CDC ME/CFS Call on Thurs Nov 2, 2017

Discussion in 'Advocacy, Contests and Events' started by Cort, Nov 1, 2017.

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  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member



    CDCME/CFSCDC’s ME/CFS Program
    Meetings

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    mce-anchor
    THE CDC CFS Patient-Centered Outreach and Communication Activity (PCOCA) has been changed to:
    CDC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Stakeholder Engagement and Communication (MECFS-SEC)

    CDC MECFS Stakeholder Engagement and Communication (SEC) Conference Call

    November 2, 2017
    3:00 –4:00 pm E.D.T.
    Number: 1-888-790-3251
    Participant Code: 3287773



    Meeting Agenda
    Time Description
    3:00pm Welcome and Telephone Overview
    3:05pm Updates from CDC – Elizabeth Unger, PhD, MD, Branch Chief, Chronic Viral Diseases Branch, Centers for Disease Control and Prevention
    3:15pm
    “Take Home Messages from the 2015 Institute of Medicine Report on ME/CFS”

    • Lucinda Bateman MD: Founder and Medical Director of the Bateman Horne Center
    • Ellen Clayton, MD, JD: Craig-Weaver Professor of Pediatrics, Vanderbilt University Medical Center, Professor of Law, Vanderbilt University School of Law, Co-Founder, Center for Biomedical Ethics and Society
    • Peter Rowe, MD: Professor of Pediatrics, Johns Hopkins Children’s Center, Director, Children’s Center Chronic Fatigue Clinic
    3:45pm Questions from MECFS SEC Call Mailbox for Guest Speaker and CDC
     
  2. Horizon

    Horizon Active Member

    What I gathered from the call:

    -CDC MECFS website will have a healthcare provider section. Almost complete.

    -CDC MECFS site will have "patient voice" section with patient stories.

    -CDC having Unrest showing for officials featuring Jen Brea.

    -CDC request topic suggestions be emailed to mecfssec@cdc.gov

    -CDC will offer continuing medical education with webmd, offered on medscape called "spotlight" for 1 yr credit.

    -CDC will be present at forum with experts like Dr. Montoya

    -CDC collaborating with other agencies on MECFS

    -Cosponsoring common data elements project
     
    Merry likes this.
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