Journal of IiME Volume 8 Issue 1 Letter from America cover one advocate/lobbyist, one office and one assistant for one year; not a smidgeon of attention from a giant lobbying firm, but a dedicated ME/CFS standard-bearer. Funding should grow within a year, as the ME/CFS cause comes out of the shadows. I operated a small business in Washington for 33 years, and I am confident that a new ME/CFS presence there will reverse the disease's funding fortunes at NIH, increase media awareness, and cause the big foundations to sit up and take notice. It would give ME/CFS the kind of presence that other diseases with active advocates – COPD, ALS, MS and others -- have in Washingon and the nation. If this is not done the government will continue to ignore the case for ME/CFS. Worse, the new billionaires who are beginning to throw real money into biomedical research will not know about ME/CFS. It will be hidden in plain sight much as it has been from the wider public. ME/CFS needs a place on the national agenda if it is to be understood and cured in reasonable time, and if the very best minds are to be attracted to the task and to stay with it. That Churchill oak needs to be planted now, and in sight of the U.S. Capitol. May 2014 Can I Tell you about ME/Chronic Fatigue Syndrome? This is a book by Jac Rayner. IiME chairman Kathleen McCall has reviewed the book for the publisher and included the following comments - "This book is very clear and easy to read. It is a great resource that can be used by ME patients and their carers to explain and inform others what it is like to be affected by ME/CFS. Not only children but adult relatives, friends and teachers would learn a great deal from this book." Available on Amazon at this link http://www.amazon.co.uk/tellabout-Chronic-Fatigue-Syndrome/dp/1849054525 Jac's book is also to be translated into Norwegian. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 25 of 52

26 Publizr Home

You need flash player to view this online publication