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New simple instructions to e-mail your congressional representatives to cancel IOM contract

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

  1. Nielk

    Nielk

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    Simplified instructions for e-mailing your congressional representatives


    Go to : http://www.congressmerge.com/onlinedb/index.htm


    Type your zip code into the form and click on “Submit It”.

    The website will return the names of your two senators and one representative along with their phone numbers and a link to their contact form.

    Click on the link to the web contact form for your senators and representative. This will bring up the web contact form for that legislative leader.

    Use “Stop the IOM Contract to Redefine ME/CFS" as the subject.

    Select a choice dealing with healthcare if needed.

    Copy and paste the comment below:



    I am asking you to contact one or more of the following Senators and Representatives who chair committees with jurisdiction over the Department of Health and Human Services (HHS), (Senators Harkin, Murray, Sanders; Representatives Upton, Kingston, Pitts, and Ryan (WI), on my behalf.

    Ask them to contact HHS today and tell Department to follow the lead of Myalgic Encephalomyeltis/Chronic Fatigue Syndrome (ME/CFS) disease experts. Ask them to tell HHS to adopt the Canadian Consensus Criteria and cancel its contract with the Institute of Medicine (IOM) to redefine ME/CFS.

    On September 23, HHS has entered into contract with the Institute of Medicine ( IoM) 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.


    Fifty of the leading ME/CFS researchers and clinicians wrote a letter [1] 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.


    The fifty experts state, “Since the expert ME/CFS scientific and medical community has 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 statement of the fifty experts elicited a tremendous outpouring of support from the patient and advocate community. This resulted in a letter of support [2] signed by 171 patient advocates urging HHS to abandon their contract with the IOM and to adopt the CCC definition endorsed and adopted by the medical experts in the field.

    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.

    Thank you for your time and help.


    [1] https://dl.dropboxusercontent.com/u/89158245/Case Definition Letter Sept 23 2013.pdf

    [2] https://www.dropbox.com/s/3rewnlskfkfhmjz/Updated Signatures.pdf
    Last edited: Nov 14, 2013
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  2. Hugocfs

    Hugocfs Senior Member

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    Thanks a million. It is done. I can handle simple. Always like to operate on the KISS principle whenever possible.:thumbsup:
    ggingues, readyforlife and Nielk like this.
  3. lnester7

    lnester7 Seven

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    Done.
    ggingues and Nielk like this.
  4. Mjmouser

    Mjmouser

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    Emailed everyone---thank you for organizing this.
    ggingues and Nielk like this.
  5. Nielk

    Nielk

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    The 'template' letter has been edited to reflect the new letter from 50 experts and the letter from 171 advocates. Please send this new e-mail action to your congressional representatives.
    ggingues and justinreilly like this.
  6. BeBe

    BeBe

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    awesome. Done.
    --thanks for the simple instructions ;) Go Ahead and do it if you haven't!!
    Best of luck to us all
    ggingues and Nielk like this.
  7. Nielk

    Nielk

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    "In any situation, the best thing you can do is the right thing; the next best thing you can do is the wrong thing; the worst thing you can do is nothing."
    - Theodore Roosevelt

    Please take a little time to send this e-mail out to your congressional representative.;)
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