So, yesterday was the official International ME/CFS Day. Whoo! Hope we're not all too hungover to get back on the computer and reflect on our experiences. I hadn't done any research for it at all, and I was hoping that I could just go to the biggest CFS advocacy sites, and be part of some well-organized Internet campaign. I imagined sleek memes to post on Facebook, petitions and email campaigns all ready to go. I found...very little. Here's what I did.
I put a blue ribbon on my Facebook profile. So did 26 other people. Actually, I just put it on a picture which stayed on my wall because I couldn't for the life of me figure out how to make it my profile picture. Then I wrote an update about CFS Awareness Day. People on Facebook seem more receptive to my posts about webcomics or humorous observations.
I joined this campaign and wrote letters about CFS to the President and others. Real paper letters, sent through the mail. The idea was that they should get there by May 12, but I was sort of late. It's tempting to make fun of writing to the President (i.e. the heartbreaking naïveté of a patriotic third grader, a great excuse to use the word "quixotic") but it really can't be the least effective thing in the world. A sizable staff reads every letter and classifies them by issue, and if mine have now become tally marks by "Chronic Fatigue Syndrome" that's at least something. I'm sure they take into account that for every letter, a thousand more apathetic people kind-of feel the same way.
On a more uplifting note, these six awesome people protested outside the ME/CFS meeting of the U.S. Department of Health and Human Services on Tuesday, demanding government accountability for allowing CFS to go ignored and unfunded for so long. Thanks, guys.
And thus concludes another successful May 12.
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