The Disease We Barely Know Anything About

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We don’t know what causes Chronic Fatigue Syndrome, how to treat it or even what to call it. What’s up with this mysterious disease?

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You’ve had the flu before, right? Well, now imagine feeling worse than that all the time. I’m talking about “Chronic Fatigue Syndrome,” hereafter referred to as CFS for the sake of my brain not exploding all over the camera lens.

Maybe you’ve heard of this disease and thought, “Huh, I’ve been a little tired lately. Maybe I’ve got it?” Well hold on there boss, because to be properly diagnosed with CFS you have to be sick for at least 6 months straight. CFS is so debilitating that bed rest doesn’t even make it better.

It’s not even worth the Netflix binging, people.

And here’s the kicker: we barely know anything about how to diagnose it, what causes it or how to treat it. Some people don’t even think it’s a real biological disorder. Skeptics called it the “yuppie flu” or “shirker syndrome” for awhile. And for years doctors thought it was psychosomatic.

Less than half of today’s medical textbooks have any information about CFS as well. And only one-third of medical schools even teach it in their curriculum.

One thing we sort of know about CFS are its symptoms. Obviously, because of the name, “fatigue” is a big one. But that word barely does it justice, because patients are so weak it interferes with their daily activities, as well as their concentration and stamina, causing at least 50% incapacitation.

In addition you’ve got to have 4 or more of the following major symptoms over here. I’m not going to say them all out loud, or else we’d be here for a week, so just hit pause and check them out.

Now these are all the possible minor symptoms that could coincide with what we’ve already covered. As you can see, they’re both physical and psychological.

So you get an idea of how difficult it is to diagnose this thing. It gets even more complicated because CFS affects its victims in cycles. They’ll have periods of illness, followed by feeling okay, with sometimes even a total remission of their symptoms.

“Jeez Cristen, that sounds terrible,” you’re probably saying to yourself, “What causes this awful disease?” Well… I don’t know. Scientists haven’t identified what causes CFS. And they’ve studied all sorts of things as triggers: viral infections like Mono, immune system disorders, allergic sensitivity, stress and even nutrition.

One thing we do know is there’s no evidence that CFS is contagious. But it affects way more women than it does men. Current estimates by the Institute of Medicine say that somewhere between 836,000 and 2.5 million people in America have it. But less than 20% of them are diagnosed, because this thing is so hard to pin down.

So ok, how do you cure a disease that comes and goes, has a myriad of complex symptoms and can barely be diagnosed because it resembles many other illnesses?

You don’t.

At this time, all we can do is treat the symptoms of CFS as they vary over time. And if you think you have it, get ready to take a battery of tests.

The 2013 Magill’s Medical Guide actually has this quote about CFS in it: “Medical treatment and diagnostic testing can be costly as well as useless.”

Usually treating the disease is a combination of the following: antidepressants, nonsteroidal anti-inflammatory drugs, psychological counseling, physical therapy and a mix of homeopathic remedies.

So that’s all the stuff we don’t know about CFS. Oh, and we can’t agree what to call it either. The CDC only uses “Chronic Fatigue Syndrome” because exhaustion is the primary symptom. But some patients find that misleading and prefer “myalgic encephalomyelitis.”

Yeah, trying saying that three times fast. Or just one time slow.

SOURCES:

Chronic fatigue syndrome. By: DeLuca, Patrick J., Ph.D., Alder, Richard, Ph.D., Magill’s Medical Guide (Online Edition), January, 2013

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