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

#MEAction has organized 10 #MillionsMissing demonstrations since 2016 with hundreds of cities across the world demonstrating. Together, we are fighting for equitable research funding, clinical trials, medical education and public awareness for M.E.

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

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


#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.


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: