Sunday, August 17, 2008

The name game

From the second we landed Sunday's upcoming Obama gig, I knew that we had to include "Everybody Knows About Me," our song about living with undiagnosed ME, in the set list. What better opportunity to raise awareness about a little-known but devastating illness than in front of a politically motivated crowd poised to vote for someone who's pushing for universal health care?

The problem: What do I call the illness when I introduce the song? There are actually three major possibilities, and all of them are problematic:

Myalgic encephalomyelitis (ME). The name given to the illness in 1934, after the first documented outbreak. Very few people have heard of this.

Chronic fatigue immune dysfunction syndrome (CFIDS). Stresses abnormalities in patients' immune responses. Even fewer people have heard of this, as the term isn't used outside the United States.

Chronic fatigue syndrome. This name was invented in 1988, and it's the one most people are familiar with. Unfortunately, it also trivializes the illness by implying that sufferers experience nothing worse than greater-than-average tiredness.

Recently I talked to someone I know with ME -- the guy who originally inspired "Everybody Knows About Me" -- about my dilemma. His opinion was that I should say "myalgic encephalomyelitis," the name that's been around the longest, and leave it at that. He abhors "chronic fatigue syndrome." Though I understand where he's coming from, I think it's a mistake not to mention the term everyone knows. What good is it if our listeners come to sympathize with ME sufferers, but think that people with CFS are malingering whiners?

After kicking the issue around with Ron the Drummer during rehearsal today, I think I've finally come up with a decent introduction: "I wrote this song about someone living with undiagnosed myalgic encephalomyelitis. if you've never heard of that, it's probably because it's commonly known as chronic fatigue syndrome, which is a silly name for a very serious illness."

Man, people who advocate for breast cancer research never have to deal with this kind of thing. But I guess that's exactly why ME needs more advocates.


David Powell said...

I think that's a very good introduction.

cinderkeys said...

Thanks! Now I just have to practice it in front of a mirror. :)

Anonymous said...


The name is important, it depends on how the person got the illness in the first place. If it was a result of a virus, then it is post viral fatigue syndrome! I tell folks I have ME, as to me, that is what I have.

If you would like more information on the illness, you can always check out the ME Association website or the Afme website.


cinderkeys said...

Hey Miriam,

Thanks for your comment. What do you do, then, if you have no idea how you got the disease? Very few doctors have any idea how to diagnose this.

Also, from a political standpoint, "post-viral fatigue syndrome" sounds only a little better than chronic fatigue syndrome. The "post-viral" bit makes it clear that it's not psychosomatic, but as I understand it, "fatigue" vastly underestimates what sufferers feel. I've been fatigued. It wasn't all that unpleasant. There was no pain involved. ME/PVFS sufferers experience, well, real suffering.

I'd be interested to hear your thoughts.

Anonymous said...

Be very cautious when choosing an organization. Some of them understand the nature of the disease, but others do far more harm than good.

The latter tend to *seem* reasonable, if you don't know the biomedical facts about the disease.