This Many U.S. Adults Have Chronic Fatigue Syndrome

— In survey, 1.3% report having an ME/CFS diagnosis

by
Judy George, Deputy Managing Editor, MedPage Today
December 8, 2023

During 2021-2022, 1.3% of adults had myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), new National Health Interview Survey (NHIS) data showed.

Women (1.7%) were more likely than men (0.9%) to have ME/CFS, according to Anjel Vahratian, PhD, MPH, of the CDC’s National Center for Health Statistics (NCHS), and co-authors.

The percentage of people with ME/CFS rose with age through ages 60-69, then dropped in those 70 and older, the researchers reported in NCHS Data Brief. White adults were more likely than Hispanic or Asian adults to have ME/CFS. ME/CFS estimates decreased with higher family income and increased with rural residence.

ME/CFS is a chronic multisystem illness characterized by activity-limiting fatigue. Its cause is unknown, but many people develop ME/CFS after an acute infection and have symptoms that persist for 6 or more months. There is no diagnostic test or FDA-approved treatment for the condition.

Post-exertional malaise is a hallmark of the disease; small amounts of activity can result in a prolonged exacerbation of symptoms and a reduction in function. Other symptoms may include sleep impairment, cognitive problems, pain, orthostatic intolerance, flu-like symptoms, sensory intolerance, gastrointestinal problems, or genitourinary issues.

Some ME/CFS symptoms may be seen in other syndromes like long COVID. “The overall clinical picture of many [post-acute infection syndromes] often overlaps with the presentation of post-infectious ME/CFS or fibromyalgia, or resembles other fatiguing, neurological, or rheumatic disorders,” noted Akiko Iwasaki, PhD, of Yale University in New Haven, Connecticut, and co-authors in a recent Nature Medicine review.

The NHIS estimates were based on household interviews with 57,133 adults (29,482 in 2021 and 27,651 in 2022) conducted either in person or by telephone. ME/CFS was determined by a “yes” response to two survey questions: whether respondents had ever been told by a doctor or other health professional that they had CFS or ME, and whether they still had CFS or ME.

The percentage of adults who said they had ME/CFS was 0.7% among respondents ages 18-39, climbed to 2.0% and 2.1% among those ages 50-59 and 60-69, respectively, then fell to 1.4% among people 70 and older.

White adults (1.5%) were more likely than Hispanic (0.8%) or Asian adults (0.7%) to have ME/CFS. Black adults (1.2%) were more likely than Asian adults to have ME/CFS, but the difference between Black and Hispanic adults was not statistically significant.

People with a family income below 100% of the federal poverty level had the highest percentage of ME/CFS at 2.0%, followed by those at 100% to 199% (1.7%), then those at 200% or more (1.1%).

As rurality increased, so did the percentage of ME/CFS. Estimates of ME/CFS were 1.0% and 1.1% in large central and large fringe metro areas, respectively, 1.5% in medium and small metropolitan areas, and 1.9% in non-metropolitan areas.

“As the prevalence estimates in this report are based on a doctor’s diagnosis, adults who are undiagnosed are not included in this analysis,” Vahratian and colleagues noted. “True prevalence estimates may be higher, as previous studies suggest that many people with ME/CFS are undiagnosed.”