THE PUZZLE SOLVER

A renowned geneticist races against time to diagnose a malady that landed at his door.

Chronic fatigue syndrome, or ME/CFS (ME stands for myalgic encephalomyelitis), as it’s now known, was long dismissed as “the yuppie disease,” striking mostly young people. One was Whitney Dafoe, a distinguished photographer and explorer who returned from a trip to South Asia weighing only 115 pounds, with fever, dizziness, headaches, and a host of other symptoms. Fortunately for him, his father was the renowned geneticist Davis, one of the progenitors of the Human Genome Project, who, notes science writer White, “launched a search for the cause and, from there, a treatment and a potential cure for this often forgotten and stigmatized disease.” The diagnostic work often took Davis down blind alleys, for the illness had puzzling manifestations. For example, those who suffer from it often cannot bear bright light or even the sight of bright clothing and shrink at sound, the source of much pain. The National Academy of Medicine had identified some of the other markers—e.g., gastrointestinal disturbance, extreme fatigue, and “brain fog”—along with a condition called “post-exertional malaise,” which could be caused by something as simple as brushing one’s teeth. One insight—and the light bulb for later work in genomics—was that DNA itself could be used to “create genetic markers for identifying and isolating disease genes.” As White reports, with the seriousness of Davis’ research, by which he reached out to other scientists around the world, the medical community began to change its view of CFS; it was renamed ME/CFS by a decision of the Centers for Disease Control in 2018. That insight has pressing applications today given that there is emerging evidence that coronavirus can trigger ME/CFS, as can mononucleosis and other viral diseases—and, she adds, by that evidence, Davis is ever hopeful of discovering a cure.

A complex, well-related story of medical detective work.