Chronic fatigue syndrome is a condition characterized by exhaustion — not mere tiredness, or ennui, but deep, bone-crushing fatigue that “no amount of sleeping can help.”

The condition — also known as myalgic encephalomyelitis, myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS — affects women anywhere from twice to four times as often as men, typically between the ages of 25 to 45 years; though it can affect adolescents and children as well.

According to the Center for Disease Control (CDC) in the U.S., an estimated 836,000 to 2.5 million Americans suffer from CFS, but most of them are undiagnosed. Also, research suggests that the U.S. loses between US$9 to 25 billion each year in reduced productivity and medical expenses due to CFS..

But data from India is sparse. Diagnosis of CFS is difficult, very little research has been done on the subject here, and general awareness is low. “Although there are no clear statistics available in India, I see a lot of people affected with the chronic fatigue syndrome, being tired all the time. But hardly anyone even considers doing something about the ‘tiredness,’” Dr. Navneet Kaur, senior consultant, internal medicine, Nova Specialty Hospitals, New Delhi, told LiveMint in 2015.

What is chronic fatigue syndrome?

CFS — as the name suggests — is a disorder characterized by extreme fatigue that lasts for at least six months and gets in the way of one’s life professionally as well as personally. The state of perpetual tiredness cannot be explained by an underlying medical condition, and while it is worsened by physical or mental exertion, it doesn’t go away with rest.

Because of how debilitating the disease can be to day-to-day, routine functioning, “it should be called Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). [That] more aptly describes it,” Dr. Raj Patel, a physician from California, said in 2018, noting that simply calling it “chronic fatigue syndrome” diminishes its scope and seriousness.

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What are the symptoms of chronic fatigue syndrome?

Experts note the fatigue that accompanies CFS is often severe enough to decrease a person’s activity and productivity by 50%, in addition to manifesting through some of the following symptoms:

• impaired concentration or short-term memory, resulting in difficulty thinking quickly, remembering things, or paying attention to details;
• frequent sore throat;
• frequent headaches;
• multi-joint pain without redness or swelling;
• muscle pain;
• enlarged lymph nodes, or swollen glands, in the neck or underarm area;
• not feeling rested or refreshed after waking up from sleep;
• insomnia or other sleep disorders;
• feeling sick after exercise, or other strenuous activities; and
• ortho-static intolerance, i.e., feeling dizzy or light-headed after shifting to a standing position from being seated or lying down.

While these symptoms must persist for at least six months, to qualify as CFS, their severity may vary across that time. “The symptoms vary from mild — you feel tired on some days; moderate — reduced mobility and disturbed sleep pattern; to severe — most daily tasks are affected and most of the time is spent in bed,” Dr. Kaur explained.

What causes chronic fatigue syndrome?

While the exact cause of CFS is unknown, researchers have hypothesized that it may be caused by disruptions to how our immune system responds to infection or stress. But what triggers these disruptions — or whether it is the result of different triggers working together — is still largely unknown.

Researchers are investigating whether any specific infections are linked to the condition, but they haven’t found any yet. “It’s certainly conceivable that in a sub-population [of people with CFS] there has been some change in their immune function triggered by an infection … [that is] now affecting their brains and giving rise to their symptoms,” Dr. Joseph R. Berger, a professor of neurology at the Perelman School of Medicine in Pennsylvania, told Brain&Life magazine — adding, however, that he doesn’t believe a single infectious agent could be responsible for all cases of CFS around the world.

Some experts note that individuals may also be genetically predisposed to CFS.

Lifestyle factors may also contribute to CFS. Published in JAMA Psychiatry, a 2009 study found that childhood trauma — including sexual or emotional abuse, or emotional neglect — was associated with a six-fold increased risk of CFS.

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How is chronic fatigue syndrome diagnosed?

At present, there are no screenings for CFS.

“It is difficult to diagnose this syndrome as there are no specific tests. Some criteria have to be checked, and individual assessments made. Other suspected diseases — like anemia, thyroid, liver and kidney problem, etc. — need to be ruled out before finalizing the diagnosis,” Dr. Satish Koul, a general physician at Columbia Asia Hospital in Gurgaon, told LiveMint.

As a result, patients are often forced to live with the condition for years before they are diagnosed and treated — if they are at all.

“They said there was nothing wrong with me. They did 50 pages of blood work and said everything was fine,” Gabriella Marinaccio, a 30-something woman with CFS from the U.S. who described her diagnosis ordeal to Brain&Life.

Often, if doctors don’t find anything unusual after conducting tests on patients who complain of fatigue, they simply dismiss the patient or tell them to seek psychiatric care. So, while Marinaccio did get her diagnosis, it is estimated that 84 to 91% people with CFS don’t.

How is chronic fatigue syndrome treated?

Just like there’s no test to confirm CFS, there is no specific cure for the condition either. However, practitioners may adopt different approaches to relieve the distinct set of symptoms each individual experiences.

At the same time, “because the cause of chronic fatigue syndrome remains unknown, there is no way to prevent it,” according to Harvard Health.

“In the absence of any treatment, all I can do for now is make some changes in my lifestyle, like cut down on caffeine, introduce exercises very slowly back into my daily routine, treat existing pain with medicines — but these are all temporary. The most effective treatment is to learn to live with it. The earlier you accept it, the better it is,” one woman with CFS told The Swaddle in 2020.