Journal of IiME Volume 4 Issue 1 www.investinme.org Research, Research, Research much emphasis in the past on psychological research and insufficient attention to biomedical research. The Group welcomed the recent Medical Research Council initiative to attract new researchers and new technologies in this area. However the Group is sure that it is vital that further biomedical research is undertaken to help discover a cause and more effective forms of management for this disease” A recent Guardian article on ‘Health &Food’ edited by Sarah Boseley contained a map of England showing the geographical areas and variations in the frequency of illnesses. The major illnesses were heart, cancer etc. but other illnesses featured in the description of health problems. There was no mention of ME/CFS or some other new illnesses anywhere in the article. Presumably this is because of the paucity of data which raises the question of how we obtain that information. If we are to progress on understanding of these new illnesses which involve thousands of patients and individuals of all ages then we will need the support of not just the official government bodies but also that from support groups. In our understanding of ME/CFS it is important, I believe, to set up a research unit where we can investigate the statistics of the illness and the role of biomedical agents/factors. Our conference today, I believe, will throw light on the research areas we need to take up. To further this pursuit we should debate the setting up of a research laboratory, its financing etc. It needs advice from colleagues in other countries like Norway, the USA etc. and we welcome representatives here today. Invest in ME has entered discussions to investigate a laboratory in Norwich in association with the University Hospital. We will need a management structure to run the laboratory and to organise its activities. This is not to replace the activities of organisations who are seeking to improve treatments and services but to complement them. Like many other charities, trusts etc. in the cancer field they develop their own programmes. Research, however, as we have found out with other illnesses can re-instate you in your priorities. Invest in ME (Charity Nr. 1114035) Prevention strategies and treatments can develop in novel innovative ways. Research has a habit of throwing up major surprises. Drugs and treatments for other illnesses can become useful in your particular research. Prions were discovered in B.S.E. and mobile genes first emerged from work on maize. We need to attract researchers who understand the field and its challenges as well as the technologies. Lastly but as a major feature we need to ensure patients, carers and others are involved from the beginning. If clinical trials are to be developed then patients, nurses and others must be part of the process of setting up and interpreting the trials. I believe the will is there to set up such a research and this conference can be the talisman for the exciting new initiative. Further details from Dr. Ian Gibson Dr Gibson is working with Invest in ME on a project to provide services for people with ME. ME & MEDIA “…for many years doctors argued that Chronic Fatigue Syndrome (ME) didn’t exist. They refused even to dignify it with the name Myalgic Encephalomyelitis. ME, they said, was just ‘me’ writ large… Scientists could (now) be on the brink of a breakthrough. We must hope they are. That would – at least – go some way to compensating for the shameful manner in which sufferers were treated for so long by the medical profession”. - The Independent October 2009 Page 12/56

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