May 02, 2024

Jaime Seltzer

Jamie Ducharme

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Ducharme is a contributor to TIME.

Jaime Seltzer

Jaime SeltzerGabrielle Lurie—San Francisco Chronicle/Getty Images

For years, U.S. medical schools barely taught their students about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a chronic condition that affects up to 2.5 million people in the U.S., which can develop after routine viral illnesses and causes debilitating exhaustion. Jaime Seltzer—a trained scientist who developed ME/CFS in 2014 and now works as the scientific director for the advocacy group #MEAction—is working to change that.

Through #MEAction, Seltzer is helping to spearhead a major campaign to improve ME/CFS education, diagnosis, and treatment. Thanks to Seltzer’s efforts, staff at big-name institutions including Emory, Brown, and Georgetown are working with #MEAction to improve education programs and treatment plans related to ME/CFS. Those efforts build on a partnership Seltzer made last year with the Mayo Clinic, through which she helped revamp the health system’s public-facing ME/CFS fact sheet and designed an algorithm to help doctors better diagnose and treat patients.

In all of these efforts, Seltzer says, her overriding goal is ensuring that patients’ voices are heard at all levels of the medical system, from academic research all the way to primary-care doctors’ offices. “My science background and my almost decade in advocacy are the machinery that I use to run,” she says. “But the fuel that runs the machine is my devotion and my love for my community.”