Chronic fatigue syndrome clearly “is not a rare illness,” said the CDC’s Dr. Elizabeth Unger, co-author of a new report on the condition. An estimated 3.3 million adults in America have it.
NEW YORK (AP) — Health officials on Friday released the first nationally representative estimate of how many U.S. adults have chronic fatigue syndrome: 3.3 million.
The Centers for Disease Control and Prevention’s number is larger than previous studies have suggested, and is likely boosted by some of the patients with
The report relied on patients’ memories, without verifying their diagnoses through medical records.
That could lead to some overcounting, but experts believe only a fraction of the people with chronic fatigue syndrome are diagnosed, said Dr. Daniel Clauw, director of the University of Michigan’s Chronic Pain and Fatigue Research Center.
“It’s never, in the U.S., become a clinically popular diagnosis to give because there’s no drugs approved for it. There’s no treatment guidelines for it,” Clauw said
The tally likely includes some patients with long COVID who were suffering from prolonged exhaustion, CDC officials said.
Long COVID is broadly defined as chronic health problems weeks, months or years after an acute COVID-19 infection. Symptoms vary, but a subset of patients have the same problems seen in people with chronic fatigue syndrome.
“We think it’s the same illness,” Yellman said. But long COVID is more widely accepted by doctors, and is being diagnosed much more quickly, he said.
Powell, one of Yellman’s patients, was a high school athlete who came down with an illness during a trip to Belize before senior year. Doctors thought it was malaria, and she seemed to recover. But she developed a persistent exhaustion, had trouble sleeping and had recurrent vomiting. She gradually had to stop playing sports, and had trouble doing schoolwork, she said.
After five years, she was diagnosed with chronic fatigue and began to achieve some stability through regular infusions of fluids and medications. She graduated from the University of Utah and now works for an organization that helps domestic violence victims.
Getting care is still a struggle, she said.
“When I go to the ER or to another doctor’s visit, instead of saying I have chronic fatigue syndrome, I usually say I have long COVID,” Powell said. “And I am believed almost immediately.”
