Journal of IiME Volume 7 Issue 1 (May 2013) IiME PROPOSAL FOR RESEARCH and EXAMINATION FACILITY At the IIMEC8 conference Dr Ian Gibson will announce news of the foundation research for ME project which the charity and its supporters will fund. It is a biomedical research project and will be carried out at the University of East Anglia. This follows three years of work by the charity and its supporters. It was at the 5th Invest in ME International ME Conference in London in May 2010 that Invest in ME announced that we had entered into discussions with the University of East Anglia to instigate a research facility for ME. Discussions continued after that conference and we decided to publicise our attempt to set up such a facility. We attached the research to a proposal for a centre of excellence for ME – something which the UK does not have today and which is required. Such a centre would allow proper examinations of people with ME, would allow patients to be put forward for trials, would allow the severely effected to be included in research, would facilitate translational biomedical research into ME to allow early results to be used for the benefit of patients, and would enable a database of results to be maintained. It may seem straightforward to get research carried out, to organise the necessary elements to treat patients properly, to initiate fundraising to carry this out. In practice it has not been so straightforward. During this time we have had setbacks. There have been walls put up, some understandable but others mendacious. We have encountered apathy and ignorance from some and lack of support from some. We have been affected by the effects of the government reforms to healthcare which affected everything in the NHS. Despite setbacks we have continued to try to get these necessary building blocks for a UK Centre of Excellence off the ground. Invest in ME are a small charity – Small charity BIG Cause has been our slogan. But we are determined and we have continued to lobby and to arrange and attend meetings. Our Invest in ME (Charity Nr. 1114035) fundraising efforts have continued and the inspiration given by the efforts of supporters has energised us to do more, and never give up. It does feel that we have been working on this project every single day – and that is close to the truth. A plain fact of life is that healthcare departments and organisations do not prioritise treatment of ME patients and the recent government healthcare reforms have seriously affected the timescale for implementing this – with a lot of preparatory work lost. The charity has had to spend much time trying to educate people about this disease. Though there have been a few surprises and disappointments along the way, thanks to wonderful support and help from fellow campaigners, we have managed to get there. Our work in attempting to set up a clinic, which is linked to the research, continues. IiME supporters can be truly proud of the fact that a top UK research university is preparing to perform high quality research into ME using sequencing facilities which already exist in Norwich Research Park. The foundation project looks very good. And so we build on this and continue. We have other ideas to supplement this and initiate new research. We will continue to try to have proper services for people with ME. Below is a summary of information relating to the proposal which was formulated by an Invest in ME steering group that was formed to oversee the setting up of this facility. It has taken a great deal of work and determination to pursue this proposal. But we hope this convinces anyone considering supporting our efforts that we are serious and will continue until we have a proper research base which can make a major contribution to understanding and treating this disease. www.investinme.org Page 9 of 36

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