ME/CFS Awareness Day

Sunday, May 12, is International ME/CFS Awareness Day, and for once there is good news. Scientists at Stanford, led by the Nobelist Ronald Davis, have discovered what appears to be the long-sought biomarker for the disease. Like so much related to ME/CFS, Davis was first motivated by a personal encounter, in this case the totally debilitating illness of his son Whitney. Unlike most relatives and patients, Davis did not need to accept the dismissiveness of doctors and psychiatrists who brushed off ME/CFS as "Yuppie flu" or the result of "unhelpful illness beliefs." As the head of the lab that pioneered the Human Genome Project, he was in a position to take the illness seriously and, more important, to do something about it.

Just two weeks ago, Stanford announced the creation of "a blood test that can flag the disease, which currently lacks a standard, reliable diagnostic test." As explained in the press release,

“Too often, this disease is categorized as imaginary,” said Ron Davis, PhD, professor of biochemistry and of genetics. When individuals with chronic fatigue syndrome seek help from a doctor, they may undergo a series of tests that check liver, kidney and heart function, as well as blood and immune cell counts, Davis said. “All these different tests would normally guide the doctor toward one illness or another, but for chronic fatigue syndrome patients, the results all come back normal,” he said.

The problem, he said, is that they’re not looking deep enough. Now, Davis; Rahim Esfandyarpour, PhD, a former Stanford research associate; and their colleagues have devised a blood-based test that successfully identified participants in a study with chronic fatigue syndrome. The test, which is still in a pilot phase, is based on how a person’s immune cells respond to stress. With blood samples from 40 people — 20 with chronic fatigue syndrome and 20 without — the test yielded precise results, accurately flagging all chronic fatigue syndrome patients and none of the healthy individuals.

Davis's son has an extraordinarily severe case of ME/CFS. I urge everyone to read this article, posted today on CNN.com (but be aware that it won't be easy). Here is the gist:

Multiple times a day, every day, Ron Davis sits with his head bowed, waiting outside his son's bedroom for a subtle signal that it's all right to come in.

He opens the door to the space where Whitney has spent most of the last decade.

Whitney lies motionless on a simple bed, his head shaved and his frame emaciated. He's fed by a tube directly into his stomach. His lips haven't uttered a word in five years.

Whitney was an award winning and world-traveling photographer before he became sick. In the early days, when he could still post on his photography website, "Whitney lamented that 'chronic fatigue syndrome' couldn't do justice to his condition. He preferred 'total body shutdown.'"

Remarkably, though sadly predictably, British psychiatrists still cling to the psycho-social model that has subverted meaningful research for the past 30 years, establishing the validity of Max Planck's observation that science progresses one retirement at a time.

Fortunately, the U.S. medical establishment, with a few notable exceptions, has come to a better understanding. The CDC has accepted the 2015 report of the Institute of Medicine, rejecting the psycho-social model and recognizing ME/CFS as a biological illness. In its announcement of International Awareness Day, the CDC said

ME/CFS is a complex, real illness that is difficult to diagnose. Each patient is unique, and requires an individualized treatment program that best meets the needs of their illness. Listen to them and communicate with them in order to deliver effective care.

That may not seem like much, but combined with the Stanford biomarker discovery, it is truly game-changing. Patients have been saying for years that they were not cured by Cognitive Behavior Therapy, and were positively harmed by Graded Exercise Therapy, but the dominance of certain British psychiatrists prevented most physicians from listening. Thanks to Ron Davis and others — including Vincent Racaniello and Ian Lipkin at Columbia, and David Tuller at Berkeley — scientists have started listening and progress is finally being made.

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