We've all felt sleep-deprived, exhausted, or burnt-out, but there's a difference between feeling tired and feeling tired all the time without any respite. Anywhere between 836,000 to 2.5 million Americans suffer from a little known but debilitating medical condition called myalgic encephalomyelitis or chronic fatigue syndrome (CFS), according to the Centers for Disease Control (CDC).
"In patients with chronic fatigue syndrome, it's not that they don't want to do something, it's just that they're unable to," explains Raghav Govindarajan, MD, a neurologist with University of Missouri Health Care.
What is chronic fatigue syndrome?
"It's a disabling illness where people are not able to do their usual activities and many times people are confined to their beds," Dr. Govindarajan says.
With chronic fatigue syndrome, rest doesn't take away the fatigue and physical exertion can make the symptoms worse. People can suffer from chronic fatigue syndrome for months or years at a time - and about 90% go undiagnosed, according to the CDC. Currently there is no test that can identify CFS, so doctors have to rule out thyroid issues, anemia, vitamin deficiencies, sleep apnea, and other medical conditions first. Even then, sometimes CFS patients are dismissed as malingering.
"Too often, this disease is categorized as imaginary," said Ron Davis, PhD, a Stanford professor of biochemistry and of genetics in a news release. "Different tests would normally guide the doctor toward one illness or another, but for chronic fatigue syndrome patients, the results all come back normal."
He's attempting to change that by developing a blood-based diagnostic test that could identify chronic fatigue syndrome by looking at how a person’s immune cells respond to stress. Davis, whose adult son has suffered from CFS for about a decade, recently published a paper on his findings in the Proceedings of the National Academy of Sciences. Out of the 40 people in the trial, the test correctly identified the 20 participants with CFS and the 20 control subjects without. Finding this biomarker could also help develop treatments down the line, but the technology is still in its early stages.
What are the common signs?
Chronic fatigue syndrome is characterized by severe, overwhelming fatigue that is unimproved by sleep or rest. People with CFS also experience what's called post-exertional malaise (PEM), when symptoms get worse after physical, mental, or emotional exertion, according to the CDC. Other symptoms associated with CFS include:
- Dizziness and lightheadedness
- Blurry vision
- Poor sleep
- Inability to concentrate
The symptoms are typically the worst in the first two years, Dr. Govindarajan says. Less than one-third of patients completely recover in this time, and less than one-third will have symptoms that get worse.
What causes it?
Researchers haven't identified an exact cause for CFS, but there's often a inciting event like an infection or flu-like illness, or a significant event like an accident or the death of a loved one, Dr. Govindarajan says. It's still unclear if this is an association or a causation, but the theory is that this stressful event may trigger a change in a person's brain and immune system, similar to that of an autoimmune disease.
How is it treated?
There is no cure for chronic fatigue syndrome, but doctors can treat the symptoms with medications, carefully designed exercise plans, cognitive behavioral therapy, and other strategies. Exercise may sound like a counterintuitive way to treat CFS, but walking, cycling, and water aerobics have helped Dr. Govindarajan's patients in the past when done under the supervision of a therapist.
"When you do aerobic exercises, it's supposed to release endorphins and other chemicals that improve your overall well-being, including your energy levels," he says. "We're trying to harness the body's own wellness system to fight this disease."
Counseling like CBT can help with co-existing psychiatric symptoms and pain. "The idea is to minimize the amount of medications," says Dr. Govindarajan. "We have pills for everything ... But pills are not the end of it all."
If you think you or someone you know may suffer from chronic fatigue syndrome, your best bet is to find a healthcare provider familiar with the disease, like a primary care doctor, neurologist, or rheumatologist.
While there's still lots left to learn about CFS, progress is being made. "There is a greater awareness," Dr. Govindarajan says. "More and more patients are coming forward and more and more diagnoses are happening."
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