Did you see ProHealth Newsletter??

Discussion in 'Fibromyalgia Main Forum' started by findmind, Jul 26, 2006.

  1. findmind

    findmind New Member

    Three cheers for Rich Carson!

    I had just posted about the words Chronic Fatigue and Chronic Fatigue SYNDROME being two very different entities, and lo and behold, Rich wrote a column about that very thing.

    He's also calling us to action...to change the name to Myalgic Encephalo-myelitis!

    I've been writing to do this for the past 15 years...it hasn't helped.

    However, with Rich on board and leading the charge, maybe we'll get somewhere!

    There's always hope!
    findmind
  2. Sandyz

    Sandyz New Member

    I was so glad to see Rich addressing his name issue. It really is so bad and would help us so much is we only had a respectable name for this.
  3. findmind

    findmind New Member

    BUMP!
    Can't believe only one response!

    findmind
  4. phoenixrising2

    phoenixrising2 New Member

    Let's all get behind Rich!
  5. dononagin

    dononagin New Member

    bump it up!
  6. Pianowoman

    Pianowoman New Member

  7. tansy

    tansy New Member

    PWME in the UK have resisted the name change to CFS because it belittles ME and distracts attention away from the realities of the illness.

    The terms CFS and CF have been used to muddy the waters, this has enabled the Wessely School, the insurance Industry, health care providers, and govt departments, to avoid engaging with ME.

    There has been a parliamentary (Gibson) Enquiry in the UK; all the patient groups who were invited to sumit oral evidence used the term ME.

    Perhaps a good first move would be to rename this message board ME and FM and also for future Immune Support literature to use this Dx label as well. I have no desire to stop those who suffer chronic fatigue finding the info and support they need, what I would like to see is a change in the terminology used.

    I hope everyone has signed the petition to change the unhelpful CFS label back to ME.

    TC, Tansy
    [This Message was Edited on 07/28/2006]
  8. 1sweetie

    1sweetie New Member

    Thank you for posting this. Where is the petition and is there a place to write letters?

    I have sent several letters to my senators as directed by CFIDS Assoc in the past but my email address changed and I am no longer on their advocacy list. I've got to get back on the "do something list".

    It would mean so much to all of us for the name to change. I read an article that surveyed "normals" and they were given names and asked to rate their thoughts of different diseases. It was amazing how their feelings changed when ME was used instead of CFS. It was given the respect that we deserve. I am personally tired of people telling me they are tired also and fatigue is just one of the symptoms of what is wrong with us.

    As a board and using family and friends, we should be able to make a difference.