Dec. 8, 2023 – More people than previously thought may have chronic fatigue syndrome, according to a new federal report.
The condition’s distinctive symptom is extreme exhaustion, but can include a range of others like dizziness and joint pain, all of which can flare after activity. About 1 in 100 U.S. adults surveyed indicated they had chronic fatigue syndrome (also known as myalgic encephalomyelitis), according to data gathered in 2021 and 2022 as part of the CDC’s National Health Interview Survey. The report was based on 57,133 survey responses.
Survey data can sometimes result in an overcount because a person’s diagnosis was not confirmed using medical records. But this latest CDC report on chronic fatigue syndrome was not met with skepticism by some experts, who believe the condition has been widely underdiagnosed.
“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,” Daniel Clauw, MD, director of the University of Michigan’s Chronic Pain and Fatigue Research Center, told The Associated Press.
The new report also challenged some other widely held beliefs about chronic fatigue syndrome, such as that it is mainly a condition that affects wealthy, white women. Instead, survey data showed the condition doesn’t have a wide margin in terms of gender difference, with 0.9% of men and 1.7% of women reporting they are affected by it. People with lower incomes were also more likely to report having chronic fatigue syndrome.
There was no significant difference between the rate of chronic fatigue syndrome among white people and Black people, the survey showed, although white people were more likely to be affected by it compared to Asian people and Hispanic people. Black people were more likely to have chronic fatigue syndrome, compared to Asian people.
The disconnect between past metrics and this latest data may reflect systemic problems in the U.S. health care landscape, including unequal access and discrimination.
People who are diagnosed and treated for chronic fatigue syndrome “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,” Brayden Yellman, MD, a specialist at the Bateman Horne Center in Salt Lake City, Utah, told the AP.
When researchers analyzed data by age, they found that chronic fatigue syndrome is more likely to affect people as they get older. But then the rate of the condition drops off among people age 70 and older.
CDC officials told the AP that people who have long COVID, which shares some symptoms with chronic fatigue syndrome, may be some of the people newly counting themselves in this latest survey. The new estimates of 1.3% of U.S. adults having chronic fatigue syndrome means that it may affect as many as 3.3 million people.
Chronic fatigue syndrome clearly “is not a rare illness,” report author Elizabeth Unger, MD, PhD, of the CDC, told the AP.