Journal of IiME Volume 5 Issue 1 (May 2011) A UK Centre for Biomedical Research into ME patients whilst at the same time building up the research database for ME/CFS and allowing fostering of new areas of cooperation with other biomedical research facilities. The research being proposed at the university would be of the most advanced possible – using virology and immunology as the key for examining patients. An important aspect of the biomedical research is that properly defined and distinct patient cohorts are defined and maintained. The research would be oriented toward translational biomedical research, which allows results from research to be applied toward treatments for ME patients. The initial proposal for research would aim to initiate studies using the TGAC genome sequencing facility at the Norwich Research Park which would allow all viruses present to be identified in a cohort of well defined patients. Allied to this would be biomedical research projects – the first of which would examine the possible link between ME and gut inflammation. A Research Database These initial and ongoing projects would enable a database to be established for use in further research. This research database will assist epidemiological studies, enhance research potential and provide patients with proper records of treatment. A research protocol will be established to outline all the study procedures, including data collection and planned data analysis. THE CURRENT INFRASTRUCTURE This proposal would make use of the existing infrastructure where patients are initially seen by GPs and referred to a consultant. Where it differs is that a specialist biomedical clinical lead would be used to perform diagnosis and provide treatment and would be working with a translational biomedical research facility at the university in order to deliver real improvement in patient care from scientific discovery. Invest in ME (Charity Nr. 1114035) THE BENEFITS Proper examination and treatment benefits patients, their families and the PCT by ensuring that adequate services are provisioned for people suffering from this disease. The hospital and associated staff will be able to be educated in the latest knowledge regarding this disease and would therefore be able to make better decisions. The research proposal would establish this as the most advanced facility in Europe, thus bring more potential for investment and publicity. The above proposal would lead to a facility with the following benefits –  early and correct diagnosis of ME/CFS  the clinical lead consultant would assess and plan the development of future services in conjunction with commissioning PCTs  it would provide access to specialist assessment, diagnosis and advice on the clinical management, including symptom control and specific interventions, for both patients and health professionals  development of a network of local multiagency domiciliary services to support people who are more severely affected and who are unable to access hospital and primary care services  eventual provision of an ambulatory service and/or tele-medical services for those severely ill patients who cannot be moved  allow ME/CFS patients (including those severely affected) to participate in clinical trials, where novel research will be conducted, and where medical students can learn about this disease  facilitate training and education opportunities for healthcare staff to enhance their knowledge and skills in the diagnosis and management of CFS/ME  lead the development of services within primary and secondary care and support GPs and other health professionals in the care of patients with ME. Continued page 33 www.investinme.org Page 32/58

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