CDC ME/CFS Call on Thurs Nov 2, 2017

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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
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

 

[Horizon]

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