Meetings

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Stakeholder Engagement Calls
Interagency Working Group Meetings
Roundtable Meetings

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.

The next CDC ME/CFS Stakeholder Engagement and Communication (SEC) conference call will be held on Monday, May 6, 2024, 3:00 pm Eastern Time.

Meeting Agenda

Welcome and SEC Call Overview

Updates from CDC
- Elizabeth Unger, PhD, MD
  Branch Chief, Chronic Viral Diseases Branch, Centers for Disease Control and Prevention

Presentation: “Deep Phenotyping of Post-Infection Syndromes and the Way Forward”
- Brian T. Walitt, M.D., M.P.H.
  Avindra Nath, M.D.
  National Institutes of Health, National Institute of Neurological Diseases and Stroke (NINDS)

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.

Join the Live Webinar

Participants can join the Zoom webinar by clicking this link:

Join the Zoom Webinar

Zoom Webinar URL: https://cdc.zoomgov.com/j/1616905952?pwd=QWhabnVwRmllS3F1Z3FiRncvNmVTQT09

When the Zoom page opens, click on the “Launch Meeting” button, enter your email address and name, then click on the “Join Webinar” button.

Participants can also join by phone using one of the following numbers (when prompted, please enter the meeting id and passcode):

Telephone: 1-669-254-5252 or 1-646-828-7666
Meeting ID: 161 690 5952
Passcode: 66202454

International numbers available:
https://cdc.zoomgov.com/u/abb8G0pyoK

For closed captioning, please visit: https://www.streamtext.net/player?event=17440MECFSStakeholderEngagementandCommunications

Disclaimer: Although the content of calls is directed to patients, caregivers, healthcare professionals, and other interested parties, CDC has no control over who participates on the conference call. Therefore, please exercise discretion on sensitive content and material, as confidentiality during these calls cannot be guaranteed.

If you would like to be added to the call list, please send an email to MECFSSEC@cdc.gov.

Previous Meetings

Stakeholder Engagement and Communication (SEC) Calls

December 18, 2023, 3:00 PM ET

CDC ME/CFS Stakeholder Engagement and Communication (SEC) Call— “Viruses in ME/CFS – Research Updates from Early Career Investigators”- Introductions and background from Dr. Vicky Whittemore, Program Director for the Division of Neuroscience, National Institute of Neurological Disorders and Stroke for the National Institutes of Health. Presentations from Dr. Bhupesh K. Prusty, Institute for Virology and Immunobiology, University of Würzburg, Würzburg, Germany “Understanding Infectious Origin of ME/CFS through the Recent Pandemic,” and Dr. Dawei Li, Associate Professor, Immunology & Molecular Microbiology Texas Tech University Health Sciences Center, Lubbock, Texas, “Endogenous Retroviruses and ME/CFS.” Also featuring program updates from Dr. Elizabeth Unger and a question-and-answer session with all speakers.

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

Conference Call Transcript [PDF – 98 KB, 508]

Conference Call Audio [MP3 – 10 MB]

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

Conference Call Transcript [PDF – 263KB, 508]

Conference Call Audio [MP3 – 10MB]

The Biology of ME/CFS Emerging Models Presentation Slides [PDF – 2 MB]

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

Conference Call Transcript [PDF – 186KB, 508]

Pacing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome & Fibromyalgia Presentation [PDF – 3 MB]

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

Conference Call Transcript [PDF – 89KB, 508]

Conference Call Audio [MP3 – 9 MB]

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

Audio [MP3 – 10MB] | Transcript [PDF – 191KB]

ME/CFS–The Invisible Disease and its Educational Implications for Young People [PDF – 149KB, 508]

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

Audio File [MP3 – 10MB] | Transcript [PDF – 210KB]

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

Transcript for the 9th CDC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Stakeholder Engagement and Communication (ME/CFS-SEC) [PDF – 250KB]

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
Professor
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
Columbia University

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

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Interagency ME/CFS Working Group Meetings

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.

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.

Information on Medicare Services

August 11, 2020

Featuring updates from federal agencies including CDC, National Institutes of Health, Congressionally Directed Medical Research Programs, and Veterans Affairs.

More information on the Trans-NIH ME/CFS website.

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Roundtable Meetings

Summary of the Third Roundtable Meeting on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) held October 12 and 14, 2021

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.

Summary of the Second Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Roundtable Meeting held August 30, 2018

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]

Summary of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Roundtable Meeting on September 26, 2016

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.

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