Scientist Tackles 'Last Major Disease We Don't Know Anything About'
Whitney Dafoe no longer walks, talks, or eats, and is fed intravenously
By Elizabeth Armstrong Moore,  Newser Staff
Posted Oct 18, 2015 10:35 AM CDT
This is a photo of a slide during a presentation by the Committee on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome report at the Institute of Medicine in Washington, Tuesday,...   (AP Photo/Susan Walsh)

(Newser) – Whitney Dafoe packed a lot in his first quarter-century of life. The son of renowned scientist Ronald Davis, the head of the Genome Technology Center at Stanford University, was an award-winning photographer who traveled the world and worked on Obama’s 2008 campaign. Now 31 and diagnosed with systemic exertion intolerance disease, aka chronic fatigue syndrome, he no longer walks, talks, or eats—instead sustained by a feeding tube, reports the Washington Post. Davis, who is 74, hopes to tap Stanford's technology to study the disease, which some still don't take seriously, in unprecedented detail. Denied funding by the NIH, he's recruited three Nobel laureates and raised more than $1 million for his project, while patients themselves are running crowdfunding campaigns to help this and other studies, reports the Atlantic.

"It's probably the last major disease that we don’t know anything about," says Davis, whose plan "is to collect more data on a group of patients than has ever been collected on a human being before, by orders of magnitude." Starting with home visits to a few dozen very ill patients to take blood, fecal, sweat, and saliva samples, he'll run a litany of tests using mass spectrometry and DNA and RNA sequencing and then conduct the same tests on those less affected by the disease as well as those with other fatigue illnesses such as lupus to look for anomalies—biomarkers to show that something is "uniquely wrong," Davis says. As for what's wrong, Dafoe described it a couple of years ago on WhitneyDafoe.com: "It's like "staying up for two nights in a row while fasting, then getting drunk. The state you would be in on the third day—hung over, not having slept or eaten in 3 days—is close, but still better than many CFS patients feel every day." (See why the Institute of Medicine called for a name change.)