With No Known Cause Or Cure, Here's What We Know About Chronic Fatigue Syndrome

Content Warning: Brief Mention of Suicide

No one knows the cause of this ailment. Currently, no lab results can conclusively test for it. There is no approved treatment — let alone any kind of cure — for this health problem.

Some doctors actually refuse to believe that the condition exists. But those doctors are wrong. In fact, research from the Centers for Disease Control and Prevention (CDC) currently estimates that more than 3 million Americans suffer from the problem.

As medical mysteries go, it’s hard to find a more puzzling condition than chronic fatigue syndrome. Researchers continue to strive to discover its causes and effective treatments. Here’s what the science says about the illness.

While descriptions of people mysteriously suffering from prolonged fatigue have existed in medical literature for centuries, the condition we now identify as chronic fatigue syndrome was first defined in 1988, although that definition was, and in many ways still is, far from definitive. Over time, the ailment has come to be known by an additional name: myalgic encephalomyelitis (ME). These days, it’s often referred to by its joint acronym, ME/CFS.

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According to the CDC, ME/CFS is a complex illness, which is the sort of thing that medical experts say when they struggle to explain a syndrome that has no identifiable cause, treatment, or cure. That diagnostic and therapeutic uncertainty makes ME/CFS problematic for those doctors to treat effectively — and certainly a trial for the millions whose daily lives are impacted by it.

Unsurprisingly, one of the key symptoms of ME/CFS is extreme fatigue, no matter how much rest you get. This is especially true after a ME/CFS sufferer engages in any kind of significant physical or sometimes even mental activity. Thereafter, victims of this syndrome often experience an energy crash, or what is clinically known as post-exertional malaise (PEM), and a general worsening of fatigue symptoms.

Other symptoms can also include cognitive fatigue (or “brain fog,”) flulike symptoms, dizziness, depression, muscle aches and pain, sleep problems (especially engaging in sleep without feeling refreshed), and the general inability to perform even the most basic daily tasks, such as bathing or meal preparation. These acute symptoms can leave sufferers confined to their homes and often unable to get out of bed, causing significant physical, mental, personal, and financial misery.

Because there is no diagnostic test to empirically identify ME/CFS in a patient, the best that medical experts can do is to first rule out other diseases or conditions that could be causing the symptoms. This often involves a battery of tests and gathering extensive personal and medical histories from patients.

From there, doctors make a diagnosis based on the type and duration of symptoms that one suffers. Generally speaking, anyone who reports the following symptoms is a likely candidate for a CFS diagnosis:

• Severe fatigue (in the absence of any other obvious causes) for longer than six months

• PEM, either physically, mentally, or both

• Significant periods of sleep or rest without feeling remotely refreshed

• Difficulty with mental functions, especially memory or mental concentration

• Significant muscle or joint pain

Because of the confusing array of symptoms, and the fact that sufferers can deal with some symptoms for months or years without realizing that they even have ME/CFS, it can be difficult to determine exactly when someone first develops the illness. The disease can be maddeningly cyclical, too, with sufferers going through acute phases of fatigue or other symptoms, then feeling well (although many ME/CFS sufferers report that they never quite feel as well or as energetic as they did before the onset of the disease).

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In some cases, phases of extreme fatigue can last for six months to a year. And episodes of ME/CFS can be triggered or made worse by other factors, such as an infection or a life situation that causes significant physical or emotional stress. There may also be genetic factors that make some people more susceptible to the condition.

Various estimates suggest that very few people ever completely recover from ME/CFS — perhaps 5 to 10 percent of cases. However, those afflicted with ME/CFS can show some improvement in symptoms over time or as they become more adept at managing potential triggers and coping with the cyclical phases of the illness.

While the syndrome itself is generally not considered fatal, only a few studies have examined the mortality rate of people who suffer from ME/CFS. The condition has contributed to suicide, and it’s difficult to say conclusively whether the illness can increase the risk of death from other conditions. More research is needed.

A variety of doctors and specialists can address aspects of the disease. Generally, a primary care provider would be the first consultation for anyone who feels they may have ME/CFS. After they’ve performed an exam and tests to rule out other causes, a general healthcare provider would likely refer you to a specialist — typically a rheumatologist. Neurologists, experts in sleep studies, or other specialists may be called in to consult, depending on the symptoms.

Read More: Mental Fatigue Has Psychological Triggers

Again, there is no specific treatment or regimen currently known to eliminate ME/CFS. Instead, doctors focus on treating the various symptoms. As such, treatment can range from pain management, physical therapy, and light exercise to antidepressants, steroids, and anti-anxiety medications, among many others. Counseling or behavioral therapy can also help sufferers not only to deal with some symptoms but also to manage the cycles of the disease, as well as the waxing and waning of energy levels.

Any sufferer and many doctors will tell you that the symptoms of ME/CFS are all too real. Nevertheless, some doctors continue to question whether the condition itself is legit. Usually, these naysayers assert that symptoms are likely caused by other conditions (or a combination of them); or they may believe that the symptoms of ME/CFS are more psychological than physiological. However, while there may not yet be a definitive diagnostic test for it, researchers have found biomarkers, distinct immune changes in blood samples, that demonstrate that ME/CFS is indeed a biological condition, not a psychosomatic one. 

Still, ME/CFS remains a challenging syndrome to manage and treat, and all too many aspects of the condition continue to generate debate in the medical community. Even doctors who acknowledge the existence of the syndrome can’t always agree on what to call it: Instead of ME/CFS, it’s been argued that a more accurate name should be Systemic Exertional Intolerance Disease (SEID).

By any other name, however, chronic fatigue syndrome is absolutely a real disease and has been acknowledged as such by both the CDC and the World Health Organization.

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Our writers at Discovermagazine.com use peer-reviewed studies and high-quality sources for our articles, and our editors review for scientific accuracy and editorial standards. Review the sources used below for this article:

• CDC: National Center for Health Statistics: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021-2022.

• CDC: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Symptoms and Diagnosis.

• Fatigue, July 2015: Chronic Fatigue Syndrome versus Systemic Exertion Intolerance Disease.

• Frontiers in Psychology, December 2023: Post-exertional malaise in daily life and experimental exercise models in patients with myalgic encephalomyelitis/chronic fatigue syndrome.

• Healthcare, June 2021: Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

• Journal of Clinical Medicine, October 2021: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): An Overview.

• The Lancet, Vol. 387, Issue 10028, April 16, 2016: Mortality of people with chronic fatigue syndrome.

• National Library of Medicine: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.

• Science Advances, Vol. 1, No. 1, February 6, 2015: Distinct Plasma Immune Signatures in ME/CFS are present early in the course of illness.