To: The United States House of Representatives and The United States Senate
Stop ME/CFS Discrimination
Over the last thirty years, the 1-2.5 million people in the United States with Myalgic Encephalomyelitis (otherwise known as chronic fatigue syndrome) have faced relentless and life-threatening discrimination from HHS. As a result, we demand that the government increase our funding to approximately $250 million annually, making it commensurate with diseases of similar gravity, such as MS, and reflecting the vast numbers of people affected. Because we are too sick to advocate for ourselves, 25% of us being either bedridden or housebound, we ask that other, empathetic citizens help us fight for health funding equity. Thank you.
Why is this important?
I am a caretaker for a patient-advocate who has had ME for most of her life and who works from bed. Right now, her California ME/CFS specialist wants her to start IVIG and Rituxan, but because every physician in Washington State has been taught that ME is psychogenic in nature, she cannot get the help necessary to save her life. She is having severe autonomic problems and demyelination, but no one will serve her. This happens everywhere in the world and on average, I hear of about five to seven deaths a week from ME.