Davis suspects the answer to the CFS riddle lies somewhere in its molecular underpinnings. In his lab, researchers are looking for answers in the metabolic system. But he’s exploring all possibilities; other scientists he’s recruited — from Stanford, the University of Utah, Harvard University, the University of California-San Diego and other schools — are lending their expertise to investigate other systems of the body, including the immune system and the nervous system. So far, Dafoe’s blood samples are guiding this exploration — his entire genome has been sequenced.

“New technology is allowing us to cast a really big net,” says Mark Davis, PhD, professor of microbiology and immun­ology at Stanford, who is scanning Dafoe’s infection-fighting T-cells for abnormalities, as well as looking at other aspects of the immune system. “Some would call it a fishing expedition. But fishing expeditions also catch fish.”

The hope is that results from the newly launched trial of 20 severely ill CFS patients from Open Medicine Institute in Mountain View — a medical group practice that conducts research and provides care for patients with chronic illnesses — will increase the size of the net.

“You could say Whitney has been the inspiration for this study,” says Andreas Kogelnik, MD, PhD, an infectious disease specialist and director of the Open Medicine Institute. The study entails going into the homes of the patients to collect biofluid samples — the easily accessible ones like blood, urine, saliva and stool — then comparing them with those of healthy control subjects. This group of CFS patients, who have not been studied before because they are so hard to reach, is likely to show the strongest molecular signals of the disease, Ron Davis says.

Kogelnik, who treats Dafoe and hundreds of other CFS patients, knows firsthand how difficult it is to get research funding for the disease, and how difficult it is to treat patients. Getting someone of Ron Davis’ stature to bring his influence and attention to this disease has made a difference, Kogelnik says. Not only has it helped raise money for this particular study, it’s helped lend legitimacy to a disease that struggles for acceptance. Davis’ technological inventions that have helped shaped the field of genetics over the past 20 years will also make a difference, he says.

“This gene chip was designed in Ron’s lab,” Kogelnik says. He’s in his Mountain View lab, holding a thin, rectangular DNA microarray, or gene chip, between his thumb and forefinger. The gene chip is a collection of microscopic spots of DNA attached to a solid glass surface. It has on it an array of 70,000 different gene components, Kogelnik says, which will allow researchers to test which genes are turned on or off in a specific DNA sample applied to the chip. This technology will be used to test the biofluid samples from the 20 patients in the CFS study. Those results will be shared with CFS researchers. Davis’ inventions have come full circle, returning to help him discover a cure that could save his son.

One recent afternoon, Davis is sitting behind a desk in his office at the Genome Technology Center, preparing to drive home for his afternoon session of caring for Dafoe. He’s dressed in old jeans and sneakers; his gray beard, glasses and kindly demeanor lend him a grandfatherly air. The old, brown hat waits for him on the desk.

But Davis wants to take a moment to tell a story about his childhood. It’s a story of hope. As a boy, Davis used to buy chemicals at the local drugstore to make fuels for the rockets he’d shoot off in the field out back of his house in a rural area of Illinois. Though he had dyslexia, and his teachers and father told him he’d never be college material, he knew his brain could do some pretty cool stuff. At 14, he would sneak into the local college library at night to read chemistry and physics journals, and he’d get his older sister to teach him the advanced math she was learning in school, partly so he could make better fuel for better rockets, but mostly just for fun.

It was a chronic illness — one that left him bedbound for much of his childhood — that ultimately changed the course of his future, diverting him away from rocket science into medicine. Davis contracted a case of rheumatic fever when he was a year old that never really went away. It recurred maybe 200 times during his childhood in the form of strep throat, bringing with it high fevers, painful swollen joints and inflammation. Trapped in bed, Davis would play mind games to distract himself from the pain and the boredom. He’d dream up new three-dimensional worlds to escape into.