10 Days to DC
Yesterday was ME Awareness Day. That stands for Myalgic Encephalomyelitis, otherwise known as chronic fatigue syndrome. My recent article about ME/CFS went live on SheKnows today, and I’ve spent the morning glancing at the clock, counting down the minutes until it went up. I’ve been freelancing for a year, and I haven’t done this act of anxious anticipation in a long time.
Because this is my friend Whitney:
That tube coming from his stomach is how he eats. Up until recently, he could only tolerate getting nutrients through an IV. The tube in his stomach is an improvement.
Those headphones are on his ears because he risks completely shutting down at the sound of speech–even his own mother’s voice.
My article quoted a friend of mine, Justin Reilly:
“A brilliant physician I knew was one of the top public health officials on the AIDS crisis at its height,” says Justin Reilly, who has both Lyme disease and ME. “He said to me: ‘The CDC did the same thing to the AIDS patients as they are doing to you: They put their absolute worst people on it and ignored it as long as possible. But then people started dying grisly deaths in big numbers, and it wasn’t feasible to ignore it anymore. Unfortunately for you, your death will not be as grisly or swift.’”
Whitney has been bed-ridden for almost three and a half years. He hasn’t been able to speak in the same amount of time. He hasn’t experienced any major improvements since the Fall of 2014, the last time I heard from him.
In 10 days I’ll get on a plane to fly a red-eye to Washington, D.C. I’ll finally meet my friend Ryan Prior in person, who wrote and co-directed Forgotten Plague, and Travis Preston, who edited it. For the last month, I’ve been directly involved in the goings-on of the Blue Ribbon Foundation, the non-profit that backed Ryan’s documentary. Saying I’m excited doesn’t even touch my feelings over the opportunity to attend a screening of Forgotten Plague, especially one where Ryan’s in attendance and able to answer questions afterwards.
The next morning, the three of us will head to D.C.’s Department of Human and Health Services, where we will participate in the protest that is also launching the #MillionsMissing campaign.
From the protest PR Committee:
On May 25, 2016, at the #MillionsMissing demonstrations, Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients and families, advocacy organizations and individual activists call for the US Department of Health and Human Services to implement the following list of demands.
Our goal is to give the 1 to 2.5 million i disabled American ME/CFS patients their lives back, and to prevent even more children, teens, young adults and adults from joining the ranks of the millions who are already missing — missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. Millions of dollars are also missing from ME/CFS research, and millions of medical providers are missing out on proper clinical training to diagnose and help patients manage this devastating illness.
For ME/CFS patients and their families, we demand:
1. Increased Funding and Program Investments
Funding and program investments commensurate with the disease burden
2. Clinical Trials
Clinical trials to secure medical treatments for ME/CFS
3. Accurate Medical Education
Replacement of misinformation with accurate medical education and clinical guidelines
4. A Serious Commitment
HHS leadership, oversight and a serious commitment to urgently address ME/CFS
Whitney has been in my heart a lot this week. The task of raising awareness and funds to properly research his disease seems insurmountable. Knowing how many people suffer in silence, multiplied by the number of people who are suffering without a diagnosis, isolated, alone, and without any support, is a deep pool of heartache that I actively fight to not fall into.
Because of that, it’s easy to get overwhelmed. I spent today pitching editors (and even emailing back and forth with a couple who had suggestions!) articles about Whitney and ME/CFS, but for the last week I had to pull back from the volunteer work I do. I knew if I kept going at the rate I was, by the time the protest came, I’d be too run-down to bring add any energy to the events.
But here we are, on to the final countdown. 10 Days to DC.
I’ll see y’all there.
Thank you so very much Stephanie for all that you have been doing to help us. I’ve been sick since I had mono and a severe strep throat at age 17. I’m 50 now and have been bedridden for about the last decade. I rarely post; the internet is too fast and overwhelming for me, and words and sentences and broken memories of conversations, spin around in my head like my head is a blender for days afterward; draining me. It’s hard to have so much to say and to actually have it hurt me to say/write it. It’s best to keep my mind quiet in certain ways but I wanted to write today to thank you, Whitney, the Davis/Dafoe family and the Open Medicine Foundation. I’m extremely grateful for all that you are each doing for us. We desperately need to get substantial funding for the Open Medicine Foundation. Thank you for representing the sickest among us, giving us a voice, research and hope. My shoes are on the way to Washington, D.C. and the purchase; like all of my purchases at Amazon, supported the Open Medicine Foundation.