Journal of IiME Volume 8 Issue 1 Letter from I consider this a manifesto for the ME/CFS community. These are my thoughts, after nearly five years of watching the anguish and the neglect that surrounds this disease. The manifesto states what I think should be done now. And “now” is an important word. There is a story that Winston Churchill, when he was very old and sick, summoned the gardener at his beloved country home in Kent, Chartwell, and asked him to plant an oak tree in an open space. The gardener, looking at his enfeebled employer, swallowed and said, “But, sir, an oak tree takes a hundred years to grow.” “Then you'd better plant it now, hadn't you?” said Churchill. During World War II, Churchill used this same execution imperative approach to work. Churchill used to stick little, pre-printed notes — long before the days of Post-it notes -- on his paperwork for staff that read, “Action This Day.” One of the first things that struck me about ME/CFS, when I started writing and broadcasting on the subject, was how slow the pace of progress was, even as the suffering suggested the need for immediate action. The second was how stingy public and private funding for research was then and is now. I want my friends and loves, who are in the grip of a relentless affliction, whose days are torn from the calendar of hell, to be cured in my lifetime -and I am 74. I want to be able to hold them as whole happy people; the people they were before they were struck down by an enemy they did not provoke, a monster they do not deserve, an unseen captor, a malicious jailer that takes daily life and makes it into a tool of torture and punishment. One year, the CFIDS Association of America was able to declare proudly that it had raised $2 million. The National Institutes of Health, a federal agency that should be pushing research, granted a paltry $5 million for ME/CFS in 2013. By comparison, in that same year, I learned that a consortium of foundations was sponsoring a green power marketing initiative at $6 million a year. I have spent nearly 50 years writing about federal funding for energy, science and technology, and the sums of money spent has been in the tens of billions of dollars. One company gets more than Invest in ME (Charity Nr. 1114035) www.investinme.org Page 22 of 52 America ME/CFS Manifesto Llewellyn King A ME/CFS Manifesto Invest in ME contacted Llewellyn King to ask for permission to republish this article – as it chimes so well with the views of the charity regarding progress, obstructions to progress, and the need begin sowing the seeds of change. Llewellyn King is executive producer and host of “White House Chronicle” on PBS, a columnist for the Hearst-New York Times Syndicate and a commentator on SiriusXM Satellite Radio. He is the co-host of ME/CFS Alert on YouTube. king@kingpublishing.com May 2014

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