Journal of IiMER Volume 10 Issue 1 protesting the public funding policy of favouring behavioural research over biomedical one. We held our first conference in Westminster, London in 2006 in the hope that politicians and other healthcare decision makers could easily attend. Dr Ian Gibson, MP for Norwich North at the time, opened the first conference. He has been the charity’s supporter and advisor ever since. We worked with ITV Meridian and Norway’s Puls programme to allow their excellent reporting on severe ME in the UK and Norway to be seen. These programs were made available for our first 2006 conference DVD set and formed a powerful and realistic statement on how disabling ME can be to patients and their families. The 2007 we trialled a two-day public conference format in London. Dr Ian Gibson was joined by another Norfolk MP Mr Norman Lamb who opened the second day. We also started producing the Journal of IiME, a mixture of science, education and politics and as we had no funds these were printed by ourselves using a standard, slow home printer - tedious as well as time and ink consuming all that work was. June 2016 We believe that everyone who attended the 2007 conference left not only with an enhanced knowledge gained from the conference but also with renewed hope for the future. There were early signs of things to come from Norway when Ellen Piro and Eva Stormørken gave their presentation explaining the reasons for the Norwegian ME Association saying a firm NO to the Norwegian NICE guidelines. Their presentation received a great ovation as it resonated with patients and carers in the UK. Invest in ME contributed to the review of the UK NICE Guidelines (both the draft version and the final version). We found both documents unsatisfactory due to emphasis on psychiatric paradigms to manage/treat ME/CFS. Invest in ME produced a 52-page response that followed our 38,000-word response to the draft guidelines. The charity visited the CMO’s office to meet with Dr Bill Kirkup, Deputy CMO at the time. We requested that ME be treated as a notifiable illness in schools - but this was rejected. Invest in ME have written to past and current ministers at the Department of Health and to the Medical Research Council in order to encourage more funding to be allocated for biomedical research into ME. The chief executive of the MRC contributed an article for our Journal for the 2007 conference. Invest in ME took over distribution of the Canadian ME/CFS Guidelines in the UK on a not-for-profit basis. The guidelines are now a basic requirement for any Invest in ME (Charity Nr. 1114035) www.investinme.org Page 11 of 77
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