Before he got sick, Whitney Dafoe was an award-winning photographer and a world traveler. He'd helped build a nunnery in India, ridden a motorcycle in the Himalayas and visited all 50 American states.
He also worked on Barack Obama's 2008 presidential campaign, and although he was already ill by January 2009, pushed himself to travel to Washington from his California home to photograph the inauguration.
But now, at 31, Whitney lies in bed in a darkened room in his parents' home, unable to talk, walk or eat. He is fed intravenously and is barely able to tolerate light, sounds or being touched. His parents and the medical personnel who see him wear plain clothing when they enter his room because bright colors, shapes or any kind of print make him feel even worse, as does any movement that he's not expecting.
"It's hard to explain how fragile he is," says his mother, Janet Dafoe.
This isn't the picture that people imagine when they hear "chronic fatigue syndrome," which is often viewed by the public and the health-care community as a trivial or primarily psychological complaint.
In a February report, the Institute of Medicine gave the illness a new name — systemic exertion intolerance disease. Many patients have long criticized the name "chronic fatigue syndrome" for not reflecting the seriousness of the illness. The new name, some say, is not much of an improvement. Some patients call it by an older name, "myalgic encephalomyelitis." Most official documents refer to it with a compromise term, "myalgic encephalomyelitis/chronic fatigue syndrome," or ME/CFS.
The IOM report notes that doctors often lack understanding of the condition and are often skeptical that it is a true medical condition, believing instead that it's partially or wholly psychological.