Impact over accuracy

Discussion in 'Fibromyalgia Main Forum' started by desertlass, Sep 7, 2006.

  1. desertlass

    desertlass New Member

    We know a name change won't cure us, or even make our immediate lives better. We may not have been born in a lucky time during the historical arc of this illness, but we can do a lot of good for the future of it. I think if the CDC wanted to, they could lead the way in making a simple statement of "formerly known as Chronic Fatigue Syndrome". Hey, if Prince can do it, why can't we? Just a joke. Kinda.

    Okay, let's look at and learn from AIDS. First people were alarmed by what it did. Then they learned why it was called AIDS-- Acquired Immuno-Deficiency Syndrome. Everyone said "What's that?" in the beginning. No one complained that it sounded too vague, even if they saw it as shameful. People just said the word "Aids" and everyone knew what was meant. One day, after a long struggle, most people saw the importance of stopping it.

    Our problem is that no one is alarmed by us. No one knows what we go through. The shame and stigma is private because we keep it that way. That's our blessing and our curse. No one worries that it could affect them. No one in my family has taken up the banner. They are all trying to take care of me and my children. If healthy people were worried about chronic fatigue syndrome, they would accept the name whatever it is and push for funding. I would love to be involved in awareness and campaigning and fundraising. But, I have so little resources of energy to do this. I am housebound, often bedridden, and I have children. In case this thing is hereditary, I want to at least help pave a smoother way for them. If a name change helps, then I am for it. However, I would be much more hopeful if there were front page articles around the world that said, "Chronic Fatigue Syndrome More Serious and More Widespread than Previously Thought"

    If we come forward with a new name, we need to bring more visibility, more clarity and more emotional weight to this problem of not being taken seriously. A long scientific name that describes the etiology and every system it hits is not going to do that. It will just be another obfuscating element in this whole labyrinth.

    I suggest a name that communicates what our visible bodies do not. A name with words like "Severe" "Profound" "Radical" and also the fact that it never leaves, and yet is not always present, such as "Periodic or Intermittent" for those who don't see us except for our functional hours, when we can pass for healthy. I know that we need medically accurate, but I don't think we need scientifically specific. We don't want to paint our future into a corner with something that could become outdated. When I think of a full name, I'll post it over on the suggestion board.

    Thanks for reading, if you did. Does anyone know what comes next after getting a bunch of sick people to decide on a name?
  2. Leaknits

    Leaknits New Member

    It could be worse, I suppose.

    Before AIDS became as world-wide as it is now, it was called G R I D: Gay-Related Immune Deficiency.

    Then, somehow, the medical community at large "discovered" GRID in non-Gay persons with the result a name change was necessary.

    So far as I can tell, there is still (decades after Patient X, the apparent originator of the illness) no cure.

    All there is, is treatment for symptoms.

    Does this sound similar to CFS, FMS, myalgic encephalytis, myalgic encephalomyelitis? It certainly sounds similar to me.

    I still, despite all my chatter in this post, propose a name change: myalgic encephalomyelitis just might send our drs on a search 1) to find out what the terms mean and 2) to do something besides throw pills and psychobabble at our symptoms.

    Lea.