EmPOWER M.E.

Tools and Resources for People Impacted by Post-Infection Diseases

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 and their caregivers. Learn more about past events in this series below.

2021: Elevating Your Voice In Research

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

2020: How to Navigate Disability Insurance with ME/CFS

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

2019: Empowerment in the Doctor’s Office: Overcoming White Coat Syndrome

Board Certified Patient Advocate, Sharon Stevenson, DVM PhD, moderated two workshop-style panels, “Empowerment in the Doctor’s Office: Overcoming White Coat Syndrome,” and “Advocacy: Your Story, Your Impact,” providing specific tools to empower people with ME/CFS to feel more comfortable advocating and representing their own needs. Panelists included:

Dr. Nancy Klimas: ME/CFS clinician and researcher, Director of the Institute for Neuro-Immune Medicine, Nova Southeastern University, Nova Southeastern University
Dr. Camille Birch: Ramsay Award Research Awardee and person with ME/CFS, Genome Analyst, HudsonAlpha Institute for Biotechnology
Eric Braun, PhD: Caregiver and ME/CFS advocate
Secretary Rona Kramer: Secretary, Maryland Department of Aging, Former State Senator, family member of person with ME/CFS
Emily Taylor: Director of Advocacy, Solve M.E., and caregiver of person with ME/CFS

Other EmPOWER M.E. Projects

EmPOWER M.E. Microgrant Program

Overseen by Community Advisory Council, the EmPOWER M.E. Microgrant Program funds educational, patient empowerment, and advocacy events hosted by local partners and individuals. The goal is to bring key resources to frontline healthcare providers and people with ME/CFS. To learn more and submit a proposal, contact us.

Suggestions for EmPOWER M.E.

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