Recognizing Chronic Fatigue Syndrome

Learn how to spot the signs and symptoms of this debilitating ailment that’s difficult to understand.

| July / August 2018

I couldn’t take a shower without running out of breath. I couldn’t lift my head from the pillow without a nauseating dizzy spell. Walking to the mailbox put me on the couch for two consecutive days. Within a few short weeks in the summer of 2009, I went from being a full-time student, researcher, and athlete to a shaky, exhausted mess. My fatigue and other symptoms were so crushing, I was forced to bow out of grad school, take disability leave from work, and let go of my previously active life.

Several months dragged by before I was officially diagnosed with chronic fatigue syndrome (CFS), sometimes called myalgic encephalomyelitis (ME). Before my own personal experience with this debilitating illness, I didn’t know much about it. I thought that people who had it were just “more tired” than usual. Perhaps they were suffering from overtraining, or burnout from the never-ending stress of life. But in reality, ME/CFS is its own monster, with a whole host of long-lasting symptoms but very little acknowledgment within the medical community.

What is Chronic Fatigue Syndrome?

Even well into 2018, the clinical understanding of ME/CFS is limited; there’s still no agreed-upon etiology for this illness. In fact, the definition of chronic fatigue syndrome from the Mayo Clinic is “a complicated disorder that can’t be explained by any underlying medical condition.” The fatigue felt by those experiencing the illness may worsen with any physical or even mental activity, and it isn’t eased with rest.

One of the frustrating aspects of ME/CFS is the wide variation of patient presentations, making it hard to diagnose and even harder for people to take seriously. I know that my experience, symptoms, and healing process are unique to me, and my story isn’t the same as many others who live, or have lived, with ME/CFS. For me, it was a sudden onset of dozens of symptoms at once — an acute, disabling disease that morphed into a chronic one. Others with ME/CFS might go through a slow decline, descending over weeks or months into the pit of fatigue, aches, brain fog, and other life-altering problems.

With its many different symptom profiles and onset styles, ME/CFS is a serious issue in our country today. It’s been estimated that more than 2 million Americans have ME/CFS, and about 90 percent of them haven’t been diagnosed. This illness affects twice as many women as men, and it’s most common among people over 40 years of age. But while one study suggests a relationship between ME/CFS and social risk factors, overall, ME/CFS seems to strike without preference for race or educational background. From an economic standpoint, we’re losing more than $9 billion every year in productivity due to ME/CFS, and those who are diagnosed with this illness report greater psychological distress and have higher rates of unemployment than those who don’t meet the diagnostic criteria.

Are You Experiencing CFS?

It’s important to distinguish ME/CFS from “typical” fatigue, burnout, or even chronic fatigue as a symptom of another condition entirely. While there’s still some debate as to the diagnostic criteria for ME/CFS, many physicians turn to the Centers for Disease Control and Prevention (CDC) for their guidelines when confronted with overtired patients. In order for a patient to receive an official diagnosis of chronic fatigue syndrome, they must be experiencing a drop in regular activity levels due to severe fatigue that has lasted more than six months; worsening ME/CFS symptoms after regular physical or mental activity; and trouble falling or staying asleep.

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