Thursday, June 11, 2009

What's in a name?

What's in a name? that which we call a rose
By any other name would smell as sweet
William Shakespeare

What's in a name? that which we call CFS
By any other name would feel as awful

Here are a few names for my disease:

Chronic Fatigue Syndrome (CFS)
Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)
Myalgic Encephalomyelitis (ME)
Post-Viral Fatigue Syndrome
Chronic Epstein-Barr Virus Syndrome
Low Natural Killer Cell Syndrome

You can see even more names and historical background here.

Why do I personally call my disease Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)? It's just what I've gotten used to. Sometimes I use the more "official" term Chronic Fatigue Syndrome (CFS) as well, though I'm not really a huge fan of the term.

To tell you the truth, scientists could call the disease "cat poop" and I wouldn't really care as long as they were doing real research and making progress in finding a cause, treatments and a cure for it...especially a cure. OK, maybe I would care if they called it "cat poop," but I think you get my point. To me the name should not be the main issue. No matter what it's called, I'll still have the same symptoms.

Unfortunately, it seems that the name is an issue.

To many people CFS doesn't sound as serious as "influenza" or "eczema," and it apparently doesn't sound as serious as "swine flu" either (don't get me started on swine flu...). Much of the public, media, researchers, and healthcare workers just don't seem to take this disease seriously because the name Chronic Fatigue Syndrome sounds so benign. The name makes it appear that people with this disease are just tired, and it ignores all the other wacky and unfortunate things going on with our bodies.

Do I wish this disease were known by another name other than CFS? Yes. Am I passionate about changing its name? No. Do I support those who want to change its name. Yes. Do I have a preference for what it should be called instead? No. Why am I writing about the name issue? Because it was on my mind. Should I keep asking myself questions and then answering them in italics? I think not.


Shelli said...

With the new research out identifying CFS as a mitochondrial dysfunction, I think they should call it Acquired Mitochondrial Dysfunction Syndrome. That sounds quite a bit more substantial than chronic fatigue syndrome, and it is way more accurate than any of the alternatives. Just my two cents! Think I should lobby the CDC with it?

Anonymous said...

ME has been around as a known disease since the thirties in epidemic form, and was named ME in the fifties. That is it's name. All this CDC crap is just that- crap. Either it is ME or it isn't. Dr. Hyde (top specialist who hasn't sold out to the US CDC says either it's neurological ME or another, missed disease/diagnosis. Check out the latest on Osler's Web author Hillary Johnson. Cheers, Aylwin