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.”
Snyder’s condition got worse and she ended up flat on her back, unable even to follow a TV show. She says she went for months without sleeping more than three or four hours at a time. Though she was hospitalized and tested several times, no one could tell her what was wrong.
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.
“That’s what’s so interesting about this whole thing. You don’t have hysteria in the beginning–you just feel sick. But the more you suffer and no one acknowledges what’s happening to you, the more you protest and the more hysterical you look.”
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.
She got help with background information from DePaul professor Leonard Jason, a psychologist who heads the university’s Center for Community Research. From 1995 to ’98 he led a study of the disease’s demographics underwritten by the National Institute of Allergy and Infectious Diseases.
Jason, who had a bout of CFS in the late 80s–and is lobbying to get the name changed–says he was skeptical of previous research, which seemed to show that the few people who had CFS were primarily white, middle-class women and attributed the ailment to depression or anxiety. “The reason I thought the number was so much larger is because the national self-help group has over 20,000 people in it,” says Jason. “The Centers for Disease Control were getting two to three thousand phone calls a month asking what to do about chronic fatigue. I sensed their numbers were very off, and when I looked at their methodology, I saw that they had a very biased way of conducting studies.”
His research team first conducted phone interviews with 18,000 random adults from white, Hispanic, and African-American neighborhoods in Chicago, asking whether respondents had suffered from unexplained, persistent fatigue for at least six months as well as multiple other CFS symptoms, such as impaired memory, painful glands, new or unusual headaches, and nonrestorative sleep. The 400 who had were given medical and psychological evaluations to rule out other conditions that can cause chronic fatigue, for example cancer or AIDS.
The team identified 32 people who fit the CFS profile, a number that, by a “complicated formula,” led Jason to believe that as many as 800,000 people in the general population may be affected. He says the findings discredit previous views about who gets the “yuppie flu”: Latinos were twice as likely to suffer from CFS as whites, and the rate among African-Americans was also higher than for whites. The group most likely to be afflicted was skilled female workers between the ages of 40 and 49.
“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.”
Although some people never recover, Snyder got better little by little as she continued making the film, which she finished last year. “I’d have a window in the day, like when you have had terrible flu or food poisoning, there’s that hour where you have a little bit more in you; then you have to lie down immediately,” she says. “As I got better, the window became bigger.”
I Remember Me will be shown Friday through Thursday at 6:15 and 8:15 (except Sunday, when screenings are at 4:15 and 6:15) at the Gene Siskel Film Center, 164 N. State (312-846-2800). Snyder will discuss her film and answer questions at the Wednesday and Thursday screenings. Admission is $8.
Art accompanying story in printed newspaper (not available in this archive): photo/Charles Eshelman.