Journal of IiME Volume 8 Issue 1 May 2014 Welcome to the 9th Invest in ME International ME Conference 2014 in London – IIMEC9 Inside This Issue 3 Welcome to the Conference 8 9 Sponsors of IIMEC9 Extemporaneous Notes from IIMEC8 Severe ME 10 12 Invest in ME Research Grants LDIFME 13 A Biomarker in Predicting Clinical Response and Disease Activity 17 A Poem for ME Awareness 18 22 27 Crowd funding – 92 Tour Letter from America Importance of Basic Research 34 36 39 50 Perversely Dark Executive Summary for MPs Presenters at IiME Conference Conference Agenda Invest in ME PO BOX 561 Eastleigh SO50 0GQ Hampshire, UK E-mail: info@investinme.org www.investinme.org Member of European ME Alliance Disclaimer The views expressed in this Journal by contributors and others do not All content in the Journal of IiME is copyright to Invest in ME and the authors. Permission is required and requested from Invest in ME before republishing anything in this Journal. necessarily represent those of Invest in ME. No medical recommendations are given or implied. Patients with any illness are recommended to consult their personal physician at all times. Invest in ME was established in 2005 by Kathleen McCall and became a UK charity in 2006. The charity trustees are composed of ME patients and parents of children with myalgic encephalomyelitis - ME. The aim of the charity is to raise the profile of ME by improving the education of healthcare professionals about the disease, by raising awareness of the disease amongst the public and media and by facilitating and enabling an international strategy of biomedical research into the disease. Everyone working for and with the charity is a volunteer and nobody is paid a salary. At our last conference the theme was Mainstreaming ME Research –reflecting our view that after eight years of constant effort we could begin to see the change in emphasis about ME. Now even moribund establishment organisations are being forced to take ME more seriously. The IiME conferences have formed a crucial part of this education. Since our 2013 conference we have seen dramatic progress with our objectives. Our foundation project has begun at University of East Anglia and the Institute of Food Research. This three year studentship will analyse gut microbiota in ME patients. At the 2012 conference we stated that we were working on an attempt to set up a rituximab clinical trial. Following our Biomedical Research into ME Colloquium in London last year we have made rapid progress by partnering UCL in setting up the planned UK rituximab clinical trial. (continued..) Invest in ME (Charity Nr. 1114035) www.investinme.org Page 3 of 52

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