I just this minute, finished reading Laura Hillenbrand's article, A Sudden Illness in the July 7th issue of the New Yorker. For all of you living on Mars or who don't follow such things, Hillenbrand is the author of the giant bestseller and critical success, Seabiscuit. She also has Chronic Fatigue Syndrome.
The New Yorker article (which very unfortunately, the New Yorker did not archive on-line and so therefore at the time of this writing is unaccessible on-line. grrr...) is absolutely marvelous and earth shattering. I have read numerous essays, articles, discussions, etc., on CFS and Fibro, but more than any other single piece of writing, this one nailed it in spades for me.
And now, I feel so sad and so angry. For myself. And for everyone else that has this disorder. The disorder itself can be devastating - at the very least, it has a very significant effect on one's life. At the worst, it can be absolutely disabling. However, it's not enough that the disorder is a disaster. Oh No. Let's add in Medical Science. Hillenbrand's, very matter of fact and actually humorous accounts of the various MD's she saw throughout the years are dead on accurate.
Everything from quacks who diagnosed everyone they saw with Epstein-Barr and then miraculously cured them (my verson of that experience was the quack I saw, early on, here in Anchorage, who blamed everything on thyroid problems, flouride in the drinking water, lack of zinc, and gasoline additives - needless to say, I walked out of that appointment), to impatient and angry doctors who stated, "I don't know why you keep coming here. All your tests are normal. When are you going to realize that all your problems are in your head." I've had that very conversation, verbatim, more than once. And one of my current medical practioners wonders why I go ballistic about all of this. Fuck.
Fortunately, Hillenbrand had a marvelous shrink who firmly believed her problems were physical in nature and referred her to a specialist at Johns Hopkins who made the CFS diagnosis. She's had an extremely tough road. The article, accurately, I think, paints the picture of CFS. It's up and it's down. It can come on at the drop of hat. It thumps you hard when you least suspect it. And so often, a hard thump is something completely new and different.
And people wonder why we and our loved ones, the people who live with us and support us everyday, are so fucking mad, frustrated, distraught, and depressed about all of this.
7/16/2003 Update: The piece is now available here at the ME Society of America.
9:22:11 PM 
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