Advocacy Works: Fighting for ME/CFS and Long COVID in Minnesota

For years, people in Minnesota with ME/CFS and Long COVID have been left without the resources they need to live with dignity. This has never been acceptable — and it’s why our community has fought so hard to change it.

The launch of the Minnesota Home Help Navigation Program is proof that advocacy works. This new program, funded by the Minnesota Department of Health, will help people with energy-limiting illness get the home and community-based services they need. It should be the beginning, not the end, of our state’s investment in these communities.

As Chair of the #MEAction Minnesota State Chapter, I draw on my decades of experience in HIV advocacy where I've seen firsthand how dedicated funding and support change lives. People living with ME/CFS and Long COVID deserve the same commitment that the Ryan White CARE Act made to people living with HIV. We need programs that help people stay in their homes, fill in the gaps in medical care, and live their lives — and we need them now.

Our state chapter has fought hard for every inch of progress. We helped secure the nation’s first state legislation to fund the Department of Health’s Long COVID program, and we continue to provide health officials with community-informed feedback on their plans. At the same time, we’ve pressed further — because people with ME deserve the same recognition and resources. This year we found strong champions in Senator Scott Dibble and Representative Kim Hicks, who introduced bills in the Senate and the House after hearing directly from people with ME about why this legislation is so critical.

But none of this progress comes without a fight. This spring, Republican leaders in the House  tried to eliminate all Long COVID funding. They gave the public just hours to respond, but our community rose to the moment. Dozens of people with ME/CFS and Long COVID, doctors, and allies submitted comments. We testified at the Minnesota Capitol, wrote letters to leadership, and made clear that cutting this lifeline would devastate families across Minnesota.

Because people refused to stay silent, we won. Funding was preserved in the final state budget. But the fight is far from over. Our ME/CFS legislation has not yet passed, and looming federal cuts to Medicaid and other pressures on the state budget threaten the services our communities depend on. The lesson is clear: advocacy works. When our community shows up, we make a difference — and we’ll keep showing up until every Minnesotan with ME/CFS and Long COVID has the care they need.

Terri L. Wilder, MSW

Chair, #MEAction Minnesota State Chapter

P.S. We also mourn the heartbreaking loss of Speaker Emerita Melissa Hortman, her husband, and dog to political violence — a reminder of the risks of public service and the need to build a future rooted in care and justice.

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NOTE: The #MEAction Minnesota State Chapter is all volunteer-led and operated. The #MEAction national nonprofit organization does not use state grant funds for legislative advocacy.