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Email addresses for nih dir, fda comm, and cdc dir - email them now on xmrv

Discussion in 'Action Alerts and Advocacy' started by muffin, Jun 30, 2010.

  1. muffin

    muffin Senior Member

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    1) National Institutes of Health (NIH)
    Dr. Francis S. Collins, NIH Director francis.collins@nih.gov 301-496-2433

    2) OFFICE OF THE COMMISSIONER, COMMISSIONER OF FOOD AND DRUGS (FDA)
    Margaret A. Hamburg, M.D. (Commissioner of Food and Drugs) margaret.hamburg@fda.hhs.gov

    3) Centers for Disease Control and Prevention (CDC) http://www.cdc.gov/
    Thomas R. Frieden, MD, MPH ftdh@cdc.gov
    Director, Centers for Disease Control and Prevention
    Administrator, Agency for Toxic Substances and Disease Registry
     
  2. judderwocky

    judderwocky Senior Member

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    SIGN THIS PETITION:
    http://healthcare.change.org/petitions/view/xmrv_allow_science_to_progress
     
  3. judderwocky

    judderwocky Senior Member

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  4. glenp

    glenp "and this too shall pass"

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    I sent a very simple letter to all those 3-- thankyou for posting muffin

    Dear Dr Freden



    I recently wrote asking asking when results of the XMRV testing would be released. Why is it not being released? Why is Dr. Alters study not being publshed? Why was the dutch study published even though xmrv was found by wpi in their negative samples? Why is this all "closed door" we as taxpayers have the right to know. We the taxpayers are paying.



    Would you please answer my questions



    Thank-you
     
  5. dsdmom

    dsdmom Senior Member

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    Does anybody have a contact (other than wanda jones, who I already sent an email to) at the HHS? I think we should contact (or bombard, as the case may be) them to find out why they are suppressing these other papers.
     
  6. dsdmom

    dsdmom Senior Member

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    I emailed Dr Collins and Dr Hamburg - but out of curiosity, what are others saying in an email to the CDC? I don't have anything to say to them - I am not in the mood to push them to publish a negative study and I'm not sure that (this time) they are behind trying to hold back the other study from coming out.
     
  7. judderwocky

    judderwocky Senior Member

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    If you can find the contact info for them... ill plug it into the petition, so they will get the messages as well
     
  8. Hope123

    Hope123 Senior Member

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    Write Dr. Koh

    Dr. Howard Koh attended the CFSAC meeting in May as a representative of DHHS (he is an Assistant Secretary) and appeared to be open to working with the CFS community. Well, here's his chance to shine! I think oftentimes, it's about reaching the right person. Write him about DHHS suppression of publication of the CDC and FDA/NIH XMRV studies.

    Here is his contact info - although it says Harvard, the contact info leads to his secretary at DHHS so it's not as though he would be bombarded personally if we wrote:

    http://www.hsph.harvard.edu/faculty/howard-koh/

    Dr. Koh at CFSAC: (1 part of 3)
    http://www.youtube.com/watch?v=0USH...A7ECD72CD&playnext_from=PL&playnext=1&index=1
     
  9. Otis

    Otis Señor Mumbler

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    USA
    Has anyone found contacts at DHHS? At this point this goes at least that high.
     
  10. judderwocky

    judderwocky Senior Member

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    added him in
     
  11. muffin

    muffin Senior Member

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    1) National Institutes of Health (NIH)
    Dr. Francis S. Collins, NIH Director francis.collins@nih.gov 301-496-2433

    2) OFFICE OF THE COMMISSIONER, COMMISSIONER OF FOOD AND DRUGS (FDA)
    Margaret A. Hamburg, M.D. (Commissioner of Food and Drugs) margaret.hamburg@fda.hhs.gov

    3) Centers for Disease Control and Prevention (CDC) http://www.cdc.gov/
    Thomas R. Frieden, MD, MPH ftdh@cdc.gov
    Director, Centers for Disease Control and Prevention
    Administrator, Agency for Toxic Substances and Disease Registry

    SIGN THIS PETITION:
    http://healthcare.change.org/petitio...ce_to_progress
     
  12. Rrrr

    Rrrr Senior Member

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    thank you, muffin. i emailed all of them!
     
  13. muffin

    muffin Senior Member

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    BIG HUGS Rrrr!!!

    I think emailing Sebelius is the big one now. Inundate her so she knows we are watching and so are the journalists and others.
     
  14. glenp

    glenp "and this too shall pass"

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    ty muffin I emailed them again - the link for the cdc email is not correct

    I did short and simple

    Hello



    Would you please tell me how I might go about in helping to have the XMRV possitive study by Alter, published. I believe that the public has a right to know



    Thank you
     
  15. judderwocky

    judderwocky Senior Member

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    Just want to let everyone know that every time someone signs the petition it goes out to all three of those offices... and the PNAS office... and the whitehouse... and the individuals reps and senators.

    we're up to 358

    :)
     
  16. muffin

    muffin Senior Member

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    Judder - YOU are the Man!!!!

    What a great idea, as I have kept saying over and over to you. Thank you.

    I think you will hit the 500 mark and blow past it soon. Did we post it on Prohealth and the other CFIDS sites? Think I may link it to TOPIX so that it shows up in Google Alerts, etc.

    Why do we need the CAA when we have smart folks like you????

    Big hugs - Muffin
     
  17. citybug

    citybug Senior Member

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    NY
    Kathleen Sebelius
    Secretary HHS
    Room 120F

    Internet e-mail Kathleen.Sebelius@hhs.gov

    DHHS
    Phone..........: 1-866-699-4872
    Postal address.: 200 Independence Ave. S.W. Washington, D.C. 20201

    Web site.......: http://www.hhs.gov/
    Keywords.......: health;welfare;grants;medicare;medicaid

    Mission
    The Department of Health and Human Services is the United States government's principal agency for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves.

    President Obama's Science Advisor, John Holdren, at AskDrH@ostp.gov

    We should also demand the CDC stop spending CFS research dollars on their "revised" definition of CFS.


    Here is Collins address too

    Dr Francis Collins
    E-mail: francis.collins@nih.gov
    Location:

    Building 1 - Shannon Building, 126
    1 Center Dr
    Bethesda, MD 20892

    Phone: 301-496-2433
     
  18. citybug

    citybug Senior Member

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    Write to US Congress for Mandated funds for XMRV and CFS Research

    It's not getting done by the CDC lets ask for Congressionally Mandated Research Funds. They have patient advocates on the review boards.

    From Nancy Klimas http://aboutmecfs.org/Rsrch/XMRVKlimasII.aspx
    You go to Congress, they can actually put aside money and there is one really important tool they have. There is something called the Office of Congressionally Mandated Research. This is an Army office. It comes out of the DOD budget, a very healthy budget one might say. The Office of Congressionally Mandated Research and that is absolutely the place where advocacy can put real committed dollars to an illness.

    In fact my research right now is funded through the DOD (Department of Defense), Gulf War Illness, through the Office of Congressionally Mandated Research. They are wonderful people, they are very professional, they know how to do peer review properly, they know how to get money into the hands of people who will really spent it in a and boy do they watch how you spend it.

    http://cdmrp.army.mil/about/fundingprocess.shtml
    Funding Process

    The Office of Congressionally Directed Medical Research Programs (CDMRP) is funded through the Department of Defense (DoD), via annual Congressional legislation known as the Defense Appropriations Act. For most programs, the DoD sends a multi-year budget request to Congress in the form of the President's Budget. However, dollars for the CDMRP are not considered part of the DoD's core mission, and are therefore not included in the DoD's requested budget. Rather, the dollars to fund CDMRP are added every year during the budget approval cycle by members of the House or Senate, in response to requests by consumer advocates and disease survivors.

    For more information, contact the CDMRP staff, or see the FAQs on this website.
    http://cdmrp.army.mil/cwg/faq.shtml#1
    # Why is the Department of Defense involved in funding this kind of research?

    In 1992, a highly visible lobbying campaign by grassroots advocacy organizations, primarily the National Breast Cancer Coalition, increased awareness among policymakers of the need to expand funding for breast cancer research. These consumer groups emphasized the need to fund research in ways that were different from those employed by traditional medical research organizations such as the National Institutes of Health. In response, the United States Congress allocated specific funds for breast cancer research in the Department of Defense appropriations budget. The Department of Defense was chosen because of its long history in performing medical research studies and because its administrative structure was designed for flexible and quick responses to changing needs and priorities. The success of this effort has resulted in an increase in the number of disease research programs for which Congress has mandated funding through the Department of Defense. As of 2009, many new programs have been added to CDMRP�s portfolio and include Peer Reviewed Cancer, Orthopedic, Spinal Cord and Lung Cancer.
     
  19. citybug

    citybug Senior Member

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    bumping these addresses up.
     

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