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A US Town For People With Chronic Fatigue Syndrome

Wednesday 4 September 2019


From The New Yorker:


Incline Village house
A house in Incline Village.

A Town for People with Chronic-Fatigue Syndrome

Patients moved from all over the country to Incline Village, Nevada, for an experimental drug. Then the drug disappeared.

By Mike Mariani
September 4, 2019
© 2019 Condé Nast.

In December of 2012, I came down with what at first looked like a bad case of mononucleosis. I felt tired and had a sore throat, a cough, and a slight fever. At the time, I was twenty-six and working as an adjunct English professor at a small college in Westchester, New York. It was Christmas break, so I thought that I would sleep it off and feel better by the New Year. But over the next few months my symptoms grew to include muscle pain, migraines, and occasional vertigo. The cough went away but the tiredness got worse, and by the summer I was spending half my time resting in bed. I was used to playing pickup basketball several times a week after work, but now a few pushups left me exhausted. I couldn’t figure out what was happening. One afternoon, as an experiment, I went for a run near my apartment, in uptown Hoboken. I clipped my iPod Shuffle to my mesh shorts and jogged past Italian delis with dry-cured sausages in their windows and along a pier that hugged the Hudson. It felt amazing. But the next day, while grading papers with a few other teachers, suddenly, I became dizzy and weak. I left the office without explanation, and, for the next several days, I barely left my bedroom.

After a year of these symptoms, I visited an internist in Manhattan, who gave me a diagnosis: I had chronic-fatigue syndrome. According to the National Academies of Sciences, C.F.S. (sometimes referred to as myalgic encephalomyelitis) affects between eight hundred thousand and two and a half million Americans and is characterized by extreme exhaustion. Patients with severe cases are bedridden for years and rarely move or speak. Doctors are still not sure what causes it. For decades, many thought that it was psychosomatic. (My symptoms were so odd that, over the preceding year, I, too, had wondered if I was going crazy.) This sense lingers in popular culture. In the pilot episode of “House,” from 2004, a patient comes to the clinic complaining of C.F.S., and Dr. House successfully treats him with mints from the vending machine. In a standup set in 2007, Ricky Gervais joked about people who say they have C.F.S. because they “don’t feel like going to work.” Today, though, most doctors who study C.F.S. think that its symptoms are caused by a dysfunction of the immune system, which is typically triggered by an infection, such as the Epstein-Barr virus (which causes mono) or viral encephalitis. Still, they don’t understand why, even as most people bounce back from these ailments, a small percentage of them never recover. Because there’s no clear biological cause, doctors recognize the disease by gauging symptoms subjectively, which makes diagnosis, in the eyes of skeptics, unreliable, and has kept away funding for research. There are currently no F.D.A.-approved medications to treat C.F.S.


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