Chronic fatigue syndrome, a serious long-term illness characterized by extreme tiredness, may be more common than previous research has suggested.
New data released by the Centers for Disease Control and Prevention (CDC) last week indicates that the condition, which is also called myalgic encephalomyelitis, affects about 3.3 million U.S. adults. The estimate is based on data from a national survey of over 50,000 Americans between 2021 and 2022. A previous study had put the number more in the range of 836,000 to 2.5 million.
“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, multisystem illness characterized by activity-limiting fatigue, worsening of symptoms after activity, and other symptoms,” wrote Elizabeth Unger, MD, chief of the CDC’s Chronic Viral Diseases Branch, and her coauthors. “It affects all age, sex, and racial and ethnic groups and costs the U.S. economy about $18 to $51 billion annually.”
The new research highlights that the likelihood of getting ME/CFS increases with age, with the highest percentage having it between ages 50 and 69. After that point, the risk declines.
The syndrome was most common among white adults (1.5 percent), but also affects non-Hispanic Black adults (1.2 percent), Hispanic people (0.8 percent) and Asian individuals (0.7 percent). For women, the risk was about twice as great compared with men.
Disease rates decreased with higher family income and as places of residence became more metropolitan and less rural.
The new findings illustrate that the illness can affect a range of people, and is not limited to middle and upper class white women, as some earlier reports seemed to suggest.
The CDC notes that about 90 percent of people with ME/CFS have not been diagnosed, “especially among people from racial and ethnic minority groups.”
In part, a rise in chronic fatigue syndrome cases may be due to the fact that it shares similar disabling symptoms with long COVID, including persistent fatigue, cognitive problems, headaches, and disrupted sleep. Research from earlier this year comparing the two illnesses highlighted that most symptoms are almost identical, although decreased smell and taste, rash, and hair loss are more likely in long COVID compared with CFS.
Difficult to Diagnose, Difficult to Treat
In many ways, chronic fatigue syndrome remains a mystery. The illness is often misunderstood and might not be taken seriously by some healthcare providers, according to the CDC. Most medical schools in America do not include ME/CFS as part of their physician training.
“Certainly a lot of patients have experienced dismissal or disregard, with some healthcare providers lumping it all into being psychological,” says Michael Zeineh, MD, an associate professor of radiology with Stanford Health Care in California, who has conducted research exploring brain structure differences in patients with chronic fatigue syndrome. “There’s a real syndrome going on here — we just don’t fully understand it.”
While there are no blood tests or scans to identify the disease, the CDC has taken steps to improve knowledge of the illness among healthcare professionals and the public.
What Are the Symptoms of Chronic Fatigue Syndrome?
According to the agency’s detailed diagnosis criteria, the symptoms of chronic fatigue syndrome can vary from person to person, and may include:
- Exhaustion lasting more than six months
- Unrefreshing sleep
- Muscle or joint pain
- Dizziness
- Cognitive impairment
- Worsening of symptoms after physical or mental activity
The cause of the condition remains unknown. Mayo Clinic says a combination of factors may be involved, including infections (from illnesses such as Lyme disease or infectious mononucleosis), physical or emotional trauma, and problems with how the body converts food into energy.
For individuals who have possible symptoms, Dr. Zeineh urges them to discuss their health with a personal physician, and to possibly rule out other diseases that could be causing the issues. “People have to make sure nothing else is causing their symptoms, such as sleep apnea or hypothyroidism,” he says.
The CDC says symptom improvement is possible with techniques like deep breathing and muscle relaxation, massage, and movement therapies such as stretching, yoga, and tai chi. These can reduce stress and anxiety, and promote a sense of well-being, according to the health agency.
Zeineh, however, stresses that there is no cure or established treatment. “Some people have tried anti-inflammatory medications and anti-psychotic medications, but there is not a therapy of choice,” he says. “Researchers like myself are working to better understand the disease and find interventions but there has not been a lot of success.”
