Journal of IiME Volume 7 Issue 1 THE PROPOSAL The charity proposes for a facility to be instigated with four main elements for diagnosis, treatment and research into ME – service commissioning, service provision with clinical diagnosis and examinations, translational biomedical research and a research database to allow for more research and improved training of healthcare staff. Figure 1 shows the elements of the model with patient care and treatment at the centre of the model. The proposal would be located around the Norwich Research Park in Norfolk. This area contains worldclass facilities with a leading university (the University of East Anglia (UEA)), leading research institutes and a modern university hospital (the Norfolk and Norwich University Hospital) - all of which complement the necessary biomedical research which would take place. (May 2013) from GPs. An important issue is for early and correct diagnosis to be determined. The service would include a clinical biomedical lead consultant who would perform correct diagnosis (using the international standard Canadian Consensus Guidelines or International Consensus Criteria), perform a full examination using a standard clinical protocol and, once patients have been formally diagnosed as having ME, administer possible treatments and participate in biomedical research into the disease. Using a standard diagnostic and clinical protocol the service would allow a model of care and appropriate care packages for people with severe presentations and would establish and co-ordinate a clinical network and disseminate best practice across that network. Follow-up examinations would be scheduled so that patients are provided with a service and possible treatments and results from any treatments would be fed back into a database which is administered between the university hospital and the university research faculty. GPs in the area with a special interest in ME would be used to assist and be trained in proper diagnosis and treatment of ME. Translational Biomedical Research A parallel but complementary element will be for translational biomedical research to be started by the university in association with other complementary research organisations. Figure 1 Service Commissioning Service commissioning would be performed by the local CCG or CCG Grouping (formerly the PCT). The service would require early and correct diagnosis, examination and treatment of ME using a clinical biomedical lead consultant with GPs with special interest being connected to the service. Diagnosis and Clinical Examinations The examinations of people with ME would be commissioned by the CCG. Referrals to the university hospital would be via existing methods The university would undertake biomedical research into ME using cohorts of patients from those being examined at the university hospital and provide possible recommendations for treatment. The university research would be used for more rapid provision of possible treatments for patients whilst at the same time building up the research database for ME and allowing fostering of new areas of cooperation with other biomedical research facilities. The research being proposed by the university would be of the most advanced possible – using virology and immunology as the key for examining patients. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 11 of 36
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