Each year during Advocacy Month, we host our hallmark EmPOWER M.E. roundtable, during which 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.
This year, a panel of veteran state advocates discussed the importance of local and state advocacy and shared tips for starting projects in your neck of the woods. Participants included:
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 and Chair, US Action Working Group
Laura Bucholtz – Florida State Lead
Suzanne Wheeler – Co-founder and President, Minnesota ME/CFS Alliance
Charonda Johnson – Strategic Partnerships Manager, Covid Survivors for Change
Terri Wilder – Co-Leader, #MEAction New York State Chapter
Though this collection of advocates had varying strategies, energy levels, and connections to these diseases, each panelist demonstrated an unwavering commitment to creating positive impact for individuals with ME/CFS, Long Covid, and other post-infection diseases.
Several panelists stressed the importance of medical education, raising awareness, and clinical care — much of which can happen at a local state health department, or even your very own doctor’s office. Every conversation, Suzanne said, should be treated like a partnership.
Melinda echoed this notion, encouraging advocates to ensure their representatives are aware of them, their expertise, and know they can be called upon with questions. She also cautioned individuals to use their energy wisely.
Our panelists acknowledged the importance of advocating at all levels, while emphasizing that smaller, more local governments may have greater capacity to address your issue.
“Getting things done at the federal level takes a lot more red tape, and it takes a lot of bipartisan support,” Charonda shared, making it easier — and faster — to get things done at the local level.
For individuals just getting started, our advocates had three main bits of advice. Laura spoke to the importance of advocating with others. “Find your people,” she shared. Charonda suggested developing your story — your “elevator pitch” — which can be shared easily with others. If you’re unsure of where to get started, Art recommended contacting your local or state organizations.
Thank you to all our panelists for sharing their time and expertise with us!