Journal of IiME Volume 8 Issue 1 IiME Research Projects UK Centre of Excellence Executive Summary for MPs This is a summary of the current status regarding Invest in ME’s proposal for a Centre of Excellence for ME Research and Treatment STATUS UPDATE May 2014 Background ° Seriously inadequate standard of medical care for ME patients in UK ° Very little funded UK biomedical research into condition ° Confusion between ME and chronic fatigue has led to unscientific research and ineffective treatment regimes ° NHS resources focus on symptom management therapies whilst underlying condition left untreated ° Medical professionals lack understanding of and training in ME -serious risk of mis-diagnosis and missed diagnoses ° International research has revealed much about biomedical basis of ME ° ME now identified as both highlighted area and high priority by MRC ° ME is leading cause of long-term absence from school due to sickness for students and teachers ° ME is recognised by the Department of Health as a chronic neurological illness Project Outline Biomedical research and treatment institute for ME in East Anglia, based in Norwich within the Norwich Research Park utilising and based on university and institute facilities and resources Hub of scientific and clinical excellence for ME within Europe Research arm to be funded initially by private/charitable donations leading to applications to major public research funding bodies such as the NIHR, NIH, MRC etc. Clinical diagnosis and treatment arm to be funded by CCGs (formerly agreed with Norfolk PCT) Service Commissioning ° GP referral, via normal NHS channels ° Consultant physician to diagnose patients according to international scientific criteria ° Based at Norfolk and Norwich University Hospital, subject to agreement ° GPs with special interest to be linked to Institute ° Treatment of patients based on up to date biomedical research findings ° Hub and spoke model: dissemination of expert knowledge to GPs and ME clinics nationwide ° Out of area referrals included ° Correctly identified patient cohorts considered for Institute research projects ° Training opportunities for medical students and other consultants, nurses etc. Invest in ME ° UK charity campaigning for biomedical research and treatment of ME ° Founder member and current Chair of European ME Alliance ° Organises annual international CPD-accredited international ME conference ° Organises annual international research colloquium ° Allied to a patient led campaign called Let’s Do it for ME to raise funds for Invest in ME research ° Has initiated UK gut microbiome project to study ME as well as a UK rituximab clinical trial ° Holds worldwide contacts with ME organisations, physicians and researchers Research ° Based at Norwich Research Park, including University of East Anglia and Institute of Food Research and utilizing other institutes such as The Genome Analysis Centre ° Advanced fundamental research, initially using virology and immunology ° Key component: accurate definition of patient cohort, giving scientific validity to results ° Translational research -potential for direct patient benefit Invest in ME (Charity Nr. 1114035) www.investinme.org Page 36 of 52 May 2014

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