#MillionsMissing is a global movement calling for justice for people with myalgic encephalomyelitis (ME), also known as ME/CFS.

#MEAction launched the #MillionsMissing movement to demand equity from our governments for M.E. in research, clinical care and support. #MEAction has organized 12 #MillionsMissing demonstrations since 2016 with hundreds of cities across the world demonstrating. 

In 2025, #MEAction organized a protest in front of the U.S. Capitol calling for Congress to protect our core supports, like Medicaid and research funding. In 2024, we hosted 20 medical education events across the U.S. as part of our campaign to educate clinicians about ME/CFS.

In 2023, #MEAction set up a massive display of 300 beds on the Mall in Washington, DC to call attention to the crisis of ME/CFS and Long COVID. In 2022, we protested in front of the White House calling for the Biden administration to address the crisis of ME/CFS.  The COVID-19 pandemic quadrupled the number of people with M.E. in the U.S. to an estimated 9 million Americans. 

Three protestors holding up signs in front of the White House

White House #MillionsMissing protest, 2022

A group of protestors lying on the ground

Scotland #MillionsMissing, 2019

A group of people in wheelchairs in the front and people behind them, holding signs

Tokyo #MillionsMissing, 2018

Cots with red blankets that say still sick still fighting

The Mall #MillionsMissing, 2023

A black woman with curly black hair wearing jeans and a red t-shirt speaking into a megaphone with a group of people behind her

New York, 2017

Hundreds of pairs of shoes on the ground with the words can you see me now written in chalk

#MillionsMissing Southhampton, UK

WHY WE CALL OURSELVES THE #MILLIONSMISSING

#MillionsMissing was coined by a community member to represent the millions of people missing from their lives due to ME –  missing from their careers, missing from time spent with family and friends, missing simple pleasures like sitting in the sun or taking a walk.  We are missing because our governments have chosen to neglect us.  We are missing millions of research dollars; we are missing educated clinicians; we are missing care and compassion; we are missing an urgent response from our governments.

The pandemic has been devastating for our community, quadrupling the number of people with ME from an estimated 1.5 million pre-pandemic to an estimated 9 million people today. The majority of people develop ME following an infectious trigger, such as a virus, so this outcome is no surprise, and the ME community was sounding the alarm at the start of the pandemic.

Design on the pillowcase shows stick figure staring forlornly into the mirror. Behind them is a window showing sunny outdoors with people playing.
Group of protestors posing for camera holding signs, some sitting and some standing. All wearing red shirts.
Group of protestors holding signs in front of Lutheran church sign.
Mother and daughter protestors holding sign that reads, "Parliament, There are Millions Missing."
A display of red and white shoes in front of a massive metal gate with a picture of the Buddha's face on it, surrounded by palm trees in background. A few signs reading "Millions Missing" are planted in the yard.
A crowd of people in the stands of a soccer game in Berlin. They have unfurled a sign that spreads across the crowd that talks about the Millions Missing with M.E.
Protestor in red shirt holding a sign that reads "Millions are still sick."
A drone takes a photo of protestors in red shirts from above standing in the form of a massive heart.

THE IMPACT OF #MILLIONSMISSING

The #MillionsMissing movement has galvanized the community to fight for health equality for people with ME. The energy we display during our global protest transforms into #MEAction-supported coalitions of volunteers who work on advocacy projects throughout the year.

#MillionsMissing also serves as a great opportunity to educate the press about ME. We’ve told our story to the press 500 times over the course of the past eight protests, including in major news outlets like the BBC, CNN, US News & World Report, The New York Times and The Guardian.

Here are some of our past #MillionsMissing wins:

2016

Meeting with Assistant Secretary for Health, Karen DeSalvo.

2018

Meeting with director of the U.S. National Institutes of Health, Francis Collins, where we presented a strategic plan for advancing progress for ME.

2019

We went global: 100 cities across the world held #MillionsMissing demonstrations. Twelve MPs spoke or tweeted about ME in the U.K.

2020

We went virtual with the pandemic, with events in the U.S. and U.K. #MEAction hosted our first virtual choir. #MEAction UK and Scotland published “I got a Virus” video, warning the world about the impending Long COVID crisis.

2021

We hosted an incredible line-up of speakers from the community. #MEAction hosted its first ever Artists Salon featuring 53 artists from the ME community.

May, 2022

Was a force of creativity. Powerful speakers spoke out about the growing crisis of ME. The community flooded social media with their stories, reaching a total of 4.7 million people in May. #MEAction held a press conference to educate journalists about why ME must be at the forefront of the government’s response to Long COVID. We hosted our second artists salon, and community choir performance.

September, 2022

We protested in front of the White House, calling for President Biden to address the crisis of ME and Long COVID, which garnered national press attention. The community showed solidarity on social media from their beds.

May, 2023

We set up a massive display of 300 beds, covered in red blankets and adorned with personalized pillowcases, on the National Mall in Washington, DC. We held a press conference calling for an urgent response to the crisis of ME and Long COVID. The community sent in personalized pillowcases to represent their lives missing from ME.

May, 2024

We launched our #TreatME, TeachME campaign to educate clinicians and medical students about ME. Our teams hosted 20 medical medical education events across the U.S. and U.K. We had 421 clinicians take a Continuing Medical Education course about ME/CFS as part of the campaign. Meanwhile, the campaign precipitated thousands of new views for the Mayo Clinic Proceedings paper! And, our community shared stories about their own challenges of getting diagnosed. 

May, 2025

ME/CFS, Long COVID and other disability communities joined together at the U.S. Capitol on May 12th to send an SOS to Congress: “Save our Social Supports. Save our Science. Save our Society.” We called on Congress to protect core infrastructures supporting our communities: Medicaid, home care support, research funding and open science. Check out the livestream and read stories here.