Another advocate and I spent the better part of two hours today arguing
amongst ourselves whether CFS=ME.

I wrote:
> If you don't like the name CFS, feel free to bang your head against the
> wall demanding that CDC change it. I made my decision long ago that it
> was
> more important to find a cure than to argue semantics.

To which the response was:
> ur driving me crazy, the lack of logic is driving me carzy! I'm blocking
> your email for my sanity

How much more good could have been done for the cause if that two hours
each had been devoted to writing letters to the editor, letters to Congress
begging for research funding, letters to the new head of CDC asking for
legitimacy? Instead, it was wasted arguing semantics which doesn't change a
thing for the patients who are suffering from it.

And this is why CFS advocacy is in trouble, because there are too many
activists hung up on semantics -- is it CFS, is it ME, is it ME-itis, is it
ME-opathy? -- rather than getting down to the nitty-gritty that whatever the
hell you want to call it, it's a problem. It's a big problem. It's a $26B
problem in the US alone.

Let's work on solving the problem, and not on endlessly arguing about a
name that we, as patients, do not have the power to change. (Lord knows,
enough attempts have been made since 1988 to change it, or even to adapt it
from CFS to CFIDS, without success.)

A wise person once said to me "if you're not part of the solution, you're
part of the problem". Fighting amongst ourselves because some people
prefer the technically/historically correct name ME, and others are willing to
use the CDC-mandated term CFS, is part of the problem.

Let's keep our eyes on the goal here: to find a cure. If that means we
swallow our pride and call it CFS because that's the currently-accepted
terminology, so be it.

CFS is not accurate. It's disparaging. It's a misnomer. But, at the
moment, in the US, it's the name we're stuck with. You can waste your time
arguing with me about my choice to use a term people recognize versus a term
that CDC doesn't even acknowledge exists, or you can educate other people,
you can plan a fundraiser, you can do many other far more productive things
than calling another activist an idiot because she doesn't care what they
call it, as long as they cure it.

Personally, I'll worry about the name once we have a solution to the root
of the problem, getting a million patients healthy and back to work. Isn't
that a bigger problem than what to call it?

Karen M. Campbell
Sacramento, Calif.
Founder, www.CFSFacts.org -- dispelling the myths and providing the facts