New Yorker: A Town for People with Chronic-Fatigue Syndrome

I came down with mono in January of 1986 and it was severe for a few weeks and kept me weak until June. I didn’t drop any of my commitments. I kept up with my 15 units at Sierra Community College (got a B average) and my 16 hours a week at the radio stations KAHI/KHYL. Other than that, however, I stayed in bed.

In the summer of 1986, I made a full recovery.

However, in February of 1988, this mono type thing came back and never left. In April 1989, I got the diagnosis of Chronic Fatigue Syndrome and in June I left UCLA and never returned.

Mike Mariani writes:

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.

Over the following three years, I saw a dozen doctors, who prescribed a range of treatments. The internist in Manhattan put me on injections of an amino acid derived from the livers of Argentine cows. On a few occasions, leaving his office, I experienced an energizing high that was either a temporary response to the cow liver or a marvellous placebo effect; it always wore off within a day, and I was later taken off the drug. An endocrinologist gave me a medication that stimulated my thyroid. Some patients resort to folk remedies, like kombucha tea or licorice, or riskier treatments, such as amphetamines or shots of hydrogen peroxide. I tried testosterone creams, antiviral pills, blood-plasma infusions, and so, so many nutritional supplements. Nothing stuck, except the medical bills, and I was running out of specialists in the area who could help.

In 2016, I heard about an internist named Daniel Peterson, who was treating patients in Incline Village, Nevada, with an experimental medication called Ampligen. Few outside the isolated network of C.F.S. patients, caregivers, and specialists have heard of Ampligen, but, within the illness’s sphere, the drug has developed a fabled reputation. In 2012, the F.D.A. provisionally rejected Ampligen’s application for approval, because trial results had not conclusively proved that it was effective; Peterson is gathering more evidence to re-apply. Because data is limited, the drug’s reputation hinges on anecdotal evidence, which should, of course, be considered with caution. But C.F.S. patients are very active in online message boards, and, when I Googled Ampligen, I came across powerful stories about the drug’s effects. In a patient testimony from 1998 that was posted online, a woman named Karen, who was functionally disabled by C.F.S., wrote that, after three months on Ampligen, she was well enough to do her taxes again and go skiing with her son. A blogger named Kelvin wrote on a Web site called The New Ampligen Diaries that, after getting on the drug, he “started to experience a taste of ‘normal’ life—a free life—for the first time in a very long time!” The Web site for the American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society quoted Kenny De Meirleir, a doctor based in Belgium, as saying that eighty per cent of his patients reported “complete clinical recovery” on Ampligen. (De Meirleir later told me that, in fact, only a small subset of his patients had fully recovered.)

About Luke Ford

I've written five books (see Amazon.com). My work has been followed by the New York Times, the Los Angeles Times, and 60 Minutes. I teach Alexander Technique in Beverly Hills (Alexander90210.com).
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