About

#MillionsMissing is a global campaign for myalgic encephalomyelitis (ME) health equality. We demonstrate around the world for equitable research funding, clinical trials, medical education and public awareness for ME.

ME (often referred to as ME/CFS) is a systemic neuroimmune disease characterized by post-exertional malaise, an exacerbation of symptoms following ordinary physical or cognitive activity with prolonged recovery that may result in a permanent decrease in functioning. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound and an estimated 75% unable to work. ME affects 15 to 30 million women, men and children around the world. Learn more.

Why we call ourselves the Millions Missing 

Unable to work, socialize, or appear in the public space, we are missing important parts of our lives. We are missing careers, missing time spent with family, and, for the most severe, we are missing ordinary moments like going out in the sun, reading a book and socializing with a friend.

ME also remains one of the most underfunded diseases in comparison to its prevalence and health-related quality of life. Millions of dollars are missing from government-funded research. 

To compound the problem, very few doctors are educated about ME, despite the fact that it is as prevalent or more prevalent as major other diseases, and often carriers a higher disease burden. Millions of doctors are missing the medical education they need to diagnose and care for people with ME. (In the US, for example, only 6 percent of medical schools currently teach about ME, and there are only 12 practicing specialists across the country – many nearing retirement age. And yet, there are more than 250,000 people with ME who are housebound or bedbound in the US alone.)  

How #MillionsMissing was born

The first global #MillionsMissing protest took place in May, 2016. An activist from North Carolina grew so frustrated by the lack of research funding and medical education for ME that she decided to organize a demonstration in Washington, DC. She approached #MEAction about helping to organize the protest, which led to people with ME organizing protests around the world. 

#MEAction has since organized five global protests in the past three years. This past May, 2019, an astounding 100-plus cities and virtual protests took place around the world.

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 250 times over the course of the past five protests, including in major news outlets like the BBC, CNN, US News & World Report, The Guardian and Marie Claire. 

We are also buoyed by direct outcomes. We cheered when U.S. Senator John McCain tweeted out his support for the #MillionsMissing in 2016, sparking a three-year process by our Congressional team that led to Congressional resolutions for ME going into effect in May, 2019. We were thrilled by the 12 members of Parliament who spoke at demonstrations or tweeted out their support for #MillionsMissing 2019. In the US, protests have also directly led to meetings with key health officials, including: 

  • 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. (Read about the meeting here.)
  • 2016 meeting with Assistant Secretary for Health, Karen DeSalvo. (Read about the meeting here.)

Why the imagery of shoes 

Since 25% of people with ME are bedbound or housebound, and many more could not stand in protest for hours without experiencing severe and prolonged symptoms, members of our community use their shoes to show where they would be standing if only they could attend the demonstration in person. 

The shoes are also used to represent what people are missing from their lives due to ME. People with ME have sent in dress shoes no longer needed for work, hiking and dance shoes for absent hobbies, small sneakers from children missing so much of their childhoods. Tags are attached to the shoes explaining what the person is missing due to ME, or in remembrance of someone who has died from ME.  

The community also joins the #MillionsMissing movement from home on social media, displaying photos of shoes to represent what ME has stolen from their lives.