Apologize for not Responding Appropriately to the ME/CFS Epidemic
  • Petitioning Susan Maier

This petition will be delivered to:

Chair, Trans-NIH ME/CFS Research Working Group
Susan Maier
Chief, CDC CFS program
Elizabeth Unger
Director, National Institute of Allergy and Infectious Disease
Anthony Fauci
NIH ORWH Director
Janine Clayton
NIH Director
Francis Collins
Assistant Secretary for Health
Howard Koh
US Secretary for Health & Human Services
Kathleen Sebelius
Director, CDC
Thomas Frieden

Apologize for not Responding Appropriately to the ME/CFS Epidemic

    1. Liz Willow
    2. Petition by

      Liz Willow

      Camden, ME

Bjørn Guldvog, Deputy Director General of the Norwegian Directorate of Health, recently made the following statement in response to a published study indicating the cancer drug Rituximab may be an effective treatment for ME:  "I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."

Other nations need to follow Norways's example.

Along with an apology, we ask the US to:

1. Double the current NIH funding for extramural research annually until it achieves parity with funding for similarly debilitating chronic diseases like Multiple Sclerosis. Priority should be given to research on biomarkers and potential pathogens as well as clinical trials. 

2. Take down information on the CDC's CFS website stating testing for pathogens and biomarkers is "experimental and theoretical" and that GET and CBT are appropriate treatments.

Recent signatures

    News

    1. Reached 750 signatures
    2. CDC's website no longer refers to any tests as experimental or theoretical!

      Liz Willow
      Petition Organizer

      This means health providers won't be officially discouraged from ordering tests for immune system dysfunction, reactivated infections, and other potential biomarkers. It also means insurance companies cannot rely on the CDC's advice should they attempt to deny reimbursement for such testing.

    3. Reached 500 signatures

    Supporters

    Reasons for signing

    • Kerrie Cook AUSTRALIA
      • 4 months ago

      Have had the run around and no real help from medical people - get it right - we need answers to this attact on our immunity and our well being as well as an active involved life. It is not depression: it is physical not "all in the head" although we are learning that ME is an inflamation in the brain - (so in that way only is it all "in the head". Please help us find a way to beat this didease and be involved and active without pain - please.

      REPORT THIS COMMENT:
    • Suzanne Shapcott-Hall LINCOLN, UNITED KINGDOM
      • 6 months ago

      My daughter is diagnosed with CFS/ME

      REPORT THIS COMMENT:
    • Colleen Steckel SPRINGFIELD, OH
      • 8 months ago

      This illness has affected me directly for 24 years and I still remember how money that was supposed to be spent to help ME/CFS patients was siphoned off to other projects. If that had not happened we'd be years closer to a cure!

      REPORT THIS COMMENT:
    • Suzy Parkerson GOOSE CREEK, SC
      • 8 months ago

      I have FMS/ME/CFS and know so many folks who also have these horrid symptoms and do not know where to turn. I am one of the forunate ones who have received a dianosis and have been approved for SSD. There is obviously an epidemic. WHY, I wonder? We need to be tested for bio-markers and not just for "depression", "hysteria", etc.. I was a happy, hard-working individual before this illness struck me dead in my tracks. I again am one of the fortunate folks ~ I remain happy and know I must do my part to help get this information out there and demand respect and attention to the debilitating medical issues we must deal with daily!! Please help!! Thanks!!

      REPORT THIS COMMENT:
    • Karen Burroughs ORLANDO, FL
      • 8 months ago

      As a 18 year sufferer, I would NEVER have imagined all those years ago, that we would be ignored so very long.

      REPORT THIS COMMENT:

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