Health And Wellness

Chronic Fatigue Syndrome Isn't What You Think —​ It's Much Worse

Photo: Kite_rin / Shutterstock
woman looking depleted with head against kitchen counter

When people hear Chronic Fatigue Syndrome, they have a tendency to cast it off as something that isn't very serious and just another term for laziness. The truth is that Chronic Fatigue Syndrome (CFS), or myalgic encephalomyelitis (ME), is a debilitating and frightening health condition that leaves people bedridden and dependent on others to care for them.

Writer Stephanie Land said, upon discovering that her friend Whitney Dafoe had CFS, "I thought that it meant normal or mundane tasks overly exhausted him and that was the end of his affliction. I thought he'd get over it, eventually." 

But people with CFS or ME don't get over it.

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Dafoe wrote in his blog, "The most fundamental symptom [from ME] is debilitating fatigue. But fatigue is much too mild a word. I like to compare the state I'm in now to staying up for two nights in a row while fasting, then getting drunk. The state you would be in on the third day — hungover, not having slept or eaten in three days — is close, but still better than many CFS patients feel every day.

Total body shut down would be a better phrase because you are at a point where your body physically does not have the energy to keep going."

CFS/ME is an incapacitating and complex disorder with the main characteristic including overwhelming fatigue that doesn't improve with rest or sleep and gets worse with any physical or mental activity.

This illness affects the organs and various systems of the body, causing digestive issues, joint pain, impaired memory, and concentration, and insomnia.

"The level of functional impairment in people who suffer from CFS is comparable to Multiple Sclerosis, AIDS, end-stage renal failure, and chronic obstructive pulmonary disease," said William Reeves, former chief of the Viral Diseases Branch of the CDC. "The disability is equivalent to that of some well-known, very severe medical conditions."

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Dafoe once had a promising career as a photojournalist but is now no longer able to speak or do anything besides sit up in bed.

His parents care for him around the clock and he has a team of doctors working on finding something that will improve his quality of life. The last post on his blog in June of 2013 was, "Really sick. I can't talk. Can't type/text enough to communicate. Haven't had a conversation with someone in six months."

What Dafoe is going through is heartbreaking, and the fact that he isn't the only one is even worse. An estimated 836,000 to 2.5. million Americans have CFS/ME.

And unfortunately, researchers have found that many people who have the disease's defining symptoms haven't been diagnosed as such; they estimate upward of 91 percent of people with the illness haven't been diagnosed.

Since many people don't take the disease seriously, when patients go see a doctor they're often dismissed and told that it's all in their head or that they should snap out of it on their own accord.

However, powering through their symptoms can be deadly for people like Dafoe, who wrote, "I spent the first years of this illness pushing myself. I thought it would eventually go away, and I tried to just keep going and do as much as I could... If I had known more about CFS or the consequences of overexertion, I may not be nearly as sick as I am today."

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Obviously, there needs to be a greater awareness of CFS/ME, but it has been consistently ranked as one of the lowest NIH (National Institute of Health) funded diseases. In 2014, the NIH devoted five million dollars to CFS/ME research, a figure that amounts to less than $5 a patient.

"CFS destroys millions of American lives, tears families apart, and shatters dreams, as people are isolated in bedrooms, nursing homes, or left homeless with very little medical or societal understanding or support," Dafoe concluded. "Anyone could wind up sick and just drop off the map. And we will likely lose everything that person would have become or contributed."

Because CFS/ME affects all genders, races, ages, and socio-economic backgrounds, it could happen to us or someone we love. It's time to stop discounting this very real and scary illness and take action.

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Christine Schoenwald is a writer, performer, and frequent contributor to YourTango. She's had articles featured in The Los Angeles Times, Salon, Bustle, Medium, Huffington Post, Business Insider, and Woman's Day, among many others.