Five Facts About ME/CFS

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 1720 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 healthand 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, hobbieseven most of my reading and writing.
made my doctors shrug, then write prescriptions that only worsened my condition and my childs.
gave me a new cause to fight for.

That last point is the reason Im sitting up, pushing past pain, to write these words. When I learned how misunderstood and underfunded this disease is, how many peoples 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 Id found my game-changer. We live in socks and rarely wear shoes. We cant march, but were taking a stand in our stocking feet. Were gathering decorated, personalized socksone for every person with ME/CFS, like the panels on the AIDS Quiltto 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 www.SockIt2MEcfs.org 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.

Comments

Excellent post, creekfeet. Thank you for articulating this so well. May the socks multiply like bunnies!
 
Indeed, my sailcloth socks will follow ;) You have such a way with language, Creek, hats off to you.
jace x
 
Very good post. (Where do all the lost socks go, by the way?, That is a mystery of life as big as the cause of CFS :))
 
Great post creekfeet! I had seen the reference to socks before but didn't know how it worked. I'll be checking it out now!
 
Thanks, all! I'm working against a crash right now trying to get some publicity out, but it looks like this thing is taking off with only the slightest push already over 675 visits to www.SockIt2MEcfs.org in one month, and that's without any publicity beyond a handful of organizations within the ME/cfs community. Wow!

Speaking of the community, I want to add that working on this project has been great for me, as I've discovered the existence of more and more great organizations, sites, blogs, people working to promote ME awareness and action. This is really exciting to know.

But it hits me again how badly we need a "game-changer." It took me not only getting the illness myself but working for a couple of months on a project before I found out about a lot of these efforts in the ME/CFS community.

We need more things like the youtube video by Starry Eyes, the Awareness Day events, and perhaps Sock It 2 ME/cfs: things that will get public attention beyond our community. We need to be out in the streets and since we can't be, our socks are gonna be.
 

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