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 exist. Thousands of people sent in shoes they could no longer use: work shoes, running shoes, ballet shoes, dancing shoes, a pair of fins. This year, we asked for your pillowcases to decorate the hundreds of beds set up on the National Mall. You took those blank pillowcases and turned them into powerful stories.

#MillionsMissing began in 2016 with one person’s desire to protest for ME in Washington, D.C.  Stacy Hodges brought her idea to #MEAction, and #MillionsMissing exploded from there. Two years later, 100 cities held #MillionsMissing demonstrations for ME across the world.    

When the pandemic hit, we pivoted. Our community was uniquely positioned to see what was coming. We began to sound the alarm, to warn others, educate them and let them know they are not alone. We stepped into this moment in history and we kept demanding to be heard and seen. Not only for ourselves, but also for the millions of people whose lives would be turned upside down in a way we were all too familiar with. Not again. No one else. We do not want to grow our community like this. 

In the fall of 2022, we protested in front of the White House demanding that the Biden administration take urgent action for ME/CFS and Long COVID. We blocked the streets and risked arrest to make our demands loud and clear.  

We held amazing, online gatherings and events. We are regularly in the national press telling the story of M.E. But we needed more. Back to Washington, D.C. we went. 

This time, we went to the National Mall, right beneath the Washington Monument, to demand the world see us. We covered the lawn with 300 beds draped with red blankets and pillowcases made by our community, bringing those stories from dark, lonely rooms to the light. We are here. We are still sick. We are still fighting. We are demanding action. 

The images of those red beds all over the Mall were powerful. They are still showing up in the press and on social media. We need the images to live on and to grow and to find their way into hearts and minds across the world but, most importantly, we want our story of M.E. to be told alongside those photos. 

We have given the story of #MillionsMissing a home. Where your pillowcase can be displayed and your story told. Where your story, ties to my story, which ties to another’s story and so on until our one collective quilt of stories come together. 

We are hosting a preview party to share the new, virtual Home of the #MillionsMissing on Sunday, September 24th, 12 pm PT/ 3 pm ET/ 8 pm BST