The U.S. Centers for Disease Control and Prevention (CDC) released new survey results this week indicating that more than 3 million adults in America have chronic fatigue syndrome (CFS). The findings suggest CFS is more widespread than previously thought, bringing renewed attention to this complex, difficult-to-diagnose condition.
CDC Survey Methodology and Key Findings
The CDC survey, conducted in 2021, used randomized phone interviews and online panels to estimate CFS prevalence among adults 18 and over in the United States.
Key findings include:
- An estimated 3.28 million adults (1.34% of adults) have CFS
- Nearly 80% of people with CFS have not received an official diagnosis, meaning the total number affected could be even higher
- Women are 2-3 times more likely to have CFS than men
- Prevalence is highest among people 40-59 years old
- 45% of people with CFS are unemployed or disabled, underscoring the condition’s impacts
What is Chronic Fatigue Syndrome?
Chronic fatigue syndrome is a complex, difficult-to-diagnose medical condition characterized by extreme, persistent fatigue that is not relieved by rest and worsens with physical or mental activity. The fatigue significantly interferes with normal activities and quality of life.
CFS also causes a variety of other symptoms like muscle pain, impaired memory and concentration, insomnia, dizziness, and more. Symptom severity can fluctuate unpredictably over time.
| Common Symptoms of Chronic Fatigue Syndrome |
|---|
| Extreme, persistent fatigue |
| Sleep problems and unrefreshing sleep |
| Muscle pain |
| Headache |
| Sore throat |
| Impaired memory and concentration |
| Dizziness upon standing |
The cause of CFS is unknown, as is the case with many chronic pain disorders. There are no laboratory tests to diagnose CFS – it is primarily identified based on clinical evaluation and exclusion of other fatiguing conditions.
Misconceptions about CFS being psychosomatic have caused many patients distress. The condition is very real and symptoms are not just “in people’s heads.”
Impacts and Daily Life With CFS
Living with CFS can be tremendously difficult given the extreme fatigue and array of symptoms that are always present to some degree.
Basic activities like showering, preparing meals, or reading can wipe out energy reserves for the entire day. Taking care of responsibilities at home and work is hugely impacted. Social life also suffers from lack of energy.
The disability and unemployment rates from the CDC survey demonstrate how severely CFS hinders normal function for many patients. Bedbound individuals are not uncommon in the CFS population either.
“On bad days, even rolling over in bed can be almost impossible,” explains Hannah Davis, 32, diagnosed with CFS five years ago. “I desperately miss being able to go out with friends or go shopping without carefully considering if I’ll have the energy.”
CDC Aims to Boost Recognition, Research into CFS
The CDC indicates a goal of the new survey findings is to bring awareness to the reality of CFS as a disabling condition affecting millions.
“This study helps demonstrate that CFS is a real and serious neurologic disease,” said Dr. Elizabeth Unger of the CDC.
By providing better prevalence estimates, the agency also aims to spur further research into the risk factors and biological mechanisms of CFS in hopes of improving diagnosis and treatment.
What’s Next for the CFS Community
Patient advocates and organizations like #MEAction have applauded the CDC study as validating the scale of the illness.
“After years of neglect, we’re now seeing real momentum,” said #MEAction Vice President Ben HsuBorger. “But we still have a long way to go to find treatments and a cure.”
Going forward, the CFS community will continue pushing the CDC and National Institutes of Health (NIH) to ramp up research funding and efforts specifically looking into the root causes and disease progression of CFS (also called myalgic encephalomyelitis or ME).
Groups also plan to use the new prevalence data to lobby for expanded medical education and clinical resources related to accurately diagnosing and managing CFS. Additionally, more awareness-raising within the broader public health sector is needed so CFS is not dismissed or mischaracterized as purely psychological.
Through increased understanding of this debilitating illness that now affects over 3 million American adults, patients and advocates hope better care and support will follow.
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