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Chronic fatigue syndrome has been gaining scientific credibility, and 14 research papers just published may convince doubters that the syndrome is a true medical problem. The papers describe specific genetic and biologic changes in people with debilitating fatigue, as NPR's Joanne Silberner reports.
JOANNE SILBERNER reporting:
Kathy Rabin of Arlington, Massachusetts remembers exactly when she first got sick: June 11, 1990.
Ms. KATHY RABIN (Arlington, Massachusetts): I came down with the flu and I got in bed and thought I'd be better in a couple of days and I wasn't.
SILBERNER: The Harvard-trained lawyer was so fatigued she could barely work at her job at Massachusetts General Hospital in Boston. She bounced from doctor to doctor until she finally found one who would make a diagnosis.
Ms. RABIN: My doctor at Mass General was like, I'm not sure I believe in this, but I can't figure out what else you have, so it must this.
SILBERNER: A lot of people have had a hard time believing in chronic fatigue syndrome, says Suzanne Vernon from the Centers for Disease Control and Prevention.
Dr. SUZANNE VERNON (Centers for Disease Control and Prevention): We have actually been struggling with what is wrong with people that have chronic fatigue syndrome, because I think we've taken a very conventional approach at studying it, looking at, you know, maybe one molecule or one hormone or one type of cell at a time.
SILBERNER: Vernon is one of the researchers who decided to work with the whole picture using data collected by the CDC on 227 people with chronic fatigue syndrome. Those people volunteered to stay in the hospital for two days and be thoroughly examined, electrodes on their heads as they slept, blood tests, psychological tests, genetic tests. She says it was incredibly comprehensive.
Dr. VERNON: So if we're not going to able to figure out what's wrong with you after those two days, something is wrong with us. We better find a new job.
SILBERNER: The CDC gave the data to four groups of researchers who now publish 14 research articles in the Journal of Pharmacogenomics. In a teleconference yesterday, William Reeves of the CDC describes what the researchers discovered about people with chronic fatigue syndrome, or CFS.
Dr. WILLIAM REEVES (Centers for Disease Control): For the first time ever we have documented that people with CFS have certain genes that are related to those parts of brain activity that mediate the stress response.
SILBERNER: And people who have CFS symptoms displayed certain gene activation fingerprints. Some researchers thought looking for such complex genetic patterns was a fool's errand, says Anthony Komaroff. Komaroff is professor of medicine at Harvard and an early believer in chronic fatigue syndrome. He says the science backs up earlier work showing a genetic connection and it could lead to more.
Dr. ANTHONY KOMAROFF (Professor of Medicine, Harvard University): I'll bet that within five to seven years such gene activation fingerprints are going to help us diagnose the illness and will probably also reveal that the illness has several different subtypes that respond to different treatments, and that's why you want to get the fingerprint.
FILBERNER: And chronic fatigue patient Kathy Rabin says however long it takes, the recognition that chronic fatigue syndrome is real will make her life easier now.
Ms. RABIN: I'm always so thrilled when there's any research that goes forward and when there's anything in the press that says it's a real illness. Some people are still sort of surprised; you know, you've got a real illness. I'm like, that's what I've been telling you for 15 years.
SILBERNER: One more benefit of the research, the head of the CDC says this approach of gathering a huge amount of data and having lots of people work with it could be helpful for other complex diseases such as autism.
Joanne Silberner, NPR News,
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