Monday, November 22, 2010

Challenge the CDC campaign email #2

The following is a very important announcement by an anonymous contributor. The Patient Advocate recommends that the reader respond to this request as quickly and as forcefully as possible as this is a matter of the utmost urgency.

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 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 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:

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

4 comments:

  1. Done! I am a Canadian and added this:

    The CDC has an international profile and influences attitudes and decisions regarding disease management strategies globally. ME/cfs Patients around the world have a stake in this matter. The world urges you to make a wise decision regarding how the CDC manages this unfolding crisis.

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  2. Done as well. Thanks PA for making it easy. And thanks Honora for the international addition.

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  3. Done. Completely agree with Leela. Thanks

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  4. Done and added the statement from Honora for Canadians. Many thanks, Lynn

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