Stephanie Burgis
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M.E. Special
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I meant to post this yesterday but forgot: the BBC radio show "You and Yours" is doing a week-long special on M.E./C.F.S., and you can download all of the episodes as podcasts. So far, they've been really interesting, especially the roundtable discussion of exactly what M.E. is (which you can download directly as an mp3). It was an interesting discussion because it highlighted how controversial the condition is, even among a group of "experts"; it was fascinating to me for the first-person accounts of other people with M.E.; and it was absolutely maddening, as it highlighted the fact that such a disproportionate amount of funding is funneled into researching ways of managing the symptoms, rather than into figuring out their physical causes and potential medical treatments. (And then the presenter acted really baffled by the fact that so many people with M.E., who've been sick for years with no prospect of a cure or even improvement in their condition, somehow distrust the medical profession's attitude. How ungrateful are we???? Hmmm....) And oh, it made me feel really lucky, too, by comparison to the poor woman who's been bed-bound for seventeen years, since she was 13 years old. Listening to her account made me cry. I am so, so lucky that it didn't hit me until I was 27. I'd been to college, I'd gone around the world and done all sorts of things that were fantasies for me as a teenager. And thank God, I might be house-bound most of the time, but at least I'm not bed-bound, and it's never stopped me writing.

So's an interesting series, and I'll be especially glad if it helps to raise public consciousness about the condition, because the misconceptions are still so wide-spread. (A few months ago I was trying to explain it to a friend I hadn't seen in a long time, describing how I'd had to give up my day-job because of it, and explaining why I might not be able to manage to go to the party she was holding. When she heard the term CFS, she relaxed, laughed and said, "So, that would be another term for laziness, then?" Grrrrr.) (And of course, the funny thing is, after a lifetime of being polite and social, I automatically laughed, too, and only said lightly, "Well, not really," but then hung up without trying any harder. But I haven't actually seen her again since then, and I haven't wanted to.)

(It also turns out that the terminology is seriously politicized. A whole bunch of people are against the term CFS, not only because it doesn't sound that bad - everyone gets "fatigued" from time to time, what's the big deal? - but also because there was a lot of politicization in the first adoption of that term, which may have been partly an intentional attempt to play the condition down. On that basis, I agree that we shouldn't use the term CFS. On the other hand, when I tell people I have ME, myalgic encephalomyalitis, they have no idea what I'm talking about, whereas they have at least heard of CFS...even if what they've heard is horribly wrong, in the "yuppie flu" manner. So I usually compromise by saying CFS/ME, and feel dissatisfied with myself.)

Anyway, I don't want to write a doom & gloom journal entry, especially because things are going pretty well right now. I've got a postcard of Sherwood Forest sitting next to me, not just for general fantasy inspiration, but because it has the first line of a new short story scribbled on the back, and I'm excited about starting it. Yesterday, in Sarah Monette's The Bone Key, I read the creepiest and most chilling ghost story I've read in a long, long time, and it turns out you can read it online on her website: Wait for Me. (When I finished it, as evening was closing in, I decided that that was enough for one day, and I'd better switch to some lighter reading before bed. Needless to say, though, when the lights went out and I closed my eyes, the first things that popped into my head were images from that story!)

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