Myalgic Encephalomyelitis (ME) Patient
5/25/16 Washington, DC #MillionsMissing Protest Speech Transcript
In April of 2011, I was thriving and loving life. At the peak of my career, working my dream job in the U.S. Foreign Service, only 39 years old but already the equivalent of a Colonel in the military, I was successful, healthy, athletic, and social, with a husband and three wonderful children. All that changed, and my entire world came crashing down, when I developed the severely debilitating, chronic, neuro-immune disease Myalgic Encephalomyelitis (ME).
Within months after developing ME, I became like a patient in a coma. I couldn’t walk. I couldn’t speak. I couldn’t brush my teeth. I couldn’t watch TV, or even sit up and eat without help. Yet I was alert and suffering. I was evacuated from my Foreign Service post in Honduras, here to Washington, DC. My doctor in DC was one of the best there is… He told my mother and me that I’d be better off dead. He said the medical field knew almost nothing about ME, except there’s no treatment and no cure. The U.S. Government promptly curtailed both my and my husband’s jobs. My family was evicted from our home in Honduras, from our community, from the country where we were living. A few days later, my husband left us.
My children were aged 6, 8, and 10. We were all devastated beyond belief. How could a barely-known disease appear out of nowhere, and in just months, steal my life, my job, my financial security; rob my kids of their mother first and then their father; shatter our family; snatch away their school, their friends, and even their pet, that we had to leave in Honduras; and destroy everything I had ever wanted or worked for in life? The disease ravaged not one, but six lives. It converted me from a happy, healthy, social, active, prosperous, and successful career woman, wife, and mother, into a barely-functioning, disabled, single parent, struggling to survive and support my three kids on disability payments, uprooted and in a new place, with zero doctor or medical guidance for even the most basic care.
…You know the rest if you have this disease. You get a tiny bit better, so that maybe you can talk for a couple hours a day, but the rest of your life is in bed, suffering, missing out on life, like the people who have all of these shoes here today, and the millions in our country who have this disease.
Over the past 30 years, there has been a horrifying lack of medical and scientific attention to ME. Between 836,000 and 2.5 million Americans are afflicted with this horrific disease. We have some of the best specialists in the world studying it. Dr. Ian Lipkin, who’s the Director of Columbia University’s Center for Infection and Immunity – he’s been called the top virus hunter in the world — says, “we could solve ME in 3-5 years, with the right resources.” Stanford [University] says the same. Dr. Jose Montoya: “…with more financial resources committed… we will know the answer [to ME] in 5-10 years.” All we need is the money.
We need the Department of Health and Human Services to allocate more resources. We need… NIH to study ME and to put it in one of its institutes so it can get some funding. It’s a debilitating, chronic, neuro-immune disease. And we need these things, to spur long-stalled efforts to alleviate the suffering of millions of Americans, patients and families, and make finding a cure a real possibility. Thank you.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the