A Town for People with Chronic-Fatigue Syndrome | The New Yorker

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https://www.newyorker.com/culture/personal-history/a-town-for-people-with-chronic-fatigue

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 3, 2019

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.

More at the link: https://www.newyorker.com/culture/personal-history/a-town-for-people-with-chronic-fatigue
 

Silencio

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This guy is hyper focused on Ampligen. It's not something I see discussed too much around here...
I know.. It read like it was written 20 years ago. Was so surprised that it was actually the account of a millennial.

And, god, I’m sick of the all-in-your-head narrative! The more it’s discussed, the longer it’s perpetuated. I wish anyone writing about ME would just drop it. And If the New Yorker gives you that much real estate.. please say more useful informative things about research, and persuasively describe the devastation and suffering caused by this disease. This article made it sound like a bunch of wacky tired people moved to Nevada.
 
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And, god, I’m sick of the all-in-your-head narrative! The more it’s discussed, the longer it’s perpetuated. I wish anyone writing about ME would just drop it. And If the New Yorker gives you that much real estate.. please say more useful informative things about research, and persuasively describe the devastation and suffering caused by this disease. This article made it sound like a bunch of wacky tired people moved to Nevada.
Yes!!!!!!!!
 
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Just read this myself. Interesting that another rna based anti viral drug has some efficacy, but again like Chia the true efficacy appears to be low long term maybe 20% for full recovery. Also like Chia patients are required to take equilibrant or this drug ampligen seemingly for life. Maybe because the infections in those patients cannot be eradicated, merely beaten into smaller pockets. If they were entereoviral that might explain why the disease could come back.

Also interesting how the FDA asked the pharma company who make Ampligen to prove it doesn't cause autoimmune conditions to appear. As Dr Chia quite clearly states that if you take equilibrant/oxymatrine you could switch on auto immune conditions.

Lots of similarities here, including the interferon inducing capability that the drug exhibits in the body. It sounds like amazing stuff, but at a cost of $1000 per month, not surprised nobody can afford to get it. Even so, the fact that Dr Lerner, Dr Chia and this drug appear to have similair efficacy and they are all anti virals is interesting. As we all know highly unlikely to be the root cause for all, but many of us probably are suffering from ongoing chronic infections. @Hip
 

perrier

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I know.. It read like it was written 20 years ago. Was so surprised that it was actually the account of a millennial.

And, god, I’m sick of the all-in-your-head narrative! The more it’s discussed, the longer it’s perpetuated. I wish anyone writing about ME would just drop it. And If the New Yorker gives you that much real estate.. please say more useful informative things about research, and persuasively describe the devastation and suffering caused by this disease. This article made it sound like a bunch of wacky tired people moved to Nevada.
I read this article and became severely depressed.
 

LaurelW

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I was on Ampligen for a total of 7 years (two different times) and it helped me so much! I've been off for 2.5 years now and haven't crashed yet (I'm one of the lucky ones that maintains the gains), but I sure wish it was available just in case (I already had a severe crash once). I testified at the 2012 hearing and was devastated when it wasn't approved. Later I heard that one of the people who voted didn't really know that much about it and if she had, she would have voted for approval. I think it's a crime that a drug that helps so many people is lingering in limbo. I'm convinced that if it was something like Viagra, it would have been snapped up within the first year. But the attitudes surrounding it are like a wall of pea soup that one has to wade through to get to the truth.
I know most of the people mentioned in the article, and they truly need the drug to have a functional life.
 
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The more it’s discussed, the longer it’s perpetuated. I wish anyone writing about ME would just drop it.
Agreed. It just keeps going on and on. These old narratives which never cease.

but I sure wish it was available just in case (I already had a severe crash once)
Yet, we are told insurance never paid for it. That is: tens of thousands of dollars. So who is it gets to have medicine? Only affluent people it seems.
 

LaurelW

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You are correct. I was on their compassionate care program, which meant I got the drug for free (there were very few slots). I got kicked off in January 2016 because they discontinued that program, and I couldn't afford the thousands of dollars to pay for the drug. So now only the people with money can afford it.