Kim Snyder first fell ill in 1994. “It felt like the flu, but there was something eerie about it,” says Snyder, a filmmaker who splits her time between New York City and East Hampton. “There was an ominous, terrible feeling….I was more than dizzy, and I was just scared to death.”
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Nearly a year later, Snyder participated in a study at Johns Hopkins University Hospital. There she was diagnosed with chronic fatigue syndrome, said to affect cognitive functions and multiple body systems. It’s an affliction that’s hard to define, and no one knows the cause–which has prompted some doctors to dismiss it as a psychosomatic illness, or “yuppie flu.” But, says Snyder, “the term ‘chronic fatigue syndrome’ makes it sound like being tired, which it isn’t at all. It’s not about feeling tired or wanting to take naps all the time.
Snyder decided to make a film about CFS, with her struggle providing the framework. She worked on it when she could, which wasn’t often. “I would set an egg timer to see if I could work on a grant proposal for 20 minutes straight,” she says. “It would be so taxing, it would be like going to work out at the gym for three hours.” When she got too sick she canceled filming; at other times she conducted interviews from a wheelchair.
“Most people now and in the early days had to go to a dozen doctors before they got a diagnosis,” says Snyder. “You have to have a certain means to get to 12 doctors.” Jason’s researchers say that almost all those fitting the study’s CFS profile were undiagnosed. “There are a lot of people suffering in their apartments, not able to do much but not knowing why they’re sick or what they have.”
