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#MillionsMissing


Six Months In: Here Is What We Have Built Together
In just six months, #MEAction has taken on some of the biggest issues facing people with ME and Long COVID. A small, dedicated staff, an extraordinary group of volunteers, and generous donors like you have gotten us here. I want to take a moment to tell you what we have accomplished together, because celebrating our collective work is important. We Showed Up Around the World This year, the #MillionsMissing campaign was amplified globally. From Brazil to France, the UK to Mex
Jun 264 min read


Our Community Needs Urgent Support
A $44,000 grant is waiting. Help us unlock it.
May 212 min read


4,000 Voices Heard by HHS. Here's What Comes Next.
Nearly 4,000 of you signed our letter to Secretary Kennedy calling on HHS to protect Medicaid access for people with ME and Long COVID.
May 202 min read


We Made Real Progress at #MillionsMissing — Here's What's Next
We built key relationships to protect Medicaid for ME and Long COVID. Now we need your help to keep going.
May 142 min read


#MEAction Urges HHS to Exempt ME/CFS and Long COVID Communities from Medicaid Work Requirements
On May 12th, the ME/CFS and Long COVID community are gathering outside the Department of Health and Human Services to call on HHS policymakers to intervene before tens of thousands of people with the debilitating diseases of ME/CFS and Long COVID lose access to the healthcare they need to survive.
May 83 min read


How to Participate in #MillionsMissing 2026
ME awareness month is here. Here's how to show up (at whatever battery level you have).
May 12 min read


Big News: $15K Matching Grant for Emergency Department Project
Give today and your donation will be matched up to $15K!
Apr 281 min read


#MEAction Sends Letter to Dr. OZ Urging for Medicaid Protection
Join our fight to protect Medicaid for our community!
Apr 282 min read


This Is What We Are Up Against
Fury and hope can coexist. Here’s why we believe this is the year everything changes for people with ME.
Apr 233 min read


Millions Missing Scotland 2025 raises a red alert
On Wednesday 14th May 2025, #MEAction Scotland held Millions Missing Scotland outside the Scottish Parliament in Edinburgh.
Jun 1, 20252 min read


Research Roadmap Petition
We reached 7,000 signatures on our last letter. This time, our goal is 10,000. Please sign the letter today and share it with your friends and family.
May 7, 20251 min read


Share This SOS Image On Your Socials
Share this message about #MillionsMissing with your own networks.
Apr 28, 20251 min read


Millions Missing Scotland 2025: Red alert for ME
#MEAction Scotland will be outside Scottish Parliament in Edinburgh on Wednesday 14th May, from 12–2pm, calling on the Scottish Government to act on its promises.
Apr 27, 20255 min read


#MEAction: Congress Is Hearing from Us
#MEAction has been hard at work connecting individuals to their elected officials to talk about the ME/CFS Research Roadmap, Medicaid, and telehealth.
Apr 23, 20252 min read


SOS: Save our Science
It’s time to send out our SOS signal if we want to have funded research.
Apr 11, 20256 min read


Why We’re Sending out an SOS this #MillionsMissing
On May 12th, we're sending out an SOS to Congress to Save our Support Systems, our Science, and our Society.
Apr 8, 20252 min read


#MillionsMissing 2025: Sending Out An SOS
For #MillionsMissing 2025, #MEAction is sending out an SOS.
Apr 2, 20252 min read


#TeachMETreatME: Celebrating An Impactful Campaign
We are THRILLED to share the successes of our #TeachMETreatME campaign as we report back on the medical education events that have taken place so far.
May 17, 20244 min read


#MillionsMissing Week is Here: #TeachMETreatME in Action!
Learn more about our campaign, the events, & how to get involved
May 7, 20243 min read


“#MillionsMissing is our drumbeat”
RSVP TODAY: We are hosting a preview party for the new, virtual Home of the #MillionsMissing this Sunday, September 24th, at 12 pm PT/ 3 pm ET/ 8 pm BST!We have always had to be creative in telling Our Story - the story of M.E. - to the world since so many of us cannot protest in the streets. How do we shine a light into our darkened rooms and demand the world’s attention? We started with shoes. Send in your shoes with a tag to tell your story. We will show the world that you
Sep 20, 20233 min read
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