Our community has waited far too long for answers, treatments, and the federal investment that ME/CFS and Long Covid deserve. Over the years, we’ve learned that need alone doesn’t move funding. Congress invests in the communities that are organized, connected, and showing up year-round.
This month’s election gave us reasons to hope. Voters sent more scientists, researchers, and doctors to Congress than ever before, and many incoming members campaigned with healthcare as a top priority.
We are already seeing bills being pre-filed to improve our healthcare system. Many of them already understand how research works and what patients face. When they take office in January, they’ll be setting up offices, hiring staff, and deciding which issues to champion, and we want ME/CFS and Long Covid to be among the first stories they hear.
That’s why we’re excited to introduce The Long Game.
Why The Long Game?
Advocacy Week is a key part of our yearly efforts to get federal funding for ME/CFS and Long Covid. But the relationships that make Advocacy Week effective take time to build. We want our Congressional offices to know our community before we walk in with funding requests, so that by Advocacy Week 2027, we’re continuing conversations we’ve already started. That’s why we’re going to be approaching this as a year-round effort.
What we’ll work on together
You’ve told us you want more chances to advocate throughout the year and a clearer sense of how the process works. Together, we’ll cover:
- How federal research funding decisions actually happen
- Who makes those decisions, and how to reach them
- How to share your story in a way that connects with policymakers
- How to write and pitch an op-ed
- How to build relationships with congressional offices and make effective requests
- How to advocate in ways that work with fluctuating energy
Starting Wednesday, January 6, just as the new Congress begins its work, we’ll meet online for one hour every two weeks leading up to Advocacy Week in May, and we’ll keep going from there. Every session will leave you with something practical you can use right away. Sessions are recorded, so you can join from bed, watch on your own schedule, or take it a few minutes at a time.
There’s a role for you
Whether you’re new to advocacy or have been at it for years, there’s a place for you here. If you live with ME/CFS or Long Covid, your experience is what moves people, and you don’t need connections or experience to make a difference. If you’re a caregiver or ally, you can help carry the work when someone you love can’t. If you’re a seasoned advocate, we’ll help you think more strategically and deepen the relationships that move policy.
Let’s get started
Change rarely comes from one meeting, one email, or one person. It comes from people who keep showing up, even when progress feels slow. So let’s start by taking one action together: Join The Long Game — Free Trainings Begin January 6
