• Petitioned Thomas Frieden, M.D., M.P.H.

This petition was delivered to:

Director for the Centers for Disease Control and Prevention
Thomas Frieden, M.D., M.P.H.
Director for the Centers for Disease Control and Prevention (2)
Thomas Frieden, M.D., M.P.H. (2)
Director of the Division of High Consequence Pathogens and Pathology
Stephan Monroe, Ph.D.
Director of the National Center for Emerging Zoonotic Infectious Diseases
Beth Bell, M.D., M.P.H.
Deputy Director for Infectious Diseases
Rima Khabbaz, M.D.
Principal Deputy Director for the CDC
Ileana Arias, Ph.D.

Tell CDC to Change their ME/CFS Research

    1. Petition by

      PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV

  1.  
  2.   
July 2012

Victory

This petition has accomplished 5 of the 10 items listed on the petition, including a face-to-face meeting with Dr. Beth Unger from the CDC CFS program with at least 10 organizations from within our overall community and a few individual advocates. But more needs to be accomplished and perhaps a revision of the petition might have to be done due to the ongoing conversations with the CDC.

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

 

Recent signatures

    News

    1. Reached 1,000 signatures

    Supporters

    Reasons for signing

    • Matina Nicholson WILMINGTON, DE
      • over 1 year ago

      I support this because I have ME and this organization is AWESOME!

      REPORT THIS COMMENT:
    • Matina Nicholson WILMINGTON, DE
      • over 1 year ago

      Because I have ME/CFS for over 6 years and I am bedridden 80% of the time. Many people (children, teens, adults) have been suffering for over 25 years. This disease is NOT FATIGUE! It is a complex and debilitating chronic illness that affects the brain and multiple body systems. Due to the case definition (Fukuda) on the CDC website, it has greatly harmed the ME/CFS community. This definition is too broad and doesn't capture the true nature of this disease. Hence, research with this definition will not provide accurate research outcomes. The CDC has caused great harm to us and has deter diagnosis and interest from media, medical and private sectors. This is the biggest medical stigma ever that the US has seen. It is time to listen to patient and medical experts who treat MANY patients with this disease. If not, we will suffer greatly for more years to come. Please partner with Medical Experts and Patients Immediately. It is are only hope for better research and cure!

      REPORT THIS COMMENT:
    • gaston gingues HAMPTON, NH
      • over 1 year ago

      Because Drs and agencies look to the CDC for guidance!

      REPORT THIS COMMENT:
      • almost 2 years ago

      Allied NATO Government is hiding millions of NON HIV AIDS cases (like mine) under the "Chronic Fatigue Syndrome (CFS)" ICD-code.

      UK PROGRESSIVE published one of my letters about NON HIV AIDS.

      This marked it’s 8th publication on 4 continents.

      This topic has been censored from mainstream media since 1992.

      www.ukprogressive.co.uk/the-aids-like-disease-seldom-mentioned/article20891.html

      I hope that you will support this humanitarian issue, and spread-the-news too (e.g., write a story, add to your e*Newsletter and/or post on Facebook/Twitter).

      In the fight for humanity,

      k

      Or just google "NON HIV AIDS"

      REPORT THIS COMMENT:
    • Donna Richburg WETUMPKA, AL
      • almost 2 years ago

      I have CFS/Me and it has completely turned my life upside down. I am housebound. I once was a good mother to my 4 year old son and I once was a successful lawyer.

      REPORT THIS COMMENT:

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