Five Facts About ME/CFS: Socking It To ME/CFS

Posted by Cort Johnson

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Written by creekfeet

2287-stripey-toe-sock__1.jpgby Creekfeet

If I could tell the world just five facts about Myalgic Encephalomyelitis (ME/cfs) I might choose these. ME/CFS…

• causes more functional impairment than diabetes, heart failure or kidney disease.
• creates a level of disability comparable to MS, chemotherapy or the final stages of AIDS.
• strikes an estimated 17–20 million worldwide, impairing function and shortening lives.
• like AIDS in its early days, receives inadequate funding due to widespread misunderstanding.
• has only recently gained notice in blood banks internationally as an infectious disease concern.Those five points should make everybody sit up and listen. This disease should top the enemies list for anyone concerned with public health—and everyone who has ever caught the flu has been concerned with public health.

But if I were asked to share five facts about how it affects me, personally, I would say ME/cfs…

• forces my active, gifted 16-year-old child to spend 22 of every 24 hours lying in a darkened room, in too much pain to talk or be touched.
• makes me nearly housebound, light housework often insurmountable, grocery shopping an ordeal I can face every two weeks at best.
• stole my work, house, car, school and community involvement, volunteer activities, social events, travels, sports, hobbies—even most of my reading and writing.
• made my doctors shrug, then write prescriptions that only worsened my condition and my child’s.
• gave me a new cause to fight for.

That last point is the reason I’m sitting up, pushing past pain, to write these words. When I learned how misunderstood and underfunded this disease is, how many people’s lives it robs, how close research is to pinpointing the cause, and how desperately brilliant researchers struggle for support, I knew I needed to use any energy I could muster to fight, somehow.

I thought about the early days of AIDS: victims treated like lepers, mainstream media refusing to cover the story of “gay cancer.” I thought about ACT UP and the AIDS Quilt: how the game changed and people began to care and contribute. “Game-changer” is what journalist Hillary Johnson called the Quilt, and she has called for a similar game-changer for ME/CFS.

Searching, I found an online community called Phoenix Rising, and when my new friend there, Siobhan, said “socks,” I knew I’d found my game-changer. We live in socks and rarely wear shoes. We can’t march, but we’re taking a stand in our stocking feet. We’re gathering decorated, personalized socks—one for every person with ME/CFS, like the panels on the AIDS Quilt—to make our socks march for us.

Everyone has socks go missing. Singleton socks symbolize missing pieces: adequate research funding, appropriate study design, reasonable treatment recommendations, practical support for disabled patients, understanding of the disease on all levels.

We invite everyone to visit and step forward to help us take our stand. Maybe soon we can write a new Five Facts about ME/CFS, starting with the word, “treatable.”

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