Join us on Thursday, September 25 for a 30-minute livestream briefing on the human and economic burden of ME/CFS, the NIH ME/CFS RESEARCH ROADMAP, and what policymakers can do now.
This first-of-its-kind livestream briefing puts policymakers face-to-face with the lived reality of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—a complex, disabling disease that has too often been overlooked by federal institutions. While many people with ME/CFS are too sick to travel to Washington or participate in traditional advocacy, this virtual event bridges that gap—featuring direct testimony from leading researchers, award-winning journalists, and patients themselves. In just 30 minutes, attendees will gain a clear, personal, and scientific understanding of what’s happening in the field, why the NIH’s ME/CFS Research Roadmap matters, and how Congress can help accelerate meaningful progress.
Overview
AGENDA
Welcome Remarks
The briefing opens with a concise introduction to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—a disabling, underrecognized disease affecting millions of Americans.
Video Researcher Profile
A brief video segment featuring one of the nation’s leading ME/CFS researchers, Dr. Maureen Hanson, offering unique insights into how a sustained federal investment could unlock critical breakthroughs in diagnostics, treatments, and quality of life for people with ME/CFS.
Panel Discussion
A panel of patient and experts will share powerful and personal perspectives on what it’s like living with ME/CFS the urgent need for progress in care and research.
Moderated Q&A
Join the conversation by submitting your questions—panelists will respond live with a focus on congressional priorities, research impact, and what comes next.
PANELISTS
Ryan Prior, Moderator
Journalist & Author
Ryan Prior is an award winning journalist and author telling stories at the frontlines of science and democracy, with a spotlight ME/CFS and Long COVID. Over the past 12 years, he has written hundreds of stories for CNN, Psychology Today, The Guardian, The Nation, STAT, USA Today, and The Daily Beast. He is the author of The Long Haul: How Long Covid Survivors Are Revolutionizing Healthcare, which explores the global impact of the pandemic and the chronic illness crisis that followed. He holds a MPA from the Harvard Kennedy School, where he was a William A. Starr Journalism Innovations Fellow. He graduated Phi Beta Kappa from the University of Georgia, through its Honors College, and was named to the school's "40 Under 40" alumni list in 2018.
Dr. W. Ian Lipkin
Researcher
W. Ian Lipkin, John Snow Professor, Director of the Center for Infection and Immunity and the Center for Solutions for ME/CFS at Columbia University, has pioneered molecular methods for infectious disease surveillance, discovered over 2,500 viruses, mentored over 60 graduate students and fellows, and authored 500 publications. He directed the Northeast Biodefense Center (2003-2015), co-chaired the National Biosurveillance Advisory Subcommittee for the White House (2010-2011), served on the Advisory Committee to NIH Director Collins (2015-2017) and was chief scientific consultant for the Soderbergh movie “Contagion”. Honors include the Mendel Medal, National Academy of Inventors, AAAS, ASM, IDSA, Pew Scholar, Ellison Scholar, Drexel Prize, Assoc Amer Physicians, Council on Foreign Relations.
Elizabeth Ansell
Founder of #NotJustFatigue
Elizabeth Ansell, founder of #NotJustFatigue, is an advocate, storyteller, and changemaker for the ME/CFS community. A graduate of the University of Pennsylvania, she has a background in English literature and TV production. Bed-bound since 2016, Elizabeth uses her lived experience and creative skills to educate others about ME/CFS, dismantle stigma, and build community for those navigating the same invisible illness. Through NotJustFatigue.org, she translates the reality of ME/CFS into accessible, emotionally impactful content by ways of videos, timelines, and documentary snapshots. She has reached over 350,000 people and earned accolades like the Shorty Awards Social Activism Audience Honor.
Heidi Menera Norgaard
Person with ME/CFS
Heidi Menera Norgaard is a person with ME/CFS who’s been living with the disease for 18 years. Prior to becoming ill, she was an active member of the community, a business owner, and able to intensely exercise most days of the week. But now, almost two decades later, she is largely homebound and sometimes uses a wheelchair. Her symptoms range from extreme fatigue and cognitive problems to major sensory overload and even episodes where she is unable to speak or move at all. She’s lost her independence and her business; she, her husband, and her son moved in with her parents in 2012. Despite being in their 70’s, her parents act as her full time caregivers.
Submit Your Questions
WHO WE ARE
#NotJustFatigue is a 501(c) (3) nonprofit organization dedicated to raising awareness about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), advocating for individuals affected by the disease, engaging with government officials to shape policy, improving patient access for diagnosis and treatment, and securing critical funding for medical research. ME/CFS is a severely debilitating physiological illness, commonly known as "Chronic Fatigue Syndrome", with 60+ reported symptoms that impact an estimated 3.3 million Americans (CDC)-fatigue is just one of them. Among those affected, 75% cannot attend work or school, while 25% are entirely homebound or bedbound, with a quality of life comparable to that of congestive heart failure or cancer. Despite the severity and scope of ME/CFS, there are still no FDA-approved treatments, biomarkers, or diagnostic tests-leaving people with ME/CFS without effective medical interventions and often facing years of misdiagnosis and inadequate care.
Launched in 2024, NotJustFatigue.org is filling the void in available information on ME/CFS, educating audiences, and raising awareness for the disease. The site's innovative format and engaging style achieved 11 Vega awards, 5 Muse Awards, 4 Titan Health Awards, 11 Communicator Awards, 2 Shorty Audience Honoree Awards, and Webby Awards Honoree status.