Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Challenge the CDC Campaign

Discussion in 'Action Alerts and Advocacy' started by The Phantom, Oct 31, 2010.

  1. The Phantom

    The Phantom Member

    near Philadelphia
    A new email campaign has begun. The purpose of this campaign is to express our opinions about the permanent Chief, Chronic Viral Diseases Branch at the CDC (Reeves' old position). Dr. Elizabeth Unger has been Acting Chief since Reeves left. As we saw at the CFSAC meeting earlier this month, Unger is very much in the Reeves mold. She defended a recently published study on personality disorders in people meeting the empiric definition of CFS (Reeves 2005), essentially saying that the CDC always does high quality research, therefore this study is good. Although she said the empiric definition would be revisited at some point, she did not express any particular concerns about it. According to Dr. Fred Friedberg, President of the IACFS/ME, she has failed to respond to emails from ME/CFS researchers and clinicians outside the CDC. He has asked IACFS/ME members to "write a brief note to Stephan Monroe expressing your strong dissatisfaction with the current leadership of the CFS program and urge Dr. Monroe to select a new Chief, Chronic Viral Diseases Branch with strong leadership skills who constructively engages with the scientific and professional communities." The full text of his letter is here:

    The Challenge the CDC Campaign is a parallel email campaign for the patient community. Because we don't have to maintain a professional stance, we can be more specific. We know there are other candidates besides Unger for the position, but we don't know how many or who they are. Therefore, we can't advocate for a better candidate, but we can advocate against Unger, who we know will not be a good Chief. We're sending the emails to Dr. Stephan Monroe at the CDC, who will be making the hiring decision; Dr. Thomas Frieden, Director of the CDC; Dr. Howard Koh, Assistant Secretary of Health (with responsibility for ME/CFS); and to Secretary Kathleen Sebelius, Secretary of the Department of Health and Human Services.

    Of course, everybody should feel free to add to or alter the message as they see fit. Keep in mind that these government officials are busy and they are working on our dime. It's best to be as brief as possible.

    Please send a copy of your message to: so we can have some idea how many are sent.

    This is the message:

    Dr. Elizabeth Unger is not qualified to be Chief of the Chronic Viral Diseases Branch at the CDC. At the recent Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting she continued to defend research done on a group of patients defined by the "empiric" (Reeves, 2005) definition of CFS, a definition that the DHHS CFS Advisory Committee recommended be abandoned in 2009. In addition, she has been unresponsive to communications from ME/CFS researchers and clinicians outside the CDC. As Acting Chief she has not demonstrated the skills necessary to advance the CDC's mission as it relates to ME/CFS. The CDC research program for CFS needs new ideas and new leadership. Dr. Unger has shown that she is not up to the task. She should not be appointed permanent Chief.

    These are the email addresses:

    If you would prefer to phone, fax or mail letters, here is more contact information:

    Stephan S. Monroe, PhD
    Director, Division of Viral and Rickettsial Diseases
    Room NCEZID
    Atlanta, GA 30329-4018
    tel: 404-639-2391
    fax: 404-639-3163

    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

    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

    Kathleen Sebelius
    Secretary, Department of Health and Human Services
    Room 120F
    Washington D.C.
    200 Independence Ave. SW
    tel: 1-877-696-6775

    Thanks to everyone who takes the time to challenge the CDC to improve their response to ME/CFS. This is a group effort to make our voices heard about who fills a government position that affects all of us.
  2. The Phantom

    The Phantom Member

    near Philadelphia
    Additional letters submitted to the Challenge the CDC Campaign

    Many people are writing very good letters that either add to or replace the message in the previous post. Please, if you want to post them in this thread, do so. It may provide inspiration to someone else!

    Also, many thanks to those who participated in the UK demonstration today about the beginning of the XMRV blood donation ban. :victory::victory::victory::victory::victory:
  3. Dolphin

    Dolphin Senior Member


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