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PLEASE SIGN: The Petition to Disassociate from the CAA As Our Advocacy Rep

Discussion in 'Action Alerts and Advocacy' started by Dreambirdie, Feb 28, 2011.

  1. Dreambirdie

    Dreambirdie work in progress

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  2. leaves

    leaves Senior Member

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    Although im for disassociating from the caa, I won't sign the petition. I agree with Andrew that this petition may do more harm than good, we should really try to specify an alternative organization.
     
  3. Dreambirdie

    Dreambirdie work in progress

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    I think we should do both. CFS Central and WPI are my first choices of alternatives.
     
  4. Hope123

    Hope123 Senior Member

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    IMO, neither CFS Central nor WPI are good choices -- I'm thinking more of the MCWPA (I have no affiliation with them other than as an interested patient atm).

    Mindy K. is a journalist and although she has written some good pieces (which she labelled as editorials) , she might prefer to keep a neutral stance overall besides which it takes more than one person to be an effective patient advocacy org.

    The WPI, despite its occasional wadings into advocacy, is also inappropriate because it is primarily a research org and I would like it to stay that way. Funding agencies might not think that an institute which also advocates will be objective enough when it comes to the science. OTOH, if WPI wants to establish an advocacy arm separate from the research arm, this might be possible although I still don't know how they would be viewed. I also want them to concentrate on the research rather than advocacy.
     
  5. Dreambirdie

    Dreambirdie work in progress

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    WPI has a press room and a media coordinator. http://www.wpinstitute.org/news/news_cmmpress.html
    They could easily step up to the plate to do some advocacy, when necessary.

    And Mindy is hardly neutral... which in this situation, is a good thing.

    I'm also fine with MCWPA. It's good to have a bunch of options to consider, when bringing these issues to the media and responding to what they put out.
     
  6. Dreambirdie

    Dreambirdie work in progress

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    233 SIGNATURES as of 2:50 on March 1, 2011.

    The goal is to get 767 more. Hello out there!....
     
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    fwiw, i don't think it would cause us problems to say we don't like CAA. If we don't turn up the pressure and redirect attention with one of the few ways we can they are just going to keep going on like they have been for the last 20 years.

    It's definitely good to recommend someone else to speak. I think MCWPA, WPI, Mindy and Hillary are great choices.
     
  8. Dreambirdie

    Dreambirdie work in progress

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    260 signatures and counting...
     
  9. leaves

    leaves Senior Member

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    I think it would be great if Mindy could be the spokesperson of a new me organization
     
  10. Dreambirdie

    Dreambirdie work in progress

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    I would vote for that. The time is ripe for change. :peach:
     
  11. Dreambirdie

    Dreambirdie work in progress

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    280 signatures as of 2:30 pm 3/3/11

    Please, let's keep them coming!
     
  12. Dreambirdie

    Dreambirdie work in progress

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    Just to bump this up... ONLY 285 sigs since yesterday...

    Hello out there! I think we can do better than that!
     
  13. Dreambirdie

    Dreambirdie work in progress

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    We are currently at 296 signatures... just 4 away from 300.

    Yahooo-eee!
     
  14. taniaaust1

    taniaaust1 Senior Member

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    I think getting a research org eg WPI messed up with advocacy (even if they were willing) would end up making any future research coming out of them.. be seen not as strongly by the over all research community. Everyone (non CFS/ME community will be screaming bias research instead of taking things seriously.

    I really hope WPI stays focused on the very important research!
     
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    305. Good, but I know there are some more dissatisfied customers out there. Come on and sign the petition.
     
  16. Dreambirdie

    Dreambirdie work in progress

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    It's a day later and 2 more people have signed. TOTAL this morning: 307

    We need 693 more!
     
  17. Dreambirdie

    Dreambirdie work in progress

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    I have passed the petition along (through a source back east) to the Massachusetts CFIDS/ME FM Association, and to Rik Carlson, of the Vermont CFIDS Association.

    Please keep the signatures coming!
     
  18. Dreambirdie

    Dreambirdie work in progress

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    332 Signatures as of this morning 3/10 at 7:30!

    It sure is nice to be getting some help with this... :rolleyes:
     
  19. mezombie

    mezombie Senior Member

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    East Coast city, USA
  20. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon

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