It is #MillionsMissing 2019. I would love to write about new jewelry I’ve created or exotic places I’ve traveled, but I am still severely disabled by Myalgic Encephalomyelitis (ME or ME/CFS). The absurdity of protesting from a prone position, because sitting up for long can have frightening consequences, is an evil necessity in order to advocate for reasonable NIH research funding. And with ME, every normal activity can have grievous ramifications. It is a horrifying realization that mental activity triggers the same devastation as physical activity. Going to the doctor can result in being bedbound for days. Perhaps reading a book, watching tv, a visit from a friend or family or even showering will put me in a darkened room, submerged in cascading and terrifying symptoms and wondering if I will recover. On better days, by the time I get up, showered and dressed, I often need to go back to bed again. Will I be lucky enough this time not to suffer severe PEM (Post Exertion Malaise)? It is a cruel and devastating game of craps, only not with dice but with my health, wherein each throw can result in overwhelming catastrophic symptoms which can become permanent. Those of us with ME walk a knife’s edge every day, trying to determine what we can and cannot do. Push yourself too hard and you can become housebound or bedbound, sometimes for the rest of your life.
There’s so much I want to do, travel with my husband, enjoy spending time with my family, revive my jewelry business, go out to lunch with friends, paint, read a book in one sitting like I used to do. It is soul destroying to have the drive to achieve your goals but live in a body that punishes you for the smallest exertion.
ME affects up to 2.5 million people of all ages and socioeconomic groups in the United States alone, with over 80% of them women. This disease causes profound neurological, immunological and metabolic dysfunction, resulting in a level of debility that is on average equivalent to congestive heart failure or multiple sclerosis. Yet the NIH funding for research remains abysmally low, approximately $5 per patient. A similarly disabling disease such as multiple sclerosis receives about $242 per patient per year.
Please help by bringing attention to ME and demand the NIH allot funding for research, clinical trials and medical education commiserate with the burden of this disease. Donate to #MEAction Solve ME/CFS or the Open Medicine Foundation, organizations which include people with ME who risk their own health to raise awareness and funding, along with researchers and clinicians to accelerate the discovery of effective treatments, and ultimately, a cure. You can help amplify our voices.
I am a senior with ME.
I am a retired teacher with ME.
I am a wife, parent, and grandmother with ME.
I am a friend with ME.
I am an artist with ME.
I miss you all.
I am still here.
I am one of the #MillionsMissing.
“[ME/CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University