Disease in search of a cure

No, I am not referring to Trumpism.  That disease has a name, and “doctors” are working on a cure.  I am talking about a disease that does not even have a name, a test, or a known cause, let alone a cure.

As a term, “Chronic Fatigue Syndrome” is diminishing, demeaning, and deceptive, immediately conjuring up the pejorative “yuppie flu,” in the long tradition of diagnoses like “hysteria” and “neurasthenia,” which tell the sufferer, “It’s all in your head.”

Some prefer “Myalgic Encephalomyelitis,” which is both obvious and obscurantist, neither describing nor defining what the disease really is.

Whatever it is, my daughter Rachel has had it for more than ten years.  And whatever it is, it’s not all in her head, but the post-viral result of a damaged immune system.  The symptomatology is clear enough, and the large number of sufferers worldwide, perhaps millions, has begun to emerge.

One effective spokesperson is Jennifer Brea, whose film Unrest has just premiered at Sundance, to good reviews.  You can get a good feel for the film by watching Jenn’s galvanizing TED talk.

Rachel’s loyal longtime boyfriend Alex Lipschultz also had a film premiere at Sundance, Menashe, on which he served as producer and screenwriter.  IndieWire named it among the best films of the 2017 festival.  It has been picked up by A24, the distributor of Moonlight and other distinguished films.

I also take this opportunity to point you toward one of my “Selected Essays” on this site, “Rachel’s condition.”

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Author: Steve

Steve Satullo grew up in Cleveland OH, attended Williams College, and has spent the rest of his life in the Berkshires of Massachusetts. Ran Either/Or Bookstore for 17 years, and has been affiliated with Clark Art Institute ever since, so definitely qualifies as a book (plus film and museum) person, but has always self-identified primarily as a writer and editor, now with four blogs active.

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