The U.S. Centers for Disease Control and Prevention (CDC) released startling new data this week showing that chronic fatigue syndrome, a complex and often misunderstood illness, affects at least 3.3 million American adults. This figure indicates the condition is far more prevalent than past estimates suggested.
Key Survey Findings
The CDC report stems from a 2021-2022 national health survey of over 54,000 adults. Key findings include:
- An estimated 3.3 million U.S. adults (1.3% of the population) have chronic fatigue syndrome
- Illness rates were 2 to 3 times higher among women compared to men
- Prevalence was also higher among Hispanics and those with lower incomes
- Over 75% of cases were undiagnosed or misdiagnosed with other conditions
Chronic Fatigue Syndrome Explained
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a complex, debilitating medical condition characterized by extreme and persistent fatigue that is not alleviated by rest. Other common symptoms include:
- Post-exertional malaise
- Cognitive dysfunction (“brain fog”)
- Unrefreshing sleep
- Joint and muscle pain
- Headaches
- Sore throat
- Tender lymph nodes
While the exact cause remains unknown, research points to abnormalities in the immune system, autonomic nervous system, energy metabolism, hormones, and gut microbes. There are currently no FDA-approved treatments or cures for CFS.
Underdiagnosis Has Led to Stigma
Advocacy groups have stressed that the underdiagnosis and lack of medical recognition of this illness has contributed greatly to the stigma and disbelief that patients frequently encounter.
“This new CDC data confirms what patients have said all along – that ME/CFS devastates millions of lives,” said Dr. Lucinda Bateman, founder of the Bateman Horne Center.
Other ME/CFS experts also found the 3.3 million figure unsurprising.
“As a clinician specializing in ME/CFS for 25 years, these numbers confirm what I have seen in practice,” said Dr. Nancy Klimas, director of the Institute for Neuro-Immune Medicine. “This shows the scope of the problem and should erase all doubts regarding the serious need for more research and education.”
What’s Causing the Increased Prevalence?
It remains unclear what factors are driving the higher-than-expected rates of chronic fatigue syndrome.
Some researchers believe CFS has always been this common but that it is only now finally being recognized at its true prevalence through surveys like this one.
However, others speculate that CFS could be increasing and emerging from other conditions like long COVID-19. Studies indicate approximately 30% of long COVID patients develop ME/CFS-like illness.
The CDC survey notably did not ask respondents about COVID-19 status or timing of onset in relation to the pandemic.
Long Road to Recognition
The CDC study represents a major step forward in legitimizing ME/CFS after decades of neglect from the medical establishment.
CFS was historically dismissed as purely psychological rather than biological despite mounting evidence to the contrary. Many patients report feeling gaslighted and stigmatized during their difficult diagnostic journeys.
| Year | Key Milestones in ME/CFS History |
|---|---|
| 1984 | Mystery outbreaks of persistent “chronic fatigue” start, but with no known cause, they are labeled psychosomatic |
| 1988 | Dr. Gary Holmes coins the name “chronic fatigue syndrome” |
| 2015 | Institute of Medicine proposes new diagnostic criteria and the name “systemic exertion intolerance disease” |
| 2016 | CDC drops recommendation of psychotherapy and graded exercise therapy after patient objections |
| 2022 | Long COVID leads to renewed interest and research into post-viral ME/CFS |
| 2023 | CDC survey provides first nationwide estimate confirming millions affected |
While the survey begins to quantify the true burden of ME/CFS, advocates stress much more remains to be done to support patients and move toward treatment options.
What Comes Next?
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More research funding: Federal funding for ME/CFS research remains extremely low despite its prevalence. Groups are calling for a major boost in spending.
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Updated clinical guidelines: Clearer diagnostic and treatment protocols for doctors based on modern scientific findings.
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Drug development: With no FDA-approved medications yet available, the push is on to investigate new therapies, drawing lessons from long COVID and other post-infectious illnesses.
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Disability support: Making Social Security disability benefits and workplace/school accommodations more accessible for this predominantly home/bed-bound patient population.
While last week’s survey provides long-awaited vindication, patients emphasize the real measure of progress will be tangible improvements in medical care and compassion for the over 3 million disabled Americans now known to have chronic fatigue syndrome.
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