Saturday, April 13, 2013

HAWMC Day 14: Myalgic Encephalomyelitis Activist Heroes

M.E. Activists are a special kind. As patients, as if the illness wasn't harsh enough, we face stigma and government who do not get impressed quickly. And as non-patient, it takes much dedication to fight an impossible battle.

Today, I would like to highlight and thank 2 special M.E. activists who have been going the distance for all patients in the last few months.

Robert Miller is a long time patient who has taken on to speak up and walk the walk, so to speak. He has been receiving Ampligen on and off, a drug that has been stalling in clinical trials for over 2 decades. Just recently, the FDA refused approval of Ampligen once more, a blow for patients who have been helped by this drug and who have relapsed when off it. Robert has been fighting fiercely, literally risking his life by starting a hunger strike in order to get his voice heard on our behalf. Last news I heard about him he was in Washington DC for meetings with government officials.

Robert, I want to thank you and command you for your efforts. They do not go unnoticed. You are a hero! Bob is on Twitter: @bobmiller42

The second person I would like to highlight is journalist Llewellyn King, whose resume is quite impressive, and for fear to leave any important bits behind, I am copying from his White House Chronicles website, available here:

Llewellyn King’s long and remarkable career in journalism began in Southern Rhodesia (now Zimbabwe), where he was born and raised, as a 16-year-old foreign correspondent forTime, UPI and two London newspapers, The Daily Express and The News Chronicle.
Before starting his own publishing group, King worked for a pantheon of British and American media outlets. As editor in chief of The Energy Daily, King Publishing Group’s flagship newsletter, he became renowned for his incisive reporting and commentary on the energy industry, and for his public speaking panache.
In chronological order, here is how King’s career has unfolded:
London: Executive, The Daily Mirror Group; reporter, Associated Newspapers; scriptwriter, BBC and ITN
New York: Assistant editor, foreign desk, The New York Herald Tribune; founder, Women Now, a monthly magazine targeted to emerging businesswomen in the 1960s
Baltimore:Copy editor and feature writer, The Baltimore News-American
Washington, D.C.: Assistant foreign editor, assistant travel editor and culture editor, The Washington Daily News; assistant editor, The Washington Post; Washington editor, McGraw-Hill’s Nucleonics Week
Founder, publisher, editor in chief, The Energy Daily; chief executive officer, King Publishing Group, whose award-winning newsletters, almost all of which he founded, included The Energy Daily, Defense Week, Navy News & Undersea Report, New Technology Week, Food & Drink Daily and White House Weekly
Host, “The Bull & The Bear” on the GoodLife Television Network and Jones Television
Founder, executive producer and host, “White House Chronicle” on PBS; regular contributor, Voice of America; contributor, CNN, C-SPAN, PBS (“The NewsHour with Jim Lehrer”), NBC (“The Today Show,” “Meet The Press”), Westwood One (“The Jim Bohannon Show”), American University Radio (WAMU 88.5) and RTE (Ireland’s national radio and television broadcaster)
Regular commentary contributor to McClatchy newspapers; occasional contributor to newspapers and journals, including London’s Financial Times; and nationally syndicated columnist, North Star Writers Group
Author, “Washington and the World: 2001-2005” (University Press of America, 2006)
Stevens Institute of Technology awarded King an honorary doctorate in engineering, for his contribution to the public understanding of science and technology.
King has given more than 1,500 speeches, organized more than a thousand conferences, and traveled to over a hundred countries.
Mr King has a dear friend suffering with ME and decided to learn more about the disease and to get involved in the best way he knew, through journalism.

Mr King produced (and still producing) a serie of videos called ME/CFS Alert. They are short interview with physicians who treat us, researchers and even patients.  And more recently he has published a very touching piece about ME called Chronic Fatigue Syndrome: Hidden in Plain Sight and very worthy of your time.

Mr King, I cannot thank you enough for speaking up on behalf of millions around the world. You too are a hero.

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