Journal of IiMER Volume 10 Issue 1 influence on ME research throughout the world. Invest in ME submitted responses to the published 5-year plan for CFS (ME) from the USA Centres for Disease Control. The charity also submitted responses to the UK All Party Parliamentary Group on ME. In 2010, tired with continually sitting in meetings with the NHS to discuss services for ME - yet with no progress being made, Invest in ME formulated a proposal for biomedical research to be based at a research and examination facility in the Norwich Research Park in Norfolk – a Centre of Excellence for ME. The Norwich Research Park includes multiple institutes and companies, including the University of East Anglia, Institute of Food Research and the Norfolk and Norwich University hospital as well as the Genome Analysis Centre (TGAC). Our proposal envisaged performing translational biomedical research into ME by researchers at the university using a patient cohort which had been diagnosed by an experienced clinician using appropriate diagnostic guidelines. Invest in ME formed a steering group to initiate our proposal and entered discussions with the university and hospital and with a renowned clinician. We had been in discussions with Norfolk Primary Care Trust (PCT) also and had secured a promise to fund the patient June 2016 examinations. These discussions and promotion of our proposal as one of the best ways forward for securing proper research and treatments for people with ME in the UK and Europe continued. IiME organised and hosted the fifth annual Invest in ME International ME conference in London. This had the theme of “A New Era in ME/CFS Research” to reflect the new awareness and acceptance that only biomedical research will allow treatments and cures to be found for ME. The 5th IiME conference (IIMEC5) was as usual CPD accredited and a platform for biomedical research. Invest in ME continued its criticism of the NICE Guidelines for CFS/ME which we viewed as lacking in any usefulness for physicians or patients. We also continued to criticise the PACE trial as flawed science and a huge waste of public money – money which could have been far better utilised if allocated for biomedical research into ME. From 2011 we were joined and supported in our quest for a Centre of Excellence with a new and visionary fundraising initiative – Let’s Do It For ME - formed by three house/bedbound patients. Together we quickly raised almost £10000 for our foundation project to study the gut microbiota in ME patients. For the charity this was a great deal in terms of the usual budget. This was a turning point in encouraging people with ME and their friends and families to actively fundraise for ME as they do in many other illnesses. There is still a long way to go to get to the level of MS, cancer, heart disease etc. but it was a good start and has continued to grow. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 13 of 77
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