Welcome to the #MillionsMissing
Virtual Exhibit

On May 12th, #MEAction set up 300 red-draped cots on the Mall beneath the nation’s iconic Washington Monument in demonstration of the millions of people living with myalgic encephalomyelitis – also known as chronic fatigue syndrome or ME/CFS – and Long COVID.

The ME/CFS community has quadrupled with the arrival of the pandemic to an estimated 9 million people in the U.S. – and counting! ME/CFS is a severe disease most commonly triggered by an infection.

We invite you to “walk through” this virtual exhibit with us, and experience this mass demonstration for ME/CFS and Long COVID on our nation’s Mall.

The video encapsulates our demonstration on the Mall with photos of the 300 red cots, images of the handmade pillowcases and clips of speakers during the press conference.   

Across the country, our communities sent in handmade pillowcases to display on the cots, sharing their story of life with ME/CFS and Long COVID, and hundreds took to social media to call for action. #MEAction held a press conference in front of the red cots to call on the government to TAKE URGENT ACTION.

A group of eight people wearing red shirts in front of the Washington National Monument

“Every one of those numbers has a name, and every name is at the core of a story of profound loss!” said Jaime Seltzer, #MEAction Director of Scientific and Medical Outreach, referring to the estimated 9 million with ME/CFS.

Jaime Seltzer

An image of cots with red blankets that say Still Sick Still Fighting. Behind is the Washington National Monument
A black pillowcase with a stick figure drawing of a person looking in a mirror. The words Emily missing 16 years @hope4pwme
A white pillowcase with the words We want our lives back #millionsmissing
A black woman wearing a red shirt with short hair standing at a podium speaking into a mic
A white pillowcase with an embroidered heart and an embroidered fist
Multiple cots on green grass with red blankets and white pillows with the Washington National Monument behind

We ask you to fathom how the U.S. government was so unprepared for the pandemic’s explosion of ME/CFS. Our government has willfully neglected this disease for decades, ignoring the patient communities’ insistent pleas for investment into the disease. Now, we are paying the price with Long COVID.