Journal of IiME Volume 8 Issue 1 ° Dovetails with national identification of ME as priority area (NIH initiatite and MRC highlight notice) ° Initial projects: “A role for a leaky gut and the intestinal microbiota in the pathophysiology of myalgic encephalomyelitis” The majority of the immune system can be found in the gut and it is therefore highly desirable to study the gut microbiota in ME patients. The gastrointestinal tract contains a microbiota consisting of a vast number of bacteria and viruses ° Includes cooperation with other national/international research facilities (network already in place) Benefits ° Unique opportunity to establish European hub of scientific and clinical excellence ° Attraction of international interest and research funding to East Anglia ° Early and correct diagnosis ° Establishment of clinical trials ° Development of effective treatments, leading to highly significant public savings ° Hub and spoke. model to address seriously inadequate levels of clinical service for ME in East Anglia and nationwide ° Development of network of domiciliary services to support severely affected patients (currently seriously neglected) ° Savings on existing consultant referrals and staff -ME examination focused in one area ° Financially viable – Institute can start small and grow as further funding becomes available Current status ° All elements of the Institute model are ready to be put in to place with the exception of Norfolk May 2014 and Norwich University Hospital, which has previously declined to provide a service locally as they do not feel that they “can provide a satisfactory high quality service on the basis proposed” – despite offering no service currently to ME patients ° The healthcare reforms have removed the promise made by Norfolk PCT to perform full examinations on ME patients by a qualified consultant. This now has to be renegotiated with CCGs ° The charity met with one CCG head and Dr Martin McShane – NHS Commissioning Board Authority, Director for Improving the quality of life for people with Long Term Conditions ° Dr Amolak Bansal from Epsom and St Helier CFS clinic in Surrey is providing accurately diagnosed patients for research purposes. He is involved already in the research funded by the charity ° The Foundation project at IFR/UEA examining the gut microbiota in ME patients started in October 2013 ° We have been discussing with a paediatrician at N&NUH to become involved in ME and gut microbiota research at IFR/UEA and the charity is exploring that possibility Expansion of Scope In order to augment the concept of a Centre of Excellence for ME the charity has initiated other research to expand the scope of research and form a strategy of international collaboration in biomedical research of ME. Rituximab Clinical Trial Following the charity’s research meetings and cooperation with European ME groups and researchers, especially the Norwegians, an intent was made in 2012 The beginnings of a clinical trial of the rituximab drug for ME where a multi-centre study is about to begin. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 37 of 52
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