Renowned geneticist has spent the past 12 years focused on the disease that has taken so much from his son
Ron Davis, a genetics pioneer at Stanford Medicine, has spent more than a decade studying ME/CFS, driven by his son Whitney Dafoe’s severe illness. Dafoe, who once relied entirely on a feeding tube and remains largely bedridden, has recently shown some improvement from an off-label medication, though he is far from cured.
ME/CFS affects at least 3.3 million people in the United States, yet treatments remain limited to symptom management, and federal research funding has been sparse. Many patients encounter disbelief from medical professionals. Since 2013, Davis has relied largely on private donations to launch extensive research, including a major “big data” project profiling severely ill patients and healthy volunteers. Completed in 2018, the dataset revealed numerous metabolic abnormalities.
Davis’ research points to disruptions in metabolism, possibly triggered by infections that permanently alter energy production via the metabolite itaconate. He also sees parallels between ME/CFS and long COVID. Another line of investigation focuses on nitric oxide production and related gene mutations.
Despite the need for further testing, Davis is encouraged that existing drugs target these pathways. A few patients have improved on a JAK-STAT inhibitor, giving him hope that ME/CFS might ultimately be treatable.
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