Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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KDP Posted this and it needs to be undertaken

Discussion in 'Action Alerts and Advocacy' started by muffin, Jun 24, 2010.

  1. muffin

    muffin Senior Member

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    OK. Time to hit NIH Francis Collins and ask that NIH push CFIDS/XMRV to the front of the line given the deadly XMRV findings.

    AGAIN - REMEMBER: Francis Collins WORKS FOR YOU. You are the taxpayer and Collins is paid by you. Don't be intimidated by these Federal pukes. Email them. Ask, tell, be gracious - but email them and keep emailing them. We MUST open our mouths or we will continue to get NOTHING.---------------------------------------------------------------------------------------------------------------
    New Director of NIH Francis Collins videos priorities of NIH
    From Facebook WPI: Please write Dr. Francis Collins of the NIH and ask him to fund important biomedical research into Neuroimmune Disease Research.

    There's video or written testimony
    http://energycommerce.house.gov/inde...rticle&id=2042

    http://energycommerce.house.gov/inde...alth&Itemid=72

    The Subcommittee on Health held a hearing entitled NIH in the 21st Century: The Director's Perspective on Tuesday, June 15, 2010, in room 2322 Rayburn House Office Building. The hearing examined the National Institutes of Healths research activities and priorities.

    I watched this other introductory hearing: http://videocast.nih.gov/Summary.asp?File=15869

    MECFS seems to fit right into his interests. He mentions Autism as a priority in both.

    rare and neglected diseases
    he was head of human genome project
    drugs directed at gene mutations: Iressa drug for lung liver cancer depends EGFR gene mutation
    pancreatic cancer need solution
    TRND rare and neglected diseases
    stem cells
    finding pathogens in developing world
    innovative new research areas
     
  2. Navid

    Navid Senior Member

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    can you post an email address?

    thanks
     
  3. muffin

    muffin Senior Member

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    Dr Francis S Collins M.D., Ph.D. NIH Director francis.collins@nih.gov

    http://www.nih.gov/about/director/index.htm

    Collins, Francis OD Employee: francis.collins@nih.gov 301-496-2433

    Legal Name: Dr Francis S Collins Preferred Name: Dr Francis Collins E-mail: francis.collins@nih.gov Location: Building 1 - Shannon Building, 126
    1 Center Dr
    Bethesda, MD Mail Stop: Phone: 301-496-2433 Fax: IC: OD (Office of the Director) Organization: OFC DIR (HNA) Classification: Employee
    Francis S. Collins, M.D., Ph.D.
    NIH Director
     
  4. muffin

    muffin Senior Member

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    Secretary Kathleen Sebelius - DHHS (or shortened to HHS): Kathleen.Sebelius@hhs.gov
    http://www.dhhs.gov/

    Remember that DHHS is the "owner" of NIH, CDC, and the following Subordinate Organizations:
    Administration for Children and Families
    Administration on Aging
    Agency for Healthcare Research and Quality
    Agency for Toxic Substances and Disease Registry
    Centers for Disease Control and Prevention
    Centers for Medicare and Medicaid Services
    Food and Drug Administration
    Health Resources and Services Administration
    Indian Health Service
    National Institutes of Health
    Program Support Center
    Substance Abuse and Mental Health Services Administration


    Secretary Kathleen Sebelius - DHHS: Kathleen.Sebelius@hhs.gov

    Last name Sebelius First name Kathleen
    Organization HHS/OS/IOS
    Job title Secretary HHS Room 120F
    Duty station Washington District of Columbia
    Mail stop 200 Independence Ave. SW.
    Internet e-mail Kathleen.Sebelius@hhs.gov
    ====================
    http://www.hhs.gov/secretary/
    Immediate Office of the Secretary
    Acronym list......: HHS/OS/IOS
    Phone................: 202-690-7000
    Postal address.: 200 Independence Ave. S.W. Washington, D.C. 20201
    Web site............: www.hhs.gov
     
  5. muffin

    muffin Senior Member

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    Now go ahead and email both Dr. Collins and Secretary Sebelius.

    REMEMBER: THEY WORK FOR YOU!
     

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