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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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August is "Call it ME" month.

Discussion in 'Action Alerts and Advocacy' started by gregf, Jul 7, 2011.

  1. Wildcat

    Wildcat Senior Member

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    Yes, Gregf, you have hit the nail on the head.

    Personally, I would like to see the term 'CFS' consigned to the further reaches of Dante's circles of Hell and totally obliterated for all time. But in legal and diagnostic terms we need to take considerate care of the very many Myalgic Encephalomyelitis patients who have been wrongly given an offical diagnosis of 'CFS'.
     
  2. Guido den Broeder

    Guido den Broeder *****

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    Rotterdam, The Netherlands
    WillowJ is entirely correct. CFS is not something you can 'have' or 'suffer from'. It is a construct, for the sole purpose of selecting patients for research. I keep wondering how many people have actually read the Fukuda article.

    Regards,

    Guido
     
  3. gregf

    gregf Senior Member

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    Sydney Australia
    Thread title : August is "call it ME month".

    Relaunching for August 2011,

    I will donate $1,100 to Count ME In, which goes to the W.P.I, if .....
    Cort can go one calendar month calling our illness ME and not CFS or CF,
    in informal use, in posts or blogs on the PR forum.

    Of course, quotes of other's work are not counted nor any semi-legal documents which should be ME/CFS for now.

    I am more thinking of the informal use, between each other here, and what we say to friends.

    If we catch Cort saying CFS, then he has to start again the next month.
    But I will jackpot it $100 for each month that is necessary.

    Cort is graciously and enthusiastically helping.

    Without starting another name argument, I think we should use the name ME as a weapon for our cause, just as CFS was used against us for 25 years.
    And we should start here in this wonderful forum, among our selves.

    I hope others will join in, make a promise to call it ME here, and with our friends and family.
    That always leads on to a great opportunity to explain our cause.
    I would love to hear from any converts.
    Make this worth while for ME guys.

    Greg. :Retro smile:
     
  4. Ember

    Ember Senior Member

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    I'm a convert. I enjoy telling people that I don't have chronic fatigue syndrome anymore. What a relief!
     
  5. gregf

    gregf Senior Member

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    Sydney Australia
    Hi everyone.

    Just to remind you all that I will be donating $1100 to CountMEin at the end of August provided Cort meets the challenge of saying ME instead of CFS in casual usage this month.

    I know our American friends will say CFS as that is what the doctors and insurance system calls it there. But please give it a try. It has benefits. Love to hear from any American converts.

    Greg. :cool:
     
  6. gregf

    gregf Senior Member

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    Sydney Australia
    Letting all our supporters know (those who replied in the thread), the donation has gone thru to Vikki at CountMEin, and on to WPI.

    The following note was sent to the WPI.

    Hi Andrea.

    I just wanted to let you know I have put thru a $1,100 donation to WPI via CountMEIn.
    This was part of the "August is call it ME project" by those of us who encourage the use of the name ME.

    By Greg and Cort at the Phoenix Rising forum.
    http://forums.phoenixrising.me/showthread.php?12652-August-is-quot-Call-it-ME-quot-month

    And our supporters ...

    In the PhoenixRising forum.

    MaryB, Jace, Sasha, Eric_S, ggingues,
    Enid, Tulip, Max, MaddieTodd, SilverabladeTE, MaryB, WillowJ, JustinReilley, OverTheHills, Fla, Wildcat, Guido den Broeder, Ember.

    In the NotCrazy forum (Australia)
    Cath, Kate, Rich01, NL, Allyson.

    Technical support by Ash.

    I do have a sense that we are winning and we are all, all around the world, very grateful to WPI.

    Greg F
    Australia.

    PS The Vivint doubling period went in a few minutes at 4am our time. I don't think I could have helped there.


    From Andrea.
    Greg that is so kind of you. I'm going to give this to communications and donor relations and I'll let you know when we post. Thank you so much for your very generous contribution.

    And with Vikki we wouldn't have Count ME In. The support of the UK is so special to us. Thank you to CMI and causes :)


    From Annette.
    Thank you for your generous donation and kind support. With help from friends like yourself we will win this battle. I promise you that we won't give up searching until we find the answers.
    With warm regards
    Annette
     
  7. eric_s

    eric_s Senior Member

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    Switzerland/Spain (Valencia)
    Thanks, Greg
     

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