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The Centers for Disease Control and Prevention (CDC) released the results of a survey in which Americans report receiving a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
According to the survey, over 1.3% of Americans say their doctor told them they have chronic fatigue syndrome. Based on the current U.S. population of 333 million, 1.3% of that figure equals about 4.3 million Americans.
The CDC’s previous estimate for Americans with CFS/ME was 836,000 to 2.5 million people.
The CDC also reports that about 90% of people with the condition have not been diagnosed.
According to the agency, CFS/ME costs the United States economy approximately $17 to $24 billion annually in medical bills and lost income.
CFS and ME are two different terms for the same condition. “ME” gained popularity among physicians in the United Kingdom, while “CFS” was first used in the U.S. “CFS/ME” is the current term applied to chronic fatigue syndrome in the U.S.
The survey questioned 57,133 American adults in 2021–2022. People in the survey were asked if they had received a definitive diagnosis of CFS/ME or if they recalled having been told they had the condition by their physicians.
CFS/ME is generally described as being characterized by at least six months of profound tiredness.
The rise in CFS/ME cases may be partially attributed to long COVID, a general term for the lingering effects of an acute COVID-19 infection.
A 2023 review found that CFS/ME and long COVID-triggered chronic fatigue are similar, though some differences exist. One international survey found that 86.7% of respondents who had not recovered from long COVID reported chronic fatigue.
Dr. David Cutler, a family medicine physician at Providence Saint John’s Health Center in Santa Monica, CA, described the precise parameters of CFS/ME as somewhat vague. Dr. Cutler wasn’t involved in the survey.
“While the existence of chronic fatigue syndrome, or what is more accurately termed chronic fatigue syndrome/myalgic encephalomyelitis, is clear,” he said, “the actual definition of this condition is a little more confusing.”
Dr. Cutler added there are “multiple definitions” for chronic fatigue syndrome.
“This variation in definition is quite common when a medical condition is a ‘syndrome’ and not a disease. Diseases have a known, identifiable, generally recognized cause. Syndromes may have multiple, unknown, and/or poorly defined causes. This uncertainty about diagnosis leads many to believe the condition is under-diagnosed, while others may feel it is over-diagnosed.”
— Dr. David Cutler, family medicine physician
The CDC survey included the following key findings:
“Chronic fatigue syndrome is everywhere,” Dr. Cutler said.
“While it is interesting to try to interpret the demographic trends, it is more striking to note that this poorly understood condition is reported in 1%–2% of the population regardless of age, race, sex, income, or location.”
Respondents of the survey were asked two questions:
Such self-reporting and reliance on respondents’ memories concern Prof. Andrew Lloyd of UNSW Sydney in Australia, who was not involved in the survey.
“This may have limited relationship to having an actual diagnosis of ME/CFS after careful consideration of the symptoms and disability, and a thorough history, examination and investigation of alternative causes,” Prof. Lloyd told MNT.
Prof. Lloyd said the CDC’s data is better understood as “a survey of the complaint of chronic fatigue and popular diagnoses that are applied to those with that complaint.”
He noted that one of the survey’s findings — the largest number of people reporting CFS/ME were 60 to 69 years old — “is very, very surprising.”
The CDC has reported elsewhere that MFS/ME is most common in people between 40 and 60 years of age.
“Treatment for CFS/ME focuses on managing symptoms and improving the individual’s quality of life,” Dr. Cutler said.
“This typically involves a multidisciplinary approach that may include a combination of medication to alleviate specific symptoms, lifestyle changes, such as pacing activities and managing energy levels, and psychological support, such as cognitive behavioral therapy or counseling,” he explained.
As for treating long COVID, Prof. Lloyd noted: “All of the available data suggests that those with long COVID featuring fatigue, like other post-viral fatigue syndromes, generally has a natural history of slow recovery over months.”
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