CDC ME/CFS Call on Thurs Nov 2, 2017

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

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member


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    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
    “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

    -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.