Long COVID & ME/CFS Communities to Demonstrate on National Mall:
Watch the Press Conference
Washington, DC – The ME/CFS and Long COVID communities will demonstrate today with the installation of 300 cots on the National Mall to represent the millions of people missing from their lives due to post-infectious disease. We are the #MillionsMissing.
Patients from across the country have sent in hand-made pillowcases to represent how they are still sick and still fighting, to be displayed on the cots. #MEAction and Body Politic are organizing the demonstration.
WATCH the press conference at 2 p.m. ET via livestream on our social media accounts: Twitter, Facebook, YouTube
Ask a Question: If you would like to ask a question during the Q&A, please email us a question at [email protected]. Include your name and the name of your publication.
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How Long COVID Translates into ME/CFS:
Millions of people are “missing” from daily life – from time spent with families, from careers, from daily joys – due to the government’s abject failure to address post-infectious disease for decades.
The number of people with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) has more than quadrupled since the arrival of COVID-19 to as many as 9 million in the U.S.. As many as half the Long COVID community meets the criteria for ME/CFS. Most cases of ME/CFS are triggered by infection, often a viral infection. Before the pandemic, there were millions of people living with ME/CFS in the U.S.
We are missing:
- A bold, urgent government response to this crisis.
- Research focused on delivering evidence-based treatments as quickly as possible to patients.
- Clinicians who can diagnose and treat post-infectious conditions (ME/CFS, POTS, MCAS, EDS)
- Respect for the ME/CFS researchers, clinicians and patients who have been researching, treating and living with this disease for decades
We are Demanding:
- Operation Warp Speed for Long COVID and ME/CFS that is attuned to health inequity, that centers the needs of those most affected, and that channels resources into those communities. The ME/CFS community must be included in all resources offered to Long COVID.
- A centralized office coordinating Long COVID research that builds on existing knowledge of ME/CFS and other infection-associated conditions, and that expedites delivery of outcomes for patients – biomarkers, treatments, and a cure – as quickly as possible.
- Patient experts must lead the research initiative. The patient community must be in charge of deciding what clinical trials to prioritize funding, and how those trials will be designed. RECOVER is failing because researchers are willfully ignoring the advice and expertise of patient experts. Expertise on ME/CFS and other conditions affecting people with Long COVID must be at the forefront of our Long COVID research.
- Educate clinicians on a massive scale, specifically related to how to treat infection-associated conditions like ME/CFS, MCAS, POTS and EDS. Knowledge and treatments already exist for these conditions, and must be disseminated —particularly to those working with BIPOC and LGBTQ communities, and to rural and socioeconomically disadvantaged communities.
- Economic support of people with Long COVID and ME/CFS, including ending the rejection cycle for social security disability, providing emergency and ongoing housing resources and financial assistance.
About #MEAction:
#MEAction is building a global movement to fight for recognition, education, and research for ME/CFS. We have helped organize hundreds of demonstrations for ME/CFS across the world as part of our #MillionsMissing campaign.
About Body Politic:
Through a global network of COVID-19 patients, chronic illness allies, and health and disability advocates, Body Politic breaks down barriers to patient-driven whole-person care and well-being, particularly for historically marginalized communities by facilitating peer-support, cultivating patient-led research and public education, and leading community-based advocacy.
Speaker Line-up:
Jo Hsu, PhD MFA (They/Them) is a writer, educator, and scholar with ME/CFS. They are an assistant professor of Rhetoric & Writing at the University of Texas at Austin and the author of Constellating Home: Trans and Queer Asian American Rhetorics. They study storytelling as political strategy and their work appears in The Huffington Post, The Boston Globe, The Progressive, and many other news media, literary, and academic outlets. Their current research examines how cultural biases affect medical research and how diagnostic terms get distorted for political ends. You can access most of their work at www.vjohsu.com.
Dr. Margot Gage (she/ her) is a social epidemiologist and a nationally recognized expert on patient experiences with Long Covid. Dr. Gage has spoken nationally and internationally on medical inequality experiences by women with Long Covid. Her work aims to inform women on how to advocate for themselves in medical settings. She also focuses her research on health disparities, medical cannabis, environmental and social issues. Dr. Gage is an associate professor at Lamar University. You can follow her work on Twitter and Instagram.
Dir. Jaime Seltzer, MS (she / her) is the Director of Scientific and Medical Outreach at #MEAction. She is responsible for fostering communication between research scientists, clinicians, and people with ME/CFS. She works with Stanford, Columbia, Mayo Clinic, and Project ECHO on post-infectious chronic complex diseases, including ME/CFS and Long COVID, and is running a survey-based study and small proteomics mass spectrometry project on these diseases.
Brooke Keaton (she / her) is married to her college sweetheart, Jared, and a mother to two beautiful daughters, Jaren and Bria. Prior to having Covid in December 2020, Brooke was an Early Childhood Educator. Unable to return to work, she has taken on the role of an Advocate for Long Haulers like herself. Her Long Covid story has been featured on WCNC, Bloomberg Law, Raleigh News & Observer, NC Health News, Msn.com, and The Scientist Magazine. She’s also filmed two PSA’s for the NC Dept. of Health and Human Services. They are currently running on all major social media platforms as well as all NC network channels.
Gabriel San Emeterio (she/he/them) is a queer activist raised in Mexico City and living in New York City for the past 23 years. They hold a BA of their own design in Unique and Interdisciplinary Studies from CUNY, focused on Gender Studies and Community Organizing. Following their commitment to social justice, Gabriel obtained his graduate degree with honors from the Silberman School of Social Work with Community Organizing as a method of practice and a certificate in Social Policy. Gabriel’s passion for liberatory community work guides her life efforts, which include advocacy and grassroots organizing around policies and issues that affect the LGBTQIA+ community, welfare rights, and people living with HIV, ME/CFS and other fatiguing illnesses such as Long COVID.
Morgan Stephens is a journalist who has written for CNN Politics, CNN Business, The Daily Beast and HuffPost. After developing Long Covid in 2020, she wrote frankly about her traumatic experience in an essay for CNN Opinion. Since then, Stephens has appeared on KCAL, ABC Los Angeles, NPR, CNN+, Poynter, Columbia Journalism Review and a variety of podcasts discussing the issue. She is currently writing a memoir and poetry collection.
Dr. Dona Kim Murphey (she / her) is a neurologist, neuroscientist, historian of science, and community organizer. She considers health as telescoping connections within and between individuals, families, communities, and society and frames all policy as health policy. Dona currently sits on the boards of Woori Juntos, Doctors In Politics, and the Race and Equity Leadership and Research Collective. She has also participated in patient-ledresearch and advocacy efforts in Long Covid. Dona is a former school board candidate in Texas who recently filed a Voting Rights Act lawsuit against Pearland Independent School District demanding single-member districts for representative local government.
Her latest endeavor is prognosUs, a public benefit company that delivers early dementia screening and culturally fluent and language-specific counsel to caregivers fromcommunities disproportionately impacted by this racialized disease. Dona received her B.A. in History and Science from Harvard College and an M.D. and Ph.D. in Neuroscience from Baylor College of Medicine.
Mary Dimmock (she / her) worked at Pfizer for 31 years in drug metabolism research, clinical trials management, R&D information systems development, and R&D business process improvement and integration. She retired in 2011 when her son became ill with ME. Since then, she has spearheaded a number of US and international advocacy initiatives to accelerate research and improve clinical care for people with ME. She has also participated on NIH’s Common Data Elements initiative and CDC’s ME/CFS Medical Education Roundtable and together with Dr. Lucinda Bateman of Bateman Horne Center, co-founded the US ME/CFS Clinician Coalition in 2018. Mary is the carer for her son and daughter-in-law, who has now developed ME following COVID-19.
