The immediate stakes are high this year! Some of our most vulnerable community members are at risk of losing their Medicaid health insurance unless they can prove they are “medically frail” or have “a serious or complex medical condition.” 

People with ME and Long COVID are also at risk of losing access to critical Home and Community Based Services (HCBS) that help with everyday tasks of living.

U.S. ACTIONS FOR #MILLIONSMISSING

• Tell your story. We need as many stories as possible to show the world how severe and complex ME and Long COVID really are, and why access to care is so crucial. A LOT is at stake for our community. Our stories are powerful for building recognition that ME is a serious, complex medical condition. See our Toolkit for prompts, ideas on how to tell your story.
   

• Join us in person at HHS in Washington D.C. for an art installation and storytelling session to educate HHS employees about the severity of ME and Long COVID. Register here.

• Amplify our stories on social media.  Reshare/Like/Comment/ Interact with a Post on @MEActNet Social Media
   

• Join our year-long Medicaid campaign: Throughout 2026, #MEAction state chapters will drive the advocacy effort to educate Medicaid directors and lawmakers about the importance of categorizing ME/CFS, Long Covid, and other under-recognized chronic illnesses as “serious or complex medical conditions.” We must make sure our community gets exempt from the new Medicaid work requirements. Help our most vulnerable keep their health insurance! Reach out to your state or region’s chapter here, or email Advocacy Manager therese@meaction.net to join this fight!