Frustrated by skeptics, doctors rename chronic fatigue syndrome

Laura Hillenbrand has been mostly confined indoors since becoming sick with chronic fatigue syndrome (CFS) more than 25 years ago. The author of the bestselling books Seabiscuit and Unbroken enjoyed a healthy childhood until she suddenly became exhausted in her second year of college. After returning to her mother’s home in Maryland, Hillenbrand visited several doctors who told her the illness was not real. She explained to The New York Times, “When almost everyone in your world is looking down on you and condemning you for bad behavior, it’s very hard not to let that point of view envelop you. … I just began to feel such deep shame, because I was the target of so much contempt.”

According to a recently released Institute of Medicine (IOM) report on CFS, Hillenbrand’s experience reflects that of the 836,000-2.5 million Americans living with the condition. Health professionals often treat patients as if their condition is not serious or even a figment of their imagination. The report proposed changing the name of the disease to “systemic exertion intolerance syndrome (SEID).” The new name “really describes much more directly the key feature of the illness, which is the inability to tolerate both physical and cognitive exertion,” co-author Dr. Peter Rowe said.

The change in nomenclature also aims to move away from the stigma of the name “chronic fatigue syndrome,” chosen by the Centers for Disease Control and Prevention (CDC) in 1988. “Everybody’s had some experience of fatigue, but there is so much more (to the condition) than that,” Rowe said. “Patients with CFS are typically unable to perform their normal activities, and as many as one-fourth are homebound or bedridden,” according to the Journal of the American Medical Association.

The IOM report also establishes simplified criteria for the syndrome. To be diagnosed, patients must have six months of exhaustion after mental or physical exertion, unrefreshing sleep, and a substantial decrease in their ability to function at pre-illness levels. They must also experience either cognitive impairment or the inability to stand upright for more than a short period.

The cause of SEID remains unknown. Symptoms may be triggered by an infection or a preceding event such as anesthesia, physical trauma, or immunization. No known cure or prescription drug has been developed for the condition. The CDC recommends that patients with SEID work with their doctors to address symptoms and effectively manage daily activities.

For Laura Hillenbrand, her physical limitations have come to contribute to her distinctive writing style. For instance, vertigo prevents her from reading library microfiche of old newspapers during research. Instead, Hillenbrand buys vintage newspapers off the internet and leisurely reads them like she would the morning paper. In this way, she becomes absorbed in the historical period she is writing about, skillfully evoking that world for her readers.