EmPOWER M.E. is a program dedicated to empowering patients and caregivers in medical and advocacy environments, giving our community tools to share our stories with impact. Driven by patient input, EmPOWER M.E. projects strive to ensure that no family ever has to learn “the hard way” on their journey with ME/CFS, Long Covid, or other post-infection diseases.
One of the cornerstones of this program is the EmPOWER M.E. Roundtable — a series that takes place during our annual Advocacy Week. Panels of patient advocates, professionals, and scientists share their expertise on topics relevant to the quality of life for people with ME/CFS, Long Covid, and their caregivers. Learn more about past events in this series below.
They say “all politics is local.” What does that mean for creating change for ME/CFS and Long Covid? Watch our panel of veteran state advocates discuss the importance of local and state advocacy.
We hear about initiatives in CA, FL, MA, MD, MN, DE, and NY; learn tips for starting projects in your neck of the woods!
Laura Bucholtz: ME/CFS Advocate, Florida State Lead
Charonda Johnson: Strategic Partnerships Manager, Covid Survivors for Change
Melinda Lipscomb: Co-founder and Co-chair, #MEAction Maryland State Chapter
Art Mirin: Chair, #MEAction California State Chapter
Charmian Proskauer: Former President, Massachusetts ME/CFS & FM Association
Suzanne Wheeler: Co-founder and President, Minnesota ME/CFS Alliance
Terri Wilder: Co-Leader, #MEAction New York State Chapter
Patient advocates and citizen scientists shared their experiences in navigating the world of research and clinical studies and how to make your voice heard at every level of research. Participants learned how to overcome barriers to equitable access and get involved in quality research opportunities. This panel also included a preview of the latest ME/CFS and Long Covid data and insights from the patient-centered You + ME Registry and Biobank, the latest work from the Patient-Centered Research Collaborative, and a report on the real cost of rare disease in America. The event also featured special guest and keynote remarks from Representative Don Beyer, co-author of the COVID-19 Long Hauler Act. Panelists included:
Dr. Sadie Whittaker: Chief Scientific Officer, Solve M.E.
Lisa McCorkell: Researcher and Team Lead Patient-Led Research Collaborative
Chimere L. Smith: Patient-Advocate, Long COVID Alliance
Shannon von Felden: RDLA Program Director, EveryLife Foundation for Rare Diseases
Sharon Stevenson, DVM, PhD led our expert panel of legal and medical experts as they shared their advice on applying, appealing, and documenting your case for public and private disability insurance with ME/CFS. Participants included:
Dr. Lucinda Bateman: Founder and Medical Director, Bateman Horne Center
Dr. Christopher Snell: Scientific Director, Workwell Foundation
Moselle C. Leland: Managing Attorney, Law Firm of Judith S. Leland
Andrew Kantor (Disability and Insurance Q&A session): Associate, Kantor & Kantor Law Firm
Stay up-to-date on the most recent information and expertise related to ME/CFS, Long COVID, and other post-viral illnesses, as well as programs and developments at Solve M.E..