Tell CDC to Change their ME/CFS Research

Tell CDC to Change their ME/CFS Research

The Issue

A new chief of the Viral Diseases Branch of the Centers for Disease Control and Prevention provides an opportunity for that government agency to change the direction of ME/CFS research. Yet, they need to know what changes are needed. On Dec. 6, PANDORA sent a letter to Dr. Elizabeth Unger who is now heading up ME/CFS research for the CDC. The letter contains solid and strong recommendations that are based in a consensus of patient organizations, experts in the field of ME/CFS and advocates.  Also, at the CDC Stakeholder's meeting on April 2009, these same solid and strong recommendations were made.

This letter included the signatures of ten other patient organizations:

The Vermont CFIDS Association, Inc.

CFS Knowledge Center

Rocky Mountain CFS/ME & FM Association

Massachusetts CFIDS/ME & FM Association

Mothers Against Myalgic Encephalomyelitis

CFS/FMS Organization of Georgia, Inc.

CFS Solutions of West Michigan

Wisconsin ME/CFS Association, Inc.

Medical Professionals with ME

The Connecticut CFIDS & FM Association, Inc.


It also included the signatures from noted patient advocates, such as Robert Miller, Heidi Bauer, Jill Justiss and Jim, Billie and Eric Moore.

Now it is your turn. If you agree that the CDC needs to make the changes listed in the letter, sign this petition. Each signature results in an e-mail being sent to Dr. Unger’s bosses, urging them to direct her to implement the changes:

Stephan Monroe, Ph.D., Director of the Division of High Consequence Pathogens and Pathology

Beth Bell, M.D., M.P.H., Director of the National Center for Emerging Zoonotic Infectious Diseases

Rima Khabbaz, M.D., Deputy Director for Infectious Diseases

Ileana Arias, Ph.D., Principal Deputy Director for the CDC

Thomas Frieden, M.D., M.P.H., Director for the Centers for Disease Control and Prevention


Also, an e-mail will be sent to:

Dinah Bembo, Assistant to the Assistant Secretary of Health

 

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PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADVPetition Starter
Media inquiries
Confirmed victory
This petition made change with 1,218 supporters!

The Issue

A new chief of the Viral Diseases Branch of the Centers for Disease Control and Prevention provides an opportunity for that government agency to change the direction of ME/CFS research. Yet, they need to know what changes are needed. On Dec. 6, PANDORA sent a letter to Dr. Elizabeth Unger who is now heading up ME/CFS research for the CDC. The letter contains solid and strong recommendations that are based in a consensus of patient organizations, experts in the field of ME/CFS and advocates.  Also, at the CDC Stakeholder's meeting on April 2009, these same solid and strong recommendations were made.

This letter included the signatures of ten other patient organizations:

The Vermont CFIDS Association, Inc.

CFS Knowledge Center

Rocky Mountain CFS/ME & FM Association

Massachusetts CFIDS/ME & FM Association

Mothers Against Myalgic Encephalomyelitis

CFS/FMS Organization of Georgia, Inc.

CFS Solutions of West Michigan

Wisconsin ME/CFS Association, Inc.

Medical Professionals with ME

The Connecticut CFIDS & FM Association, Inc.


It also included the signatures from noted patient advocates, such as Robert Miller, Heidi Bauer, Jill Justiss and Jim, Billie and Eric Moore.

Now it is your turn. If you agree that the CDC needs to make the changes listed in the letter, sign this petition. Each signature results in an e-mail being sent to Dr. Unger’s bosses, urging them to direct her to implement the changes:

Stephan Monroe, Ph.D., Director of the Division of High Consequence Pathogens and Pathology

Beth Bell, M.D., M.P.H., Director of the National Center for Emerging Zoonotic Infectious Diseases

Rima Khabbaz, M.D., Deputy Director for Infectious Diseases

Ileana Arias, Ph.D., Principal Deputy Director for the CDC

Thomas Frieden, M.D., M.P.H., Director for the Centers for Disease Control and Prevention


Also, an e-mail will be sent to:

Dinah Bembo, Assistant to the Assistant Secretary of Health

 

avatar of the starter
PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADVPetition Starter
Media inquiries

Confirmed victory

This petition made change with 1,218 supporters!

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The Decision Makers

  • Thomas Frieden, M.D., M.P.H.

    Director for the Centers for Disease Control and Prevention

    No response

  • Thomas Frieden, M.D., M.P.H. (2)

    Director for the Centers for Disease Control and Prevention (2)

    No response

  • Stephan Monroe, Ph.D.

    Director of the Division of High Consequence Pathogens and Pathology

    No response

The Supporters

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Petition created on January 24, 2011