#MillionsMissing
History
#MillionsMissing is a global movement calling for justice for people with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome or ME/CFS.
#MEAction has organized 10 global #MillionsMissing demonstrations, beginning with one advocate’s dream to protest in Washington, DC in 2016. Hundreds of cities across the world have held #MillionsMissing demonstrations from across the U.S, U.K. and Europe to Mexico, Chile, Japan, South Africa and Australia. Together, we are demonstrating for equitable research funding, clinical trials, medical education and public awareness for ME.
In 2022, we protested in front of the White House calling for the Biden administration to address the pandemic’s burgeoning crisis of ME, which has quadrupled the number of people with ME in the U.S. to an estimated 9 million. This past May, #MEAction set up a massive display of 300 beds in front of the Washington Monument, adorned with red blankets and personalized pillowcases, to call attention to the crisis of ME.
Scotland #MillionsMissing, 2019 White House #MillionsMissing protest, 2022The Mall #MillionsMissing, 2023Tokyo #MillionsMissing, 2018Berlin #MillionsMissing, 2019#MillionsMissing Southhampton, UK
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Why We Call Ourselves the #MillionsMissing
#MillionsMissing was coined to represent the millions of people missing from their lives due to ME, who are missing from their careers, missing time spent with family and friends, who are 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 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:
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2016 meeting with Assistant Secretary for Health, Karen DeSalvo.
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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 went global: 100 cities across the world held #MillionsMissing demonstrations. Twelve MPs spoke or tweeted about ME in the U.K.
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2020 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 was virtual again, and #MEAction hosted its first ever Artists Salon.
- May, 2022 was a force of creativity. Powerful speakers spoke out about the growing crisis of ME. The community showed up on social media to tell 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.
- In Sept. 2022, we took our protest to the White House, calling for Biden to address the crisis of ME and Long COVID, which garnered national press attention. The community protested on social media from their beds.
- In May, 2023, we set up 300 beds on the national mall, and 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.
