Journal of IiMER The charity believed that a change needed to be made in the way service provision for ME patients was carried out and proposed a simple but effective structure for providing services and instituting major biomedical research into this disease. This would have profound effects on the way ME is treated in the UK and establish a hub of scientific and clinical excellence for ME within Europe. In the last years real progress has been made in achieving this and the charity has created and facilitated opportunities that can now boast five PhDs involved in research, with another planned to join in 2017 and a post-doc/research assistant being employed to facilitate a UK clinical trial of rituximab. All of this is combined with national and international collaboration that is ongoing. This substantial effort is, even if we say it ourselves, a tremendous achievement by our supporters and a validation of their commitment and support for this new way forward. With our planned research ongoing and developing then we hope this will soon be possible. Diagnostic tests and medical treatments can only be developed from sound scientific biomedical research. This is why the charity has concentrated much effort on establishing the research centre. A clinical lead consultant would assess and plan the development of future services in conjunction with commissioning CCGs It would provide access to specialist assessment, diagnosis and advice on www.investinme.org Page 11 of 82 the clinical management, including symptom control and specific interventions, for both patients and health professionals. The charity has held discussions with the Norfolk and Norwich University Hospital CEO and UEA Medical School to create a position for a consultant who can oversee proper examinations of ME patients which include diagnosis according to correct criteria and possibilities for acceptance into clinical trials being performed at the Centre, or in associated spokes of collaborative research. There are also a number of new ideas being developed. Establishing a Centre of Excellence allows new ideas to be generated and more synergy to be obtained between different research disciplines. The research proposal would build a strategy of research that would involve patients, clinicians and researchers working together. This will take a substantial effort to achieve but we feel it can be done and the rewards for people with ME would be huge. The Centre of Excellence for ME would be welcome news for patients, and their families and doctors, across Europe and would facilitate and initiate new international collaborations, consolidate and improve existing ones, and develop new research ideas. Funding bids would enable cooperation and sharing with joint projects being undertaken.
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