Journal of IiMER Volume 10 Issue 1 service model being developed for diagnosis, management and treatment of ME. They are widely used in research such as the Invest in ME funded B cell study at UCL and gut microbiota at IFR/UEA. The Norwegian phase III rituximab trial selects patients fulfilling these criteria also. We translated into English the Norwegian documents describing the exciting news of the Norwegian government’s intentions (MP Laila Dåvøy was instrumental in initiating this work in 2006-2007) to treat ME more seriously and with a more strategic approach, including creation of centres of excellence for ME. From 2008 Invest in ME began participating in the All Party Parliamentary Group discussions and sent in many submissions. Sadly, the health ministers at the time, Mr Alan Johnson and Mrs Ann Keen, both declined to take responsibility for the situation with ME and declined invitations to our conferences – demonstrating a point which has been consistent over the years – that apathy toward ME patients has no party political borders. The charity was instrumental in forming the European ME Alliance in 2008 – a grouping of charities and patient organisations within Europe who came together to tackle issues around ME affecting European patients and their families. June 2016 In 2009 the charity published and distributed the unique book on ME, Lost Voices from a hidden illness, which was compiled by Natalie Boulton and highlighted the situation of those severely affected by ME and their families. This book has been ordered by patients, support groups, healthcare staff and researchers in twenty countries. It was also ordered for inclusion in the syllabus by Chicago University, USA. Numerous research activities to support TV, radio and newspaper coverage of ME were performed and IiME contributed to the consultation and review of the NICE Guidelines for CFS/ME. The charity began its Biomedical Research Fund to allow donations to research projects to be made. IiME organised and hosted the fourth annual Invest in ME International ME conference in London in 2009. The focus of this conference was Severe ME, an attempt to raise more awareness of patients with severe ME - a group of patients who were not represented in research trials and completely misunderstood by healthcare services. Prior to the conference Invest in ME arranged for the American journalist, Hillary Johnson, to visit London and give a pre-conference presentation on the evening before the conference to an audience of researchers, clinicians, patients and media people. Hillary’s presentation concerned the USA CDC’s Invest in ME (Charity Nr. 1114035) www.investinme.org Page 12 of 77
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