Myalgic encephalomyelitis, aka chronic fatigue syndrome (ME/CFS), is a serious illness characterized by severe exhaustion that does not improve with rest or sleep.
ME/CFS 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 ME/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 ME/CFS and how to know if you might have the condition.
Symptoms
Many people with ME/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 Health Center at MemorialCare Orange Coast Medical Center.
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
Orthostatic intolerance, which can cause dizziness, weakness, or fainting while standing or sitting up
Symptoms that become worse after physical or mental activity
Diagnosis
Research suggests that up to 2.5 million Americans may have ME/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 ME/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 ME/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."
Causes
Because ME/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.
ME/CFS is diagnosed most in white individuals and four times more often in women than men. Many people diagnosed with ME/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 ME/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.
Managing symptoms
There is no cure for ME/CFS, but some people manage their symptoms through lifestyle changes, medications, and research-backed protocols.
Be prepared: Treating ME/CFS often involves trial and error. Doctors typically treat the symptoms causing the biggest disruption in a person's life
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 ME/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.
