- Chronic fatigue syndrome (CFS) isn't well understood and therefore difficult to diagnose.
- About a quarter of people with CFS cannot leave their homes due to severe pain and fatigue.
Chronic fatigue syndrome (CFS) is a serious illness characterized by severe exhaustion that does not improve with rest or sleep.
The disease, also known as myalgic encephalomyelitis (ME), is not well understood, but doctors believe that it involves both the neurological and immune systems, and is often triggered by a seemingly unrelated bacterial or viral infection making it difficult to diagnose.
There are currently no FDA-approved treatments for CFS but there are some protocols that can improve quality of life, says Emily Taylor, vice-president of advocacy and engagement at Solve ME/CFS.
Continue reading to learn more about CFS and how to know if you might have the condition.
Symptoms
Many people with CFS aren't able to accomplish daily activities like working or cooking because of their intense fatigue and about 25% are housebound. This results in low quality of life.
In addition, people with CFS experience symptoms beyond just tiredness, says Medhat Mikhael, MD, pain management specialist and medical director of the non-operative program at the Spine
The following symptoms may come and go, or get worse with time:
- Severe fatigue, even when you get enough sleep
- Sleep problems, including insomnia, no matter how tired you are
- Brain fog and trouble concentrating or thinking
- Pain, including headaches and joint pain throughout the body
- Dizziness
- Symptoms that become worse after physical or mental activity
Diagnosis
Research suggests that up to 2.5 million Americans may have CFS, but that less than 10% of people with CFS have been diagnosed.
That's at least in part because there is no test for CFS, and these symptoms can be confused with other autoimmune and nervous system conditions, or for mental illness, including:
- Fibromyalgia
- Dysautonomia
- Endometriosis
- Arthritis
- Depression
- Anxiety
Moreover, doctors are often unfamiliar with CFS, making it difficult for patients to get a diagnosis, says Jacob Teitelbaum, MD, an internist with Vitality101.
"CFS is no more a mental illness than cancer is," he says. "Unfortunately, some physicians over the last century have had the habit of implying to people that 'I don't know what's wrong with you so you are crazy.'"
Teitelbaum adds that this can, "delay treatment and cause deep anguish."
Note: Solve ME/CFS has an online quiz that can help you determine if you may have the condition.
Causes
Because CFS is under-diagnosed, it's difficult to know who is affected the most. Some research indicates the condition is most common in ages 40-60, while other research shows it is more common in ages 20-40.
CFS is diagnosed most in white individuals and four times more often in women than men. Many people diagnosed with CFS have had a recent infection, and infections are being explored as a possible cause. Another risk factor is childhood trauma.
While no definitive cause or mechanism of CFS is understood, Teitelbaum says that research indicates people with the condition may have "tripped a circuit breaker" — so to speak — in the hypothalamus. That area of the brain that produces hormones that control vital body functions ranging from heart rate and hunger to sex drive and sleep.
Note: People with long-haul COVID may develop symptoms similar to CFS and up to 46% meet the criteria for it. Researchers are still working to understand the connection.
Managing symptoms
There is no cure for CFS, but some people manage their symptoms through lifestyle changes, medications, and research-backed protocols.
Be prepared: Treating CFS often involves trial and error. Doctors typically treat the symptoms causing the biggest disruption in a person's life, including:
Post-exertional malaise
Post-exertional malaise (PEM) occurs when symptoms worsen with even minor physical or mental exertion.
To combat PEM, doctors recommend pacing, an approach where a person carefully paces their exertion throughout the day in order to control symptoms.
You can do this with the help of your doctor who can help you track patterns between certain exertions and symptoms. While the approach is imperfect day-to-day, it helps many people long term, says Taylor.
Sleep issues
Sleeping difficulties are common with CFS. The first step to treating either trouble falling asleep or staying asleep is to establish good sleep hygiene, with practices like going to bed at the same time every day and avoiding screens before and in bed.
Treatments for insomnia, including cognitive behavioral therapy, short-term sleep medications, and mindfulness can also help. Addressing other symptoms, like pain, can help people fall asleep and stay asleep.
Pain
People with CFS often experience widespread and generalized pain throughout their bodies, especially in their joints.
Doctors work with people with CFS to manage achiness and pain with light exercise like yoga or stretching and complementary medicine like acupuncture or massage. Over-the-counter pain medications including aspirin or ibuprofen can help too.
If the pain persists, your doctor may recommend working with a pain management specialist, who can help develop a pain management plan using lifestyle changes, behavioral therapy, and possible prescriptions.
Stress, anxiety and mental health
People with CFS are more likely than the general population to have mood disorders, including anxiety and depression.
Researchers are still investigating whether there is a biological mechanism at play, or whether the day-to-day challenges of living with CFS and being unable to do normal activities lead to the increased risk for depression.
Treatment for mental health conditions related to CFS includes mindfulness and relaxation therapies, as well as medication to treat depression or anxiety.
Overall well-being
People with CFS particularly benefit from a healthy lifestyle, including a balanced diet and mental health care.
Teitelbaum recommends the SHINE protocol, which he developed to treat people with CFS and fibromyalgia. It's a comprehensive set of lifestyle adjustments and medical interventions that addresses:
- Sleep: The protocol recommends getting 8-9 hours of sleep and using insomnia treatments, if necessary, to achieve that.
- Hormones: The protocol aims to stabilize hormone levels through medications that target the thyroid and adrenal glands.
- Infections: The protocol identifies, addresses and prevents infections, ranging from yeast infections to viral illnesses.
- Nutrition: The protocol calls for a well-balanced eating plan to address any nutritional deficiencies.
- Exercise: After 10 weeks of following the program, patients are told to increase their exercise slowly and with doctor supervision.
Note: A small 2011 study, which Teitelbaum oversaw, found that people with CFS and fibromyalgia experienced better outcomes after following the protocol. The results had lasted when researchers followed up nearly two years later.
Insider's takeaway
Chronic fatigue syndrome is a condition that causes extreme exhaustion, mental fog, as well as generalized pain throughout the body.
Up to 90% of cases are undiagnosed, and researchers are working to better understand the condition.
If you believe that you may have CFS, or you have been recently diagnosed, finding a doctor who is familiar with CFS can improve your outcome, says Teitelbaum.
"It is a complex illness and takes a physician who is knowledgeable in the condition," he says.