International ME/CFS and FM Awareness Day Is On May 12, 2018
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Watch live now- Senate Appropriation Committee Hearing- with Collins and Faucci

Discussion in 'Action Alerts and Advocacy' started by Nielk, Apr 30, 2015.

  1. Nielk

    Nielk

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    Happening right now!

    MEadvocacy.org Alert:

    This Thursday April 30th, 2015 10:00 am EST: the Senate Appropriations Labor, Health and Human Services, Education, and Related Agencies Subcommittee meeting will be held to discuss funding for NIH.

    Please watch webcast:
    The hearing will be webcast. Live streaming will begin when the hearing starts; it may be necessary to reload your web browser at this time. (Link to meeting will appear)

    Witness: Francis S. Collins, M.D., Ph.D.
    Director
    National Institutes of Health

    Accompanied by:
    Anthony Fauci, M.D.
    Director
    National Institute of Allergy and Infectious Diseases

    http://www.appropriations.senate.gov/…/labor-hhs-subcommitt…
     
    Last edited: Apr 30, 2015
    Gemini, SOC and Blue like this.
  2. Nielk

    Nielk

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    Q & A now with Dr. Collins. They are discussing new funding projects a the NIH. This hearing is a preliminary for setting NIH's 2016 budget.
     
  3. Denise

    Denise Senior Member

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    Nielk likes this.
  4. Nielk

    Nielk

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    This hearing is really interesting if you want to see how the decision comes about for funding different diseases.
     
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  5. Gemini

    Gemini Senior Member

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    Thanks for posting this @Nielk. Hugely important topic...

    First 2 hrs cordial exchanges between Collins, his Directors & Committee members, both sides extolling the virtues of "precision medicine" & Obama sanctioned 1 million cohort initiative.

    Tone dramatically shifts at 1:58:38...Senator Cassidy (a physician) challenges NIH's disease-specific funding allocations citing glaring examples of over-funded & under-funded diseases.

    ME/CFS not one of his examples but Cassidy clearly "gets" the NIH funding problem.

    Perhaps advocates @Wally @jspotila & others might take a listen & contact him?

    Webcast:http://1.usa.gov/1DYv1F9[external link]

    http://www.senate.gov/senators/114thCongress/Cassidy_Bill.htm

    http://www.cassidy.senate.gov/content/contact-bill
     
    Last edited: May 1, 2015
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  6. Wally

    Wally Senior Member

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    @Gemini,
    Just returned last night from a week in D.C. My second trip in the last month. There is much to share with the patient community about the advocacy efforts that have been taking place here in the U.S. I am taking the weekend off to try to re-charge my batteries, but we should have more information available on the MEadvocacy.org website by early next week. We will be sure to post on the Forum, so you and others will not miss any updates.

    So much for the patient community to be excited and energized about advocacy efforts for this illness. Your participation as advocates for this illness, even for those who are homebound or bedbound, will be critical in the next steps we will be unveiling to get this illness on the map for those who control the purse strings for funding research in the U.S.

    Those April showers have really helped to bring into bloom a whole new re-birth of advocacy efforts. I believe 2015 will be a year to remember for when the tide for this illness changed.

    May the force of change be with all of us. :angel::hug::angel:

    Wally (Susan Kreutzer)
     
    Last edited: May 2, 2015
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  7. Gemini

    Gemini Senior Member

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    $215 million proposed for the million-person precision medicine mega-study...

    Committee pressed Collins for assurance "minorities" & the "under-served" will be in the cohort...

    Collins' reply: we may over-sample some minorities & 50% will be women...

    Q: Will ME/CFS patients be in the cohort? in appropriate numbers? Possibly a CFSAC question?

    http://www.nih.gov/precisionmedicine/who.htm

    Collins mentions UK Biobank 500,000 study collaboration, Rory Collins Univ Oxford is on the US Working Group:

    http://www.nih.gov/precisionmedicine/working-group.htm

    Same question any ME/CFS patients in the UK study? Perhaps @charles shepherd might comment?
     
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  8. Gemini

    Gemini Senior Member

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    Thank you @Wally for your outstanding advocacy in Washington DC!

    Looking forward to your update next week!
     
    catly likes this.

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