Month 2007, in which IiME and MER UK worked together to promote biomedical research, also demonstrated what an exciting field ME can be for potential researchers. The need for urgent funding of biomedical research into ME is highlighted even further by Margaret Williams’ article on the PACE trials – controversial trials claimed by the Medical Research Council to be worthwhile - but denounced by the ME community as being worthless and a waste of scarce funding. Finally, with most of the ME community objecting to the prominent role psychiatry plays in the diagnosis and treatment of ME we reference a paper from Dr. Marek Marzanski detailing his research on how psychiatry and the Hippocratic Oath co-exist. The science and the advocacy available for all to see seemingly makes the plight of people with ME, and their families, even more tragic and we continue with stories from patients and carers on their experiences with dealing with this illness – including a harrowing account from one family who have had to deal with their severely ill daughter being apportioned yet another psychiatric diagnostic term – Pervasive Refusal Syndrome. We believe this further endorses the need for Journal of IiME – a blend of research, science, facts, politics and real life experiences. 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. Invest in ME Charity Nr 1114035 Page 2/72
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