CDC holds regular Stakeholder Engagement and Communication (SEC) calls to update the ME/CFS community on CDC activities and facilitate presentations from guest speakers. CDC co-sponsors and participates in the NIH Interagency ME/CFS Working Group meetings. CDC also holds Roundtable Meetings with partners composed of ME/CFS patients, advocates, educators, clinicians, and researchers to gather vital partner input on specific projects and products.
Welcome and SEC Call Overview
Updates from CDC
Jennifer R. Cope, MD, MPH
Medical Officer, Chronic Viral Diseases Branch, Centers for Disease Control and Prevention
Jacek Skarbinski, MD
Department of Infectious Diseases, Kaiser Oakland/Richmond, California
Assistant Program Director, Kaiser Permanente Northern California HIV Fellowship
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-like Illness Following COVID-19 in a Large Integrated Health System: Findings from the STOP ME/CFS Study
Participants can join the Zoom webinar by clicking the link below:
- Zoom Webinar URL: https://cdc.zoomgov.com/j/1605335113?pwd=UFdKbkpsbG45TkVWMVNXY05WWDRoZz09
When the Zoom page opens:
- Click on the “launch meeting” button.
- Enter your email address and name.
- Click on the “join webinar” button.
Join by phone using one of the following numbers (when prompted, please enter the meeting ID and passcode):
Telephone: 1-669-254-5252 or 1-646-964-1167
Meeting ID: 160 533 5113
Question and Answer (Q&A)
To ask a question during the meeting within the Zoom webinar platform, please:
- Click on the “Raise Hand” button.
- Ask your question when prompted.
To ask a question during the meeting by phone, please:
- Enter *9 to add yourself to the queue.
- Ask your question when prompted.
To access closed captioning, please click the following link:
If you would like to be notified of future calls, please send an email to MECFSSEC@cdc.gov.
May 17, 2023, 3:00 PM ET
CDC ME/CFS Stakeholder Engagement and Communication (SEC) Call—Featuring a presentation titled, “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-like Illness Following COVID-19 in a Large Integrated Health System: Findings from the STOP ME/CFS Study” by Dr. Jacek Skarbinski,
Department of Infectious Diseases, Kaiser Oakland/Richmond, California. Also featuring program updates from Dr. Jennifer Cope and a question-and-answer session with Drs. Skarbinski, Unger, and Cope.
December 6, 2022, 3:00 PM ET
CDC ME/CFS Stakeholder Engagement and Communication (SEC) Call—Featuring a presentation titled, “Neurovascular Dysregulation During Exercise in ME/CFS & Long COVID,” by Dr. David Systrom, Brigham and Women’s Hospital and Harvard Medical School. Also featuring program updates from Drs. Elizabeth Unger and Jennifer Cope and a question-and-answer session with Drs. Systrom and Unger.
May 13, 2022, 3:00 PM ET
CDC ME/CFS Stakeholder Engagement and Communication (SEC) Call—Featuring a presentation titled, “Myalgic Encephalomyelitits/Chronic Fatigue Syndrome Management Options,” by Dr. Stephen Gluckman, Professor of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA and updates from Elizabeth Unger, Ph.D., MD, Branch Chief of CDC’s Chronic Viral Disease Branch, and a question and answer with Dr. Gluckman.
December 16, 2021, 3:00 PM ET
CDC ME/CFS Stakeholder Engagement and Communication (SEC) Call—Featuring a presentation titled, “Is ME/CFS Another Face of Long Covid?” by Dr. Hector Bonilla, Clinical Associate Professor of Infectious Diseases at Stanford University’s School of Medicine and updates from Elizabeth Unger, Ph.D., MD, Branch Chief of CDC’s Chronic Viral Disease Branch, and a question and answer with Dr. Bonilla and CDC.
May 13, 2021, 3:00 PM ET
CDC ME/CFS Stakeholder Engagement and Communication (SEC) Call—Featuring a presentation on “Exercise Testing in the MCAM Study” by Dr. Dane Cook, Professor of Exercise Psychology from the University of Wisconsin-Madison School of Education and updates from Elizabeth Unger, Ph.D., MD, Branch Chief of CDC’s Chronic Viral Disease Branch, and a question and answer with Dr. Cook and CDC.
September 23, 2020, 3:00 PM ET
CDC ME/CFS Stakeholder Engagement and Communication (SEC) Call—Featuring a presentation on “Immune Dysfunction in ME/CFS” from Maureen Hanson, Ph.D., Liberty Hyde Bailey Professor in the Department of Molecular Biology & Genetics, Cornell University, Ithaca, New York, CDC updates from Elizabeth Unger, Ph.D., MD, Branch Chief of CDC’s Chronic Viral Diseases Branch, and a question and answer session with Dr. Hanson and CDC.
February 13, 2020
Update on CDC ME/CFS program with Drs. Elizabeth Unger, Nanda Issa, Dana Brimmer
September 16, 2019
“The Biology of ME/CFS: Emerging Models”
Anthony L. Komaroff, M.D.
Simcox-Clifford-Higby Distinguished Professor of Medicine, Harvard Medical School
Senior Physician, Brigham and Women’s Hospital, Boston, Massachusetts
June 3, 2019
“Pacing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome & Fibromyalgia”
Alison C. Bested M.D. FRCPC
Diplomate, Integrative Medicine
Associate Professor and Chair Integrative Medicine
Institute for Neuro-Immune Medicine
Dr. Kiran Patel College of Osteopathic Medicine
Nova Southeastern University, Fort Lauderdale, Florida
March 11, 2019
“Orthostatic Intolerance: Research and Clinical Insights“
Benjamin H. Natelson, MD
Director, Pain & Fatigue Study Center, Mount Sinai Beth Israel, New York, New York
Professor of Neurology, Icahn School of Medicine at Mount Sinai, New York, New York
May 10, 2018
“ME/CFS: The Invisible Disease and its Educational Implications for Young People”
Faith Newton, Ed.D., Professor of Education, Coordinator of Middle-Level Education, Delaware State University
November 2, 2017
“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
May 25, 2017
“Metabolic Features of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)”
Robert K. Naviaux, MD, PhD
Professor of Genetics Biochemical Genetics and Metabolism Departments of Medicine, Pediatrics, and Pathology
Co-director The Mitochondrial and Metabolic Disease Center (MMDC)
University of California San Diego (UCSD) School of Medicine
June 23, 2016
“Current and Future Research on ME/CFS Treatments—an Update from the Field”
Jarred Younger, Ph.D.
Associate Professor, Department of Psychology
Associate Professor, Department of Anesthesiology and Perioperative Medicine
Associate Professor, Division of Clinical Immunology and Rheumatology
Director of the Neuroinflammation, Pain and Fatigue Lab at UAB University of Alabama at Birmingham
October 8, 2015
”Managing ME/CFS/SEID: Learning to Pace”
Charles Lapp, MD
Medical Director, Hunter-Hopkins Center, Charlotte, NC
Bruce Campbell, PhD
Executive Director, CFIDS and Fibromyalgia Self-Help Program
February 23, 2015
“Stanford ME/CFS Initiative: Collaboration, Innovation, and Discovery”
Jose Montoya, MD
Professor of Medicine
Department of Medicine, Division of Infectious Diseases and Geographic Medicine, 2016
School of Medicine Stanford University, Stanford, California
September 9, 2014
“Can ME/CFS and FM Sleep Research Help You Sleep?”
Lucinda Bateman MD
Director, Fatigue Consultation Clinic
Adjunct Assistant Professor, Anesthesiology—Operations, University of Utah
Adjunct Instructor, Family And Preventive Medicine, University of Utah
February 25, 2014
“CFS and Cognitive Function”
Gudrun Lange, Ph.D.
Consultant Clinical Neuropsychologist
Pain and Fatigue Study Center
Beth Israel Medical Center, NY, NY
Department of Physical Medicine and Rehabilitation Rutgers University
September 10, 2013
“Infection and Immunity in CFS”
W. Ian Lipkin, MD
John Snow Professor and Director
Center for Infection and Immunity
Mailman School of Public Health
January 14, 2013
“Redefining Exercise in CFS through Reconstruction of Aerobic Capacity”
Nancy Klimas, MD
Director, Institute for Neuro-Immune Medicine
Connie Sol, PhDc
Clinical Exercise Physiologist, Institute for Neuro-Immune Medicine
August 9, 2012
“Issues in Identifying Similar Participants for CFS Studies”
Leonard Jason, PhD
Director, Center for Community Research, DePaul University
February 25, 2021 and February 26, 2021
The working group addressed workforce development and education of ME/CFS healthcare providers and shared updates about current activities to address prolonged illness following COVID-19, also referred to as “long COVID.”
- Meeting Agenda [PDF—2 pages]
- February 25
- Video Recording
- Transcript [PDF—83 pages]
- Presentations—The following is a compilation of slides from a February 25, 2021, Interagency ME/CFS Working Group Meeting. Slides included in the compilation represent the views of the author and do not necessarily represent the official position of the CDC.
- Unmet Needs and Barriers to Care for Persons with ME/CFS: The Community Perspective [PDF—28 pages]
- ME/CFS Clinician Coalition Survey [PDF—14 pages]
- CDC Summary of Activities Related to ME/CFS Workforce Development [PDF—7 pages]
- ME/CFS Undergraduate Medical Education Curriculum [PDF—11 pages]
- ME/CFS & School Nurses [PDF—3 pages]
- CDC Systematic Review of ME/CFS Treatment [PDF—9 pages]
- NIH Grant Mechanisms for Clinician-Scientists [PDF—9 pages]
- February 26
- Video Recording
- Transcript [PDF—41 pages]
- Presentations—The following is a compilation of slides from a February 26, 2021, Interagency ME/CFS Working Group Meeting. Slides included in the compilation represent the views of the author and do not necessarily represent the official position of CDC.
- Treating Long COVID: Clinician Experience with Post-Acute COVID-19 Care [PDF—14 pages]
- Understanding Long COVID: CDC Current Projects & Collaborations [PDF—14 pages]
- Tackling Long COVID: The CDC COVID-19 Response [PDF—10 pages]
- NIH Post Acute/Long COVID: Cross Agency Communication and Collaboration [PDF—8 pages]
- NIH Ongoing Research and Planning for New Research Program on Post Acute Sequelae of SARS-CoV-2 Infection (PASC) [PDF—21 pages]
Building on the format of the last two roundtable meetings, the third roundtable provided an opportunity for participants to share successful partnership experiences with the theme of Working Better Together.
- Roundtable Summary [PDF – 165 KB]
- Appendix 1: Meeting Agenda [PDF – 54 KB]
- Appendix 2: Meeting Participants and Stakeholder Call List [PDF – 53 KB]
- Appendix 3: Highlights from Spring 2021 Stakeholder Call Discussions, McKing Consulting Corporation, Presentation [PDF – 466 KB]
- Appendix 4: Setting the Stage for Partnerships, Elizabeth Unger, CDC Chronic Viral Diseases Branch, Presentation [PDF – 416 KB]
- Appendix 5: A Brief Overview of Federal Partnerships, Tim McLeod, CDC Division of High-Consequence Pathogens and Pathology, Presentation [PDF – 141 KB]
- Appendix 6: Making Friends: Collaborating and Cooperating, Wendy Ruben, National Center for Birth Defects and Developmental Disabilities, Presentation [PDF – 616 KB]
- Appendix 7: Partnering for Success: Lessons from the Division of Population Health, Michelle Walsh, National Center for Chronic Disease Prevention and Health Promotion, Presentation [PDF – 1 MB]
- Appendix 8: Let’s Stop HIV Together: Reducing Stigma through Promotion of HIV Resources, Judith Griffith, National Center for HIV, VH, STD and TB Prevention, Presentation [PDF – 2 MB]
Building on the first roundtable project, the goal of this meeting was to provide an opportunity for partners to share their input on ME/CFS educational materials for patients and healthcare providers.
- NEW Healthcare Provider Tools—These handouts were developed based on feedback from partners and serve as a final product from this meeting. These tools help healthcare providers with patient care including assessment, management of symptoms, and other supportive strategies.
- NEW Patient Tools—These handouts were developed based on feedback from partners and serve as a final product from this meeting. These tools help patients and caregivers manage their healthcare provider visits.
- Roundtable Summary [PDF – 118KB]
- Appendix 1: Call List [PDF – 342KB]
- Appendix 2: Agenda [PDF – 508KB]
- Appendix 3: Fred Fridinger, DrPH presentation [PDF – 1.04MB]
- Appendix 3: Lily Chu, MD, MSHS presentation [PDF – 333KB]
- Appendix 3: Christine E. Prue, MSPD, PhD, and Valerie Johnson, MPH, CHES presentation [PDF – 1.65MB]
The goal of this face-to-face meeting was to provide an opportunity to gather partner input on how the Institute of Medicine (IOM) Report could best be communicated through materials and content on the CDC website.