Chronic fatigue syndrome strikes more Americans than many might think: In a first national estimate, new government data puts that number at 3.3 million.
The condition clearly “is not a rare illness,” and is being fueled in part by patients who now suffer from long COVID, report author Dr. Elizabeth Unger, chief of the chronic viral diseases branch at the U.S. Centers of Disease Control and Prevention, told the Associated Press.
In reality, that count could be even higher, because experts believe only a fraction of the people with chronic fatigue syndrome are ever 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,” he told the AP. “There’s no treatment guidelines for it.”
Further clouding the picture, the tally likely included some patients with long COVID who were suffering from prolonged exhaustion, CDC officials said.
Long COVID is defined as chronic health problems that persist for weeks, months or years after a COVID infection. Symptoms can vary, but patients often complain of the same symptoms seen in people with chronic fatigue syndrome.
“We think it’s the same illness,” Dr. Brayden Yellman, a specialist at the Bateman Horne Center in Salt Lake City, told the AP. But long COVID is more accepted by doctors and is diagnosed much more quickly, he added.
Meanwhile, chronic fatigue syndrome typically involves at least six months of severe exhaustion not helped by rest. Patients also report pain, brain fog and other symptoms that can get worse after exercise, work or other activity. There is no no test or scan that can diagnose the condition definitively, and there is no cure.
Research suggests it is the body’s prolonged overreaction to an infection or other jolt to the immune system.
The new survey, published Dec. 8 as a NCHS Data Brief, is based on a survey of 57,000 U.S. adults in 2021 and 2022. All were asked if a doctor or other healthcare professional had ever told them they had chronic fatigue syndrome, known medically as myalgic encephalomyelitis, and whether they still have it. About 1.3% said yes to both questions.
That translated to about 3.3 million U.S. adults, CDC officials said.
Women and white people were more likely to have the condition than men and other racial and ethnic groups.
Still, the findings also challenged perceptions that chronic fatigue syndrome is a rich white woman’s disease.
There was less of a gap between women and men than previous research has suggested, and there was little difference between white and Black people. The survey also found that a higher percentage of poor people said they had it than affluent people did.
Those longstanding misperceptions may come down to the fact that patients who are diagnosed and treated “traditionally tend to have a little more access to health care, and maybe are a little more believed when they say they’re fatigued and continue to be fatigued and can’t go to work,” said Yellman.
One limitation of the findings: The report relied on patients’ memories, without verifying their diagnoses through medical records.
Visit the U.S. Centers for Disease Control and Prevention for more on chronic fatigue syndrome.
SOURCE: NCHS Data Brief, Dec. 8, 2023; Associated Press
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