NANDSC ME/CFS Research Roadmap Working Group

Background

In 2019, the National Advisory Neurological Disorders and Stroke (NANDS) Council Working Group for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) presented the Report of the NANDS Council Working Group for ME/CFS Research(pdf, 669 KB). In 2022, as part of the strategic planning process outlined in the report, NINDS announced the development of a Research Roadmap for ME/CFS, which will identify research priorities to move the field toward translational studies and clinical trials.

The roadmap will be informed by a new working group, which will include ME/CFS basic and clinical experts from the research community, leaders of ME/CFS non-profit advocacy and research organizations, as well as people with lived experience (i.e., individuals with ME/CFS, those with a family history of ME/CFS, caregivers/care partners, and/or patient advocates). The working group will meet regularly in 2023 to discuss and develop a Research Roadmap for ME/CFS.

Members of the Trans-NIH ME/CFS Working Group and staff from the NINDS Office of Science Policy and Planning and the NINDS Office of Neuroscience Communications and Engagement will coordinate the activities of the ME/CFS Research Roadmap Working Group. The roadmap will be presented at the NANDS Council meeting on February 14-15, 2024.

Charge of the Committee

The new NANDS Council Working Group will develop a research roadmap to provide scientific guidance to the NANDS Council on how best to advance research on ME/CFS. Consistent with the charge, the working group will:

  • Assess current ME/CFS research activities and identify opportunities and gaps in ME/CFS research to identify targets for the development of treatments.

Process, Deliverables, and Timeframe

This working group of the NANDS Council will:

  • Hold a series of webinars to assess current efforts and identify opportunities for research (see details below under Topic Area Webinars).
  • Seek input broadly from all relevant communities, including researchers, clinicians, non-profit advocacy organizations, people with lived experience, and other federal agencies.
  • Present the draft roadmap to the community at a webinar in late 2023 and at the NIH ME/CFS Research Conference in December 2023.
  • Present the final roadmap to the full NANDS Council at the February 2024 meeting.
  • Utilize information, recommendations, and feedback from:

Working Group Members

Co-chairs

Lucinda (Cindy) Bateman, M.D.
Founder and Medical Director
Bateman Horne Center
Salt Lake City, UT

Maureen Hanson, Ph.D.
Liberty Hyde Bailey Professor
Department of Molecular Biology and Genetics
Cornell University
Ithaca, NY

Members

Oved Amitay
Chief Executive Officer
Solve ME/CFS Initiative
Glendale, CA

Simon Carding, Ph.D.
Professor
Norwich Medical School, University of East Anglia
Programme Leader, Quadrum Institute Bioscience
Norwich Research Park
Norwich, UK

H. Craig Heller, Ph.D.
Professor
Department of Biology
Stanford University
Stanford, CA

David Holcomb
San Diego, CA

Leonard Jason, Ph.D.
Director of Center for Community Research and Professor
DePaul University
Chicago, IL

Cort Johnson
Health Rising
Henderson, NV

Laurie Jones
Executive Director
#MEAction
Santa Monica, CA

Nancy Klimas, M.D.
Director, Institute for Neuro-Immune Medicine
Director, Clinical Immunology Research, Miami VAMC GRECC
Professor and Chair, Department of Clinical Immunology College of Osteopathic Medicine
Nova Southeastern University
Ft. Lauderdale, FL

Anthony L. (Tony) Komaroff, M.D.
Simcox-Clifford-Higby Distinguished Professor of Medicine
Harvard Medical School

Senior Physician
Brigham and Women’s Hospital

Boston, MA

Gudrun Lange, Ph.D.
Independent Practitioner
Consultant
Clinical Neuropsychologist

Pain & Fatigue Study Center
Icahn School of Medicine at Mt. Sinai

New York, NY

Susan Levine, M.D.
New York, NY

W. Ian Lipkin, M.D.
John Snow Professor of Epidemiology
Professor of Pathology and Cell Biology

Director, Center for Infection and Immunity
Columbia University
New York, NY

Alain Moreau, Ph.D.
Director, Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network
Full Professor, Department of Stomatology, Faculty of Dentistry
Department of Biochemistry and Molecular Medicine, Faculty of Medicine at Université de Montréal
Scientific Director, Open Medicine Foundation Collaborative Research Center at CHU Sainte-Justine/Université de Montréal
Montreal, Quebec, Canada

Benjamin Natelson, M.D.
Professor
Pain & Fatigue Study Center
Department of Neurology
Icahn School of Medicine at Mount Sinai

New York, NY

Beth Pollack
Research Scientist
Director, Project Connect at MIT
Tal Research Group

Department of Biological Engineering
Massachusetts Institute of Technology

Cambridge, MA

​​​​Chris Ponting, Ph.D.
Professor
The University of Edinburgh
MRC Human Genetics Unit
Institute of Genetics and Cancer
Edinburgh, UK

Richard Simpson
Trustee, Invest in ME Research
Eastleigh, Hampshire, UK
Chair of European ME Alliance

David Systrom, M.D.
Director, Advanced Cardiopulmonary Exercise Testing Program
Assistant Professor of Medicine
Brigham and Women’s Hospital, Harvard Medical School
Boston, MA

Linda Tannenbaum
Founder & CEO/President
Open Medicine Foundation
Agoura Hills, CA

Elizabeth (Beth) Unger, M.D., Ph.D.
Chief of the Chronic Viral Disease Branch (CVDB)
Division of High-Consequence Pathogens and Pathology
National Center for Emerging and Zoonotic Infectious Diseases
Center for Disease Control and Prevention
Atlanta, GA

Derya Unutmaz, M.D.
Professor
The Jackson Laboratories
Farmington, CT

Sumeeta Varma, M.D., M.S.C.I.
New York, NY

Chris Wikman
Germantown, MD

Jarred Younger, Ph.D.
Professor
Department of Psychology

University of Alabama at Birmingham
Birmingham, AL

Topic Area Webinars

Members of the working group and people with lived experience will work together to plan and execute seven webinars focused on specific topic areas in ME/CFS research (see below). Some individuals will participate in multiple webinar groups.

Nervous System
Lisa Engel*
Craig Heller
Lenny Jason
Chloe Jones*
Laurie Jones
Gudrun Lange
Benjamin Natelson
Lorraine Steefel*
Jarred Younger

Immune System
Tracy Duvall*
David Kim*
Nancy Klimas
Roshan Kumar*
Susan Levine
Alain Moreau
Angela Termini*
Derya Unutmaz
Sumeeta Varma**

Circulation
Cindy Bateman
Peter Cariani*
Gwynn Dujardin*
Benjamin Natelson
Beth Pollack**
David Systrom
Elizabeth Weaver*
Jarred Younger

Metabolism
Tess Falor*
Thomas Gierach*
Ian Lipkin
Alain Moreau
Derek Simmonds*
Derya Unutmaz
Chris Wikman**

Genomics/Genetic Susceptibilities
Oved Amitay
Miriam Boyer*
James Holcomb*
Tony Komaroff
Alain Moreau
Chris Ponting
Hayla Sluss*
Linda Tannenbaum

Physiology
Maureen Hanson
Nancy Harkness*
Craig Heller
Michael Hermus*
Cort Johnson**
Beth Pollack
Richard Simpson
David Systrom

Chronic Infections
Simon Carding
Kenneth Friedman*
Maureen Hanson
David Holcomb**
Ikuko Kato*
Nancy Klimas
Tony Komaroff
Katya Lavine*
Beth Unger

 

 

*Individual with lived experience
**Individual with lived experience and member of the ME/CFS Research Roadmap Working Group

 FAQ

What is the ME/CFS Research Roadmap Working Group of Council?

This working group was put in place to identify the research priorities for ME/CFS in order to move the field closer to clinical trials to develop treatments for the disease. The final report from the working group will be presented to the NANDS Council for discussion and approval on February 14-15, 2024.

Is the ME/CFS Research Roadmap a scientific study?

The ME/CFS Research Roadmap is not a scientific study. The goal of the process to develop an ME/CFS Research Roadmap is to identify research priorities to move the field toward translational studies and clinical trials.

Who are the members of the working group?

The working group is composed of clinicians, researchers, leaders of ME/CFS non-profit advocacy and research organizations, and individuals with lived experience. The individuals with lived experience were identified through a self-nomination process.

How many people with lived experience are in the working group?

There are five individuals with lived experience in the working group of the NANDS Council (see roster above). Also, there are an additional 21 people with lived experience participating in the roadmap process.

How do you define an individual with lived experience?

Lived experience refers to “representation and understanding of an individual’s human experiences, choices, and options and how those factors influence one’s perception of knowledge” based on one’s own life (Source: HHS ASPE). For this process, we define an individual with lived experience as a person living with ME/CFS, those with a family history of ME/CFS, caregivers/care partners, and/or patient advocates.

What is the goal of including people with lived experience in the ME/CFS Research Roadmap process?

The goal of including people with lived experience is to identify research priorities that are most appropriate and beneficial for those impacted by ME/CFS. These individuals will play an important role in the process by sharing their experiences, perspectives, and opinions, which will be incorporated into the final ME/CFS Research Roadmap.

What is the longest length of disease of participants with ME/CFS? How many individuals have full-time caregivers?

The illness duration ranges from 2 years to 25 years, with a majority being ill for 5-10 years. Most individuals chose to not share additional details about their disease.

How can researchers, clinicians, non-profit advocacy and research organizations, and others in the broader ME/CFS community get involved in the research roadmap?

There will be opportunities for input from the broader ME/CFS community (including from those with lived experience) on the proposed research priorities and draft research roadmap through a crowdsourcing tool, called IdeaScale, as well as at public webinars. Information on upcoming feedback opportunities will be posted on this webpage and shared via the NIH ME/CFS listserv. Sign up for listserv updates here. Individuals can also provide comments at any time by sending an email to MECFSResearchRoadmap@ninds.nih.gov.

 

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