Support the Fight for M.E. Equality
Team Member: Ben HsuBorger
September 20, 2016
Will you join me in supporting MEAction’s global #MillionsMissing campaign? #MillionsMissing seeks to fight for health equality for patients with Myalgic Encephalomyelitis (ME), commonly called Chronic Fatigue Syndrome.
This summer I left my job in state government to go work for #MEAction, an online grassroots organizing platform for patients with ME, many of whom live confined to their beds and homes isolated from other people. For decades, people living with ME have been pushed to the margins of medicine with virtually no access to treatment or research. Today there is still no FDA-approved treatment available.
I know this because I’ve lived with ME for 11 years, ever since catching a run-of-the-mill virus on a trip to Guatemala in 2005. In the early years I was mostly able to hide my condition from others. My life was severely restricted, but I kept working and only a few close friends knew that I was sick. I met, and eventually married, my amazing wife Esther. I was even able to occasionally travel internationally. Doctors told me there was nothing that could be done about my condition, and all the tests they ran came back normal. Some suggested it would eventually go away. Others hinted that maybe it was all in my head.
So, for a long time I tried to keep my disease under wraps and invisible. Over the years my condition has worsened, and I find I’m missing from more and more areas of life—from simple activities like spending an evening with friends or attending a church service; from larger dreams like graduate school and raising a family. Over the years I’ve begun marking my life by new milestones. I now use a stool to shower and sometimes a cane for walking. I now carefully ration the number of steps I take. My brain no longer works like it used to, so that I have to curtail phone calls and abandoned reading books or long articles. Even on a good week I’m 90% housebound.
In fact, many other people living with ME have it much, much worse. More than 75% are unable to work even part-time. For moderate to severe patients, living with ME is like living with late-stage cancer, advanced stage AIDS, or congestive heart failure for decades. Yet research funding for ME is about the same amount as research funding for hay fever. Decade after decade this disease has remained misdiagnosed, underfunded, and misunderstood. But now with the #MillionsMissing campaign ME patients are demanding health equality for this disease.
It took my condition worsening to connect me with the millions of other ME patients who struggle every day to hold on to their lives. I have lost much physical and cognitive function, but I have gained an incredible community, who have shown me that change won’t happen unless we demand it together. We raise our voices together to ensure that the millions of people missing become seen again. That research funding and medical education continue to progress. That future generations never hear, “You have ME. There’s nothing we can do.”