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Challenge the CDC Campaign email #2

Discussion in 'Action Alerts and Advocacy' started by The Phantom, Nov 23, 2010.

  1. The Phantom

    The Phantom Member

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    near Philadelphia
    We have heard nothing from the CDC about who will be appointed Chief, Chronic Viral Diseases Branch. The person in that position will be supervising the Chronic Fatigue Syndrome Translational Research Program at the CDC. Many emails were sent three to four weeks ago to Dr. Monroe expressing opposition to the appointment of Dr. Elizabeth Unger, who is the current Acting Chief. Dr. Monroe is making the decision about who will be appointed Chief. We pointed out that Dr. Unger has not communicated well with ME/CFS researchers and clinicians outside of the CDC. At the Chronic Fatigue Syndrome Advisory Committee (CFSAC, an advisory committee to the Secretary, Health and Human Services) she defended CDC research done using the empirical definition of CFS (Reeves, 2005). This definition has been shown to be too broad, including many people with other diagnoses. The CFSAC itself rejected the use of this definition at its meeting in October, 2009. Conclusions from research using this definition in the past year include: XMRV is not found in any CFS patients and CFS patients have a high incidence of personality disorders. In addition, during her term as Acting Chief, Dr. Unger has not improved the CDC website, which continues to have significant inaccuracies and omissions. She has not shown any willingness to alter the established policies that the CDC has followed for years in regard to ME/CFS. If she is appointed Chief, we can expect more of the same.

    The decision about who fills this position is likely to occur soon, perhaps within the next few days. Its time to restate our opposition to Dr. Unger. Please send a new email to Dr. Monroe, Dr. Frieden, Dr. Koh and Secretary Sebelius. A suggested text and all the contact information is listed below. If you want to reword it, add to it, send it to other people, please do. This is planned as a one-time email (again), but if you want to send several emails please do. If we hear nothing back again, we may send another email (or two) in December. If possible, please also send a copy to challengeCDCcampaign@gmail.com so we have some idea how many emails are sent. It doesnt matter if youve already sent one or if you havent. We need to emphasize how we feel about Unger and the past actions of the CDC.

    This is important. Thanks for helping all of us.


    Suggested text:

    Dear Dr. Monroe, Dr. Frieden, Dr. Koh and Secretary Sebelius,

    I am writing to express my opposition to the appointment of Dr. Elizabeth Unger as Chief, Viral Diseases Branch at the Centers for Disease Control. In this position, Dr. Unger will be supervising the Chronic Fatigue Syndrome Translational Research Program at the CDC. Dr. Unger has served as Acting Chief, Viral Diseases Branch for several months. During that time she has shown no understanding of the importance of improving the accuracy of the CDCs CFS website, which is referenced by physicians and patients all over the world. She has continued to allow research to be published using a definition of Chronic Fatigue Syndrome that was rejected by the Department of Health and Human Services own Chronic Fatigue Syndrome Advisory Committee (CFSAC) in October, 2009. She has failed to communicate or collaborate with CFS experts outside of the CDC. She has not established progressive leadership at the CDC that can achieve efficient, meaningful progress in CFS research, clinical care, and education, another CFSAC recommendation from October, 2009. She has not shown that she is qualified to be permanent Chief. I urge you to select another candidate to fill this important position.

    Sincerely,

    Name
    Patient for years
    City or Town, State or Country


    Suggested recipient email addresses:

    stephan.monroe@cdc.hhs.gov,txf2@cdc.gov,howard.koh@hhs.gov,kathleen.sebelius@hhs.gov

    Please send a copy to: challengecdccampaign@gmail.com



    Here is additional contact information if you want to call, fax or snail mail:

    Stephan S. Monroe, PhD
    Director, Division of Viral and Rickettsial Diseases
    Room NCEZID
    CLFT
    Atlanta, GA 30329-4018
    tel: 404-639-2391
    fax: 404-639-3163
    email: stephan.monroe@cdc.hhs.gov

    Thomas Frieden, MD, MPH
    Director, Centers for Disease Control and Prevention
    CLFT Building
    Room OCOO
    Atlanta, Ga 30329-4018
    tel: 404-639-7000
    fax. 404-639-7111
    email: txf2@cdc.gov

    Howard Koh, MD, MPH
    Assistant Secretary for Health, Department of Health and Human Services
    Room 7-716G
    200 Independence Ave., SW HHH B
    Washington, DC
    tel: 202-690-7794
    email: howard.koh@hhs.gov

    Kathleen Sebelius
    Secretary, Department of Health and Human Services
    Room 120F
    Washington D.C.
    200 Independence Ave. SW
    tel: 1-877-696-6775
    email: kathleen.sebelius@hhs.gov
     
  2. *GG*

    *GG* Senior Member

    Messages:
    6,167
    Likes:
    4,773
    Concord, NH
    As Jill McLaughlin posted earlier today, many of us remain concerned about leadership at the CDC. Our posts apparently crossed in the (e)mail. At the risk of seeming repetitive, the Challenge the CDC Campaign wants to make available a cut and paste message to send for those who don't have the energy to compose an email. Our hope is that this repetition will emphasize the importance of expressing our opinions about this important position. This is the original post from Challenge the CDC Campaign

    We have heard nothing from the CDC about who will be appointed Chief, Chronic Viral Diseases Branch. The person in that position will be supervising the Chronic Fatigue Syndrome Translational Research Program at the CDC. Many emails were sent three to four weeks ago to Dr. Monroe expressing opposition to the appointment of Dr. Elizabeth Unger, who is the current Acting Chief. Dr. Monroe is making the decision about who will be appointed Chief. We pointed out that Dr. Unger has not communicated well with ME/CFS researchers and clinicians outside of the CDC. At the Chronic Fatigue Syndrome Advisory Committee (CFSAC, an advisory committee to the Secretary, Health and Human Services) she defended CDC research done using the "empirical" definition of CFS (Reeves, 2005). This definition has been shown to be too broad, including many people with other diagnoses. The CFSAC itself rejected the use of this definition at its meeting in October, 2009. Conclusions from research using this definition in the past year include: XMRV is not found in any "CFS" patients and "CFS" patients have a high incidence of personality disorders. In addition, during her term as Acting Chief, Dr. Unger has not improved the CDC website, which continues to have significant inaccuracies and omissions. She has not shown any willingness to alter the established policies that the CDC has followed for years in regard to ME/CFS. If she is appointed Chief, we can expect more of the same.

    The decision about who fills this position is likely to occur soon, perhaps within the next few days. It's time to restate our opposition to Dr. Unger. Please send a new email to Dr. Monroe, Dr. Frieden, Dr. Koh and Secretary Sebelius. A suggested text and all the contact information is listed below. If you want to reword it, add to it, send it to other people, please do. This is planned as a one-time email (again), but if you want to send several emails please do. If we hear nothing back again, we may send another email (or two) in December. If possible, please also send a copy to
    <mailto:challengeCDCcampaign@gmail.com>challengeCDCcampaign@gmail.com so we have some idea how many emails are sent. It doesn't matter if you've already sent one or if you haven't. We need to emphasize how we feel about Dr. Unger and the past actions of the CDC.

    This is important. Thanks for helping all of us.

    Suggested text:

    Dear Dr. Monroe, Dr. Frieden, Dr. Koh and Secretary Sebelius,

    I am writing to express my opposition to the appointment of Dr. Elizabeth Unger as Chief, Viral Diseases Branch at the Centers for Disease Control. In this position, Dr. Unger will be supervising the Chronic Fatigue Syndrome Translational Research Program at the CDC. Dr. Unger has served as Acting Chief, Viral Diseases Branch for several months. During that time she has shown no understanding of the importance of improving the accuracy of the CDC's CFS website, which is referenced by physicians and patients all over the world. She has continued to allow research to be published using a definition of Chronic Fatigue Syndrome that was rejected by the Department of Health and Human Services' own Chronic Fatigue Syndrome Advisory Committee (CFSAC) in October, 2009. She has failed to communicate or collaborate with CFS experts outside of the CDC. She has not established "progressive leadership at the CDC that can achieve efficient, meaningful progress in CFS research, clinical care, and education," another CFSAC recommendation from October, 2009. She has not shown that she is qualified to be permanent Chief. I urge you to select another candidate to fill this important position.

    Sincerely,

    Name
    Patient for years
    City or Town, State or Country

    Suggested recipient email addresses:

    <mailto:stephan.monroe@cdc.hhs.gov>stephan.monroe@cdc.hhs.gov,<mailto:txf2@cdc.gov>txf2@cdc.gov,<mailto:howard.koh@hhs.gov>howard.koh@hhs.gov,<mailto:kathleen.sebelius@hhs.gov>kathleen.sebelius@hhs.gov

    Please send a copy to: <mailto:challengecdccampaign@gmail.com>challengecdccampaign@gmail.com

    Here is additional contact information if you want to call, fax or snail mail:

    Stephan S. Monroe, PhD
    Director, Division of Viral and Rickettsial Diseases
    Room NCEZID
    CLFT
    Atlanta, GA 30329-4018
    tel: 404-639-2391
    fax: 404-639-3163
    email: <mailto:stephan.monroe@cdc.hhs.gov>stephan.monroe@cdc.hhs.gov

    Thomas Frieden, MD, MPH
    Director, Centers for Disease Control and Prevention
    CLFT Building
    Room OCOO
    Atlanta, Ga 30329-4018
    tel: 404-639-7000
    fax. 404-639-7111
    email: <mailto:txf2@cdc.gov>txf2@cdc.gov

    Howard Koh, MD, MPH
    Assistant Secretary for Health, Department of Health and Human Services
    Room 7-716G
    200 Independence Ave., SW HHH B
    Washington, DC
    tel: 202-690-7794
    email: <mailto:howard.koh@hhs.gov>howard.koh@hhs.gov

    Kathleen Sebelius
    Secretary, Department of Health and Human Services
    Room 120F
    Washington D.C.
    200 Independence Ave. SW
    tel: 1-877-696-6775
    email: <mailto:kathleen.sebelius@hhs.gov>kathleen.sebelius@hhs.gov
     
  3. *GG*

    *GG* Senior Member

    Messages:
    6,167
    Likes:
    4,773
    Concord, NH
  4. George

    George waitin' fer rabbits

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    80
    South Texas
    Sounds good. I think I'll send one per week. Is that o. K. ?
     
  5. *GG*

    *GG* Senior Member

    Messages:
    6,167
    Likes:
    4,773
    Concord, NH
    Not sure George. I just realized this is a duplicate thread, please merge/delete. Sorry for the confusion!
     
  6. The Phantom

    The Phantom Member

    Messages:
    70
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    near Philadelphia
    I just noticed that the all the suggested email addresses didn't get posted. I'm not sure why this happened. Sometimes computers think they know more than humans do and apparently do their own editing. I hate it when that happens!

    So here's the list of email addresses:
    stephan.monroe@cdc.hhs.gov
    txf2@cdc.gov
    howard.koh@hhs.gov
    kathleen.sebelius@hhs.gov

    Sorry about that. And yes, there's a duplicate thread of this message. No problem--the more the merrier! To merge or not merge? That is the question for the moderators.

    As to frequency of emails. Weekly sounds good to me. I think everyone should do what they want and what they're able to do. If we don't hear any announcement there will be an email #3 posted in mid December and then possibly an email #4 between Christmas and New Year's, if necessary. Word is that the decision will be made "by the holidays".
     
  7. The Phantom

    The Phantom Member

    Messages:
    70
    Likes:
    0
    near Philadelphia
    Thanks, ggingues. I didn't realize that the automatic formatting makes some of the addresses disappear. Computers--don't you just love em? I just added the email list to the other thread, and, yes, there are two threads. Seems like they could be merged, but maybe having two of them makes this look more important, which it is!

    By the way, copies to: challengeCDCcampaign@gmail.com

    As far as frequency of emails, as the Co-Cure post said, everyone should feel free to do it as often as they want. The rumor is that the decision will be made "by the holidays", which holiday unspecified. If there is no announcement an email #3 will be posted in mid-December and an email #4, if necessary, between Christmas and New Year's, just as a reminder to everyone that we need to keep after the CDC to find someone who is not a co-author of the empiric definition to fill this position.
     

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