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Will the CAA support a name change to ME/CFS?

Discussion in 'Action Alerts and Advocacy' started by Roy S, Oct 14, 2010.

  1. lancelot

    lancelot Senior Member

    southern california
    Canada has got it right calling it ME/CFS.

    I'm sure there will be another name change when we know the cause and pathophysiology of this disease.
  2. rescindinc


    boca raton, FL
    Ladies and Germs, Boys and Girls, we all hate people who say "i told you so!", but there really is only ONE person on this planet who called for the removal of the "F" word at the very first opportunity to do so.

    which was the VERY first International "CFS" Meeting on April 15, 1989 at the San Francisco, Hilton Hotel. this was the very first meeting of so called "experts" after the truly awful "HOLMES CRiTERIA" published in the

    Annals of Internal Medicine in March of 1988. this was supposed to replace CEBV for "Chronic epstein Barr virus, the Herpes virus that causes MONO. This was more than a decade before Marc Iverson, the founder of the CAA resigned and listed as his FIRST

    reason, the damn name. and all the baggage that this included. He had pushed CFIDS for 10 years. He should have stolend CIND from the guy who came up with that. Iverson stole "lobby day" and "May 12th" from the same guy. and that his successor, KKK, wanted to keep the CFS/CFIDS moniker. YOU can find out who said that the name would cause misery and premature death for millions of people all over the world.

    go to www.rescindinc.org . and you can read the TRUE history of what happened.

    this same person said that we should all stop fighting each other long enough to work together and LOBBY Congress and the media for at least ONE day each year with things we have in COMMON with each other...that was called

    CIND for "Chronic Immunological and Neurological Diseases"> Chronic means "of long duration" the other words are self explanatory. this same person was the one who linked Gulf war syndrome with M.E and CFS

    on International TV in more than 125 countries on CNN on May 4th, 1991 on Larry King Live. This person then incorporated a non profit to promote MAY 12th, International M.E.and CFS awareness Day in 1992.

    He included gulf war illnesses, Fibromyalgia Syndrome, M.E. and CFS, Multiple chemical Sensitivities, (which is now referred to as E.I. for Environmental Illnesse _blame the patient again) the government vermin

    keep saying that "FMS and M.E. and CFS" are women's diseases, but gulf war veterans are 95% MEN> and they are as sick as many of us! So, go To RESCIND, INC's site and see who was correct FIRST and often!
  3. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA

    no respect, he just don't get no respect.

    Kim's "Rebranding CFS" sure didn't get us respect. 20 years of her and I don't think we've made any real progress overall.

    By the way, Tom, Llewellyn King now has 87 replies to his article.
  4. Sasha

    Sasha Fine, thank you

    Mine was one of them! I'm really pleased he got so many. I think if we can praise and encourage good reporting like this when we see it, we'll get more.
  5. alice1

    alice1 Senior Member

    The last time I went to see an infectious disease doc(mainly HIV/AIDS) here in Toronto was last December and I was promptly told that they didn't refer to my illness as CEBV for which I had been diagnosed but CFS.There was no mention of ME/CFS.
    The one battle that was won by Dr Bested is that no doctor in this country can say tell you that you do not have CFS.If ME/CFS is the official name then I will definitely be using it.Thankyou sing for pointing this out I had no idea.Once again educating doctors.
  6. jspotila

    jspotila Senior Member

    The Board has authority to set policy re: the name change for the Association. The Board is aware of the CFSAC motion passed on Thursday, and I am assuming it will be on the agenda for discussion at our next meeting.
  7. bakercape

    bakercape Senior Member

    Cape Cod. Mass

    of starting a post asking if the CAA will support a name change why not just aske them.

    And does it really matter? They are not the ones who get to decide what our illness is called. What they decide seems totally irrelevant if the government is saying it is ME/CFS now. What choice will they have unless they want to be named after a disease name that does not exist any more.
  8. jspotila

    jspotila Senior Member

    November. We meet monthly by conference call.
  9. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    or maybe she's a liar.

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