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Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Petition by Whitney Dafoe's friends

Discussion in 'Action Alerts and Advocacy' started by medfeb, Aug 7, 2015.

  1. medfeb

    medfeb Senior Member

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    One of Whitney Dafoe's grade school/middle school/high school classmates has created a petition to the U.S. Senate Appropriations committee.

    Her petition is to:
    Staff Director/Clerk, U.S. Senate Committee on Appropriations Laura Friedel
    Professional Staff, U.S. Senate Committee on Appropriations Chol Pak
    Democratic Staff Director, Senate Appropriations Subcommittee on Labor, HHS & Education Alex Keenan
    Professional Staff, U.S. Senate Committee on Appropriations Lisa Bernhardt

    Her letter asks:
    Help Find a Cure for Whitney Dafoe and others like him!
    Reinstate Federal Research Funding for ME/CFS.


    Whitney's mom said their goal was 500 signatures but they already have 361 in the last day or so.

    If you have a moment, please sign.
    Thank you!

    https://www.change.org/p/laura-friedel-chol-pak-alex-keenan-lisa-bernhardt-help-find-a-cure-for-whitney-dafoe-and-others-like-him-reinstate-federal-research-funding-for-me-cfs?
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    @Sushi Is this different than the other thread about this? I'm confused with so many petitions.
     
  3. Sushi

    Sushi Senior Member Albuquerque

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    I don't know. I'm sure someone else does though.
     
  4. Bob

    Bob

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    Last edited: Aug 7, 2015
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  5. Gingergrrl

    Gingergrrl Senior Member

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    I am not sure of the differences either but just signed both petitions to cover all bases. I think of Whitney and his family every day.
     
    WillowJ, Bob, Sasha and 1 other person like this.
  6. Countrygirl

    Countrygirl Senior Member

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    Signed!
     
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  7. medfeb

    medfeb Senior Member

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    Sorry that I didn't make the scope of this clearer in my original post. Long day, too little brain.

    The title on this is "REINSTATE CDC RESEARCH FUNDING FOR ME/CFS"

    As background, the CDC funding was cut in the senate appropriations budget.
    CDC budget is currently being used for the multi-site study and for medical education.

    Some additional background...
    Jennie Spotila's blog has a post and a lively discussion on the issues primarily hinging on the value of the multi-site study versus the problems with the medical education. The other aspect for people is limited capacity to advocate and where to spend limited energy. Right now, many people are focused on NIH funding.

    The multi-site study is being done by disease experts and could have long term benefit. CDC's medical education has been problematic because of its vagueness, and the use of Oxford and Empirical findings, both of which have created confusion on the nature of the disease. As a result, it has a negative impact in the short term on patient clinical care.

    The medical education issue came to a head because of a recent federal business opportunities announcement for a public awareness campaign that uses Fukuda CFS language rather than starting to describe the disease with its hallmark criteria.

    Personally, while I generally support the multi-site study, I also have significant concerns with what is going to be done with medical education going forward. The recent business ops announcement raises red flags that CDC needs to address, as a separate issue from the multisite study. I've asked for clarification but have not gotten any yet. I plan to ask at the upcoming CFSAC if we don't have something before then.

    Whitney's friend started this petition to call for CDC funding to be reinstated. I posted as a favor.

    Solve ME/CFS also has an action to reinstate the CDC funding as well.

    Hope that helps. Will try to answer other questions if I can..
     
    WillowJ, catly, halcyon and 3 others like this.
  8. Bob

    Bob

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    Last edited: Aug 9, 2015
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