CFS Name ChangeAug. 23 ProHealth Newsletter

Discussion in 'Fibromyalgia Main Forum' started by phoenixrising2, Aug 24, 2006.

  1. phoenixrising2

    phoenixrising2 New Member

    The following is for those of you who may not receive ProHealth's newsletter. If it has already been posted, please forgive me!


    FOUNDER'S CORNER

    The Campaign for a Fair Name: Why Now, and What Next?


    As you know, ProHealth launched Campaign for a Fair Name in the August 9 CFS Newsletter - with the goal of replacing "Chronic Fatigue Syndrome" with a name that is fair and accurate and will validate the seriousness of this often-disabling disease. Since then, many of you have asked how we decided to launch this drive for change, and what we'll do next. The answer's in these e-mails.

    Dear Rich:
    I find your new newsletter format and articles within it very much improved and very interesting, even the Fibro ones.... I am curious, however, as to what made you start your name change effort (yes, yes!!) when you are so involved with helping get the CFS name known to the public via the Centers for Disease Control's national CFS Awareness Campaign. Best regards, and waiting for marching orders on the former.

    - Billie Moore

    Dear Billie:
    Thank you for the vote of approval regarding the new newsletter format. We still have lots of work ahead of us, but we are up for it. And you will get a kick out of this: One of the reasons I wanted to launch Campaign for a Fair Name is because a very smart lady reminded me of how miserable the name is -particularly when the "syndrome" part is left out. She brought me back to my senses when I had been away from the company for too long. You are that lady. Plus, I have had enough of this FATIGUE nonsense - so demeaning - and it is time for a change.

    We have the power to do it, and anybody who tells us we can't should step aside. That said, however, I doubt that I am the leader type to take this all the way to the end. What I do have is the ability to find that leader and stand behind him or her until the job is done.

    You are not the first person to ask why I would be involved with the CDC's CFS Awareness Campaign, yet simultaneously launch an effort to get the name changed. The reason is simple: I am trying to promote awareness of the disease, its diagnosis, and its treatment - not the name of the disease. According to the CDC, approximately 90 percent of patients still have not received a diagnosis. What a tragedy! They need to know that they have a real disease, and that there are some treatment opportunities, and that there is hope. Regardless of the inaccurate name.

    We have received several hundred letters regarding Campaign for a Fair Name, and I am looking forward to putting together a group of dedicated volunteers who will get us some fair treatment. But:

    First, we need to establish a forum where patients can submit suggested names and discuss options.

    Second, we will figure out how to allow patients to vote for the names. We may have to use a non-profit organization to handle the voting. ProHealth should not be involved in any official vote counting.
    And once we've accomplished that, we will need to get the name changed.

    I think all three steps are doable, and I'll keep everybody posted as we move ahead.

    Best regards,

    Rich Carson
    ProHealth Founder and CFS Patient

    PS. Thanks for all the wonderful letters offering support for the Campaign for a Fair Name. We'll need more assistance, however, so write to us today with your contact information and ideas at CFSnamechange@prohealth.com
  2. phoenixrising2

    phoenixrising2 New Member

    Did you mean Dr. De Meirleir's test that identified CFS patients with 99 percent accuracy based on a test for the presence of “low molecular weight” RNase L in the blood?

    It seems pretty definitive to me.

    Maybe, just maybe, they'll change the name and doctors will begin to believe all this research before I die of old age (or complications of this disease that doesn't exist). LOL

    Hugs,
    Phoenix