Wednesday, March 2, 2011

What's in a name?

"In the US, myalgic encephalomyelitis was never used."
We need to stop wasting our limited energies fighting amongst ourselves over who uses what name for this Damned Disease.  I don't have the power to change the name; if you want to write a long diatribe about CFS versus ME, send it to someone in government who does have the power to change the name.
My purpose in being here is to provide the facts to people who know little to nothing about the disease.  These are not people who are going to know to google ME.  They've just been diagnosed, or they have a friend who's been diagnosed, or heard about it on TV, and want to learn more.
If they join the CFS Facts e-group, they'll receive a welcome packet that includes the educational comment that it's also known as ME.  If they read this blog for more than 5 minutes, they'll come across that term.  But until someone educates them, they will not know that the preferred term is not CFS.  They won't find the information that I want them to learn if I insist that I'm only going to call it ME.  "In the US, myalgic encephalomyelitis was never used."  Only the most activist doctors are willing to diagnose ME.  They're going to tell their patients "you have CFS", and since that's the name the patients are going to be googling, that's the name I'm going to use. 
I teach CFS 101.  Those of you who are teaching graduate level courses can call it anything you like, because you're talking to people who are familiar with those other names.  I'm not.
Frankly, I don't give a flying rat's ass what they call it, so long as they cure it.
Katrina Berne notes "The CDC agreed to study the matter [of a name change] but later announced that the adoption of a new name is premature. In a catch-22, the present name trivializes the illness, thereby discouraging the research funding needed to uncover the pathophysiology of the disorder, which would help determine a more accurate name." 
And while this is true, that the name discourages government funding, we have patient-funded groups, we have WPI, who also don't give a damn about the name.  Judy Mikovits was looking for a virus not a name.
My time, money, and energy are going into finding a cure.  If you want to waste your time, money, and energy on something wholly non-productive, be my guest.  Because I'm going to get one sentence into your ten-page tirade and stop reading.  I have better things to do than to justify why I use the name that my target audience is using.


Mary Schweitzer said...

Short but sweet. Strangers will be staring at me all day on the flight home tomorrow because I won't be able to stop giggling. You bet. Call it what you want, but FIX THE FRICKEN' THING!

[I went to the annual conference of the HHV-6 Foundation, where we are called "patients with long-term, serious, viral infections." That's it. And they're studying them.]

CFS Facts said...

"patients with long-term, serious, viral infections" is what we are, and therefore, that's an appropriate name. Unfortunately, it's not specific enough for the powers that be, who want to subdivide "patients with virii" into Virus A, Virus B, Virus X... and to ignore the fact that everything about CFS looks like a virus.