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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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EMAIL THE HEAD OF THE CDC: Dr. Thomas R. Frieden - EMAIL ADDRESS IN POST

Discussion in 'Action Alerts and Advocacy' started by muffin, Jun 5, 2010.

  1. muffin

    muffin Senior Member

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    Thanks for emailing him.

    KEEP EMAILING WITH GOOD INFO! We need to make sure that Frieden is most aware of the major issue with CDC's CFS program and the possible (probable) massive boulder that will fall on the CDC when the XMRV replication study hits - regardless of its outcome.

    The CDC ignored two other Retroviruses when they finally dealt with HIV/AIDS. But they play games with other stupid viruses that don't even compete with the seasonal viruses. Enough of the games and marketing ploys. Time for the CDC to deal with a real epidemic. So scream and keep screaming.
     
  2. JillBohr

    JillBohr Senior Member

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    Thank you muffin. I have not heard back yet but I will post when I do. You are so cute btw.
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I did not post this idea, but I did voice my support. I think it's a great idea.
     
  4. glenp

    glenp "and this too shall pass"

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    Vancouver Canada suburbs
    TY Muffin

    It sure helpos to have the click on addy or I write the letter and somehow don't get the addy.

    I am in Canada but sent it anyway and sent from the "male" name!!!!! I will post here if I hear back and find this thread again!

    glen
     
  5. muffin

    muffin Senior Member

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    Glenp: Men do need to complain as they too are as badly affected as women are. Men are also horribly neglected and demeaned possibly even more than women are with this disease. I also think the real numbers of men with CFIDS is woefully low. Horribly under-reported and under-treated. Look at my poor husband. Diagnosed with "burn out" - not the CFIDS that the whole range of his symptoms strongly suggested. But burn out. Give me a break.....
     
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Imo there are other points that are more important to make than that men are affected. I think that the fact that this disease strikes women disproportionately has contributed substantially to our maltreatment because of sexist attitudes of the usual suspects. On the other hand now I think we can use the 'oppressed women' card to get more funding as CAA is doing in the Women's Pain campaign, which I support. Look at the disproportionately, imo, high funding and awareness breast cancer gets because it is a women's disease.

    Just my opinions; I do of course support accurate information being disseminated so more power to you if you feel this should be publicised. And thanks for your advocacy efforts in general!
     

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