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Simplified instructions for e-mailing President Obama to stop the IOM contract

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Oct 21, 2013.

  1. Nielk

    Nielk

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    Queens, NY
    Simplified instructions for e-mailing President Obama and Vice President Biden


    Go to : http://www.whitehouse.gov/contact/submit-questions-and-comments

    Fill out your name and postal code

    For subject, pick 'Health and Human Services'

    For comment, just copy and paste the following comment below.




    Please order HHS to adopt the Canadian Consensus Criteria and cancel its contract with the Institute of Medicine (IOM) to redefine ME/CFS

    On September 23, thirty-five of the leading ME/CFS researchers and clinicians wrote to HHS Secretary Kathleen Sebelius calling for the Canadian Consensus Criteria (CCC) to be used as the sole case definition for ME/CFS. These experts also urged HHS to abandon its plans to contract with the Institute of Medicine (IOM) to use non-experts to create its own definition.

    On the same day, despite an outpouring of patient opposition, HHS announced that it was going forward with the IOM contract to develop its own clinical diagnostic criteria for ME/CFS, instead of adopting the 2003 Canadian Consensus Criteria (CCC) created and endorsed by ME/CFS experts.

    Regarding the IOM contract, the thirty-five experts stated, “Since the expert ME/CFS scientific and medical community hads developed and adopted a case definition for research and clinical purposes, this effort (the IOM study) is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on the disease. Worse, this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable."

    The use of non-experts is especially concerning because, thanks to the bad definitions that HHS has promoted, the disease is so poorly understood that the medical community at large believes the disease is either not real or is a form of depression or deconditioning. ME/CFS is not deconditioning or depression. It is a devastating disease that causes neurological and immunological dysfunction and leaves patients bedridden, housebound and unable to work. ME/CFS costs the U.S. economy an estimated $17-23 billion dollars in lost productivity and direct medical costs.

    Given the overwhelming opposition to HHS' plans by both patients and experts, I am asking you to do whatever you can to get HHS to follow the lead of ME/CFS disease experts. HHS must cancel the contract with IOM. HHS must adopt the Canadian Concensus Criteria.
    Lcasey67, justinreilly and leela like this.
  2. Hugocfs

    Hugocfs Senior Member

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    Rest assured everyone. Now that I have contacted POTUS and VPOTUS, cancellation will be coming in short order.
    Nielk likes this.
  3. Ember

    Ember Senior Member

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    Liz Willow's post on Twenty Years and Counting notes that this action is for everybody:
    Liz Willow and Nielk like this.
  4. Keela Too

    Keela Too Senior Member

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    N.Ireland
    Done! :)
    Nielk likes this.
  5. LaurelW

    LaurelW Senior Member

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    Utah
    Done.
    Nielk likes this.
  6. Nielk

    Nielk

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    .
    Thank you!:balloons:
  7. readyforlife

    readyforlife Senior Member

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    Done
    Nielk likes this.

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