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:
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.
In chronological order, here is how King’s career has unfolded:
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.