Monday, July 20, 2015

Myalgic encephalomyelitis

Lately, though, my love for your august institution has been strained. You see, I've been felled by the most forlorn of orphan illnesses. The most accurate name for it is myalgic encephalomyelitis, which means "painful inflammation of the brain and spine." (Yes, it is painful, and, yes, there's strong evidence of neuroinflammation.) At the NIH and elsewhere, it is instead called chronic fatigue syndrome. That's a terribly vague and dismissive moniker for so serious an illness, and one that needs to be retired. Fatigue is not the primary or most troubling symptom for most people with ME.

In the past, you've shown a soft spot for certain orphan diseases. Well, the history of ME is akin to having locked an entire orphanage in a cellar and bulldozing the house.

On the list of illnesses the NIH studies, ME (listed as “ME/CFS”) is near the bottom in funding, ranked 231 out of 244. It received $5 million in 2014, less than hay fever, which cripples no one. That’s not enough money to equip a laboratory and run it for a year. This abject neglect – or sustained prejudice, or maybe both – stretches back a full three decades at the NIH (For a detailed history of how this sad state came to be, read Hillary Johnson’s deeply-reported book "Osler’s Web.").

No one has a good count of ME patients in the United States – the Centers for Disease Control and Prevention misspent funds earmarked for this purpose – but there’s plausible evidence that several hundred thousand people are disabled by it. That’s comparable to the burden of multiple sclerosis – the illness ME most closely resembles...

Diagnosis can be delayed for years, and misdiagnosis is common. (I was initially diagnosed with West Nile virus infection, a mistake due to a faulty blood test.)...

Lipkin’s operation gets a big chunk of that not for ME/CFS research but for finding viruses such as those that cause SARS and MERS. But when the famous virus hunter applied for a trifling $1 million for ME research, the NIH turned him down, twice. So spurned, Lipkin and colleague Mady Hornig recently resorted to eating habanero peppers to raise money as part of a social media ME Chili Challenge inspired by the hugely successful ALS Ice Bucket Challenge...

A year before I fell ill, I backpacked Rocky Mountain National Park. My legs carried me up to the Continental Divide, where I sat on the edge of a precipice marveling at the peaks around me. At nearly 13,000 feet above sea level, the thin air addled my thinking - a feeling I now live with every moment, as if someone has poured molasses into my ear, gumming up all trillion synapses. It's a terrible way to go through life, especially so for someone who not so long ago made a good living with his brain.

Here at my home in Hawaii, there's a smaller mountain behind my yard. It's called Sleeping Giant, and the giant's forehead juts less than 500 feet above my patio. A well-trod trail carries people up there for sweeping views down the volcanic slope and across the endless Pacific. Oh, how I would love to drink in that view. But I may as well be gazing up at K2; a summit attempt would be supremely unwise: A sophisticated exercise test found that I suffer from severe metabolic, cardiac and pulmonary dysfunction. Exercise for ME patients is more damaging than sugar is to a person with diabetes.

At 43, my productive life may well be over. There's a good chance I have hiked my last trail.
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