It all began for Hillenbrand the evening of March 20, 1987. She was then a sophomore at KenyonCollege in Gambier, Ohio, a straight-A student with hopes of becoming a history professor. She had always been active, riding horses since age 5, swimming competitively (100-meter backstroke) in her suburban Maryland high school, biking and playing tennis in college. She’d eaten at a restaurant that day, and by nightfall was doubled over with pain—food poisoning, she figures. “I was so sick we called paramedics,” she says. For three weeks she was miserable, then awoke and couldn’t sit up. “Even if the building had been burning down, I wouldn’t have been able to get out of bed,” she says. She returned home to Bethesda, the Washington, D.C. suburb where she grew up, and spent the next two years virtually bedridden.
Frustration with medical practice is a frequent side effect of chronic fatigue syndrome, and Hillenbrand would see seven internists and numerous specialists who attributed her illness to Epstein-Barr virus infection, a sinus infection, bulimia and, though she was 20, the onset of puberty. Some said the problem was all in her head. “‘Couldn’t handle school so dropped out,’” she says one physician noted. Looking back, Hillenbrand says she doesn’t blame the doctors for not identifying her illness, given that so little was known about it at the time. “But I do blame them for making assumptions about my character and implying that I was somehow responsible for this illness.”
Finally, a physician at the Johns Hopkins University School of Medicine in Baltimore diagnosed her correctly. She recovered somewhat and started working as a freelance magazine writer, often covering horse racing. In some ways, her experience was typical: about half of chronic fatigue patients recover significantly within the first five years of succumbing, according to the CDC. Overall, though, Hillenbrand’s illness has been more severe than most cases, she says. In 1991, she had a relapse, becoming even sicker than before. “I spent two straight years lying in bed staring at the ceiling,” Hillenbrand says.
In nearly two decades of searching for the cause of chronic fatigue syndrome, researchers have turned up no definitive answer; some believe that the disorder has multiple causes, perhaps as heart disease does. But there are leads. The 1980s-era theory that chronic fatigue syndrome was caused directly by the Epstein-Barr virus, the infectious agent behind the fatiguing disorder known as mononucleosis, has turned out to be partially true. That virus and others seem to play an indirect role in the disease. In a study of 250 Londoners with either mononucleosis or an upper respiratory tract infection, 9 percent of the mono patients were diagnosed with chronic fatigue syndrome six months after first becoming ill, whereas none of the patients with upper respiratory tract infections developed the affliction. The study, led by researchers at St. Bartholomew’s Hospital in London and published last year in the Lancet, is the first conclusive evidence that a viral infection can trigger chronic fatigue syndrome.
In addition to infectious mononucleosis, studies suggest that two other infectious illnesses—Q fever and RossRiver virus—can lead to chronic fatigue syndrome. To learn more about the risk factors that make people susceptible to chronic fatigue syndrome, the CDC is funding a study that will track patients in the Australian state of New South Wales who contract Q fever, RossRiver virus or infectious mononucleosis.