We did it! This is what the #MillionsMissing Look Like.

It has been a big week, with over 100 public and virtual events happening across the world!

We are honored and grateful to be in this fight for health equality with you. We showed the world that we are the #MillionsMissing – that we will fight for the recognition, treatment, and compassion we deserve for people with myalgic encephalomyelitis (ME)!

You pulled off some of the biggest and most creative demonstrations in #MillionsMissing history! This is email is long (and the list of events reporting back is still growing). Thank you from the bottom of our hearts. Each and every one of you has our love and support. We will continue to fight on.


Cities across the United States showed its heart for ME in beautiful and moving #MillionsMissing demonstrations. Researchers and clinicians turned out to speak about the urgent need to address this crisis with real action. Members of Congress tweeted out their support for people with ME! 

A gathering of students took place in Bayamón, Puerto Rico. In New York City, Blue Bloods actress, Amy Carlson, and ME specialist, Susan Levine, attended the protest, and the NYS Department of Health Clinical Education Initiative tweeted out its support.

Boston staged a lie down in the Commons, and ME researcher and neuroscientist, Michael VanElzakker gave a rousing speech. Orlando rallied, and received a proclamation for ME from the governor, and the iconic Orlando Eye lit up blue for ME.

Tulsa, Oklahoma gathered to show its heart for ME! The group wore red t-shirts and formed a heart photo captured by an overhead drone. In Minneapolis, the Minnesota ME / CFS Alliance organized a rally, lit up a bridge blue in solidarity, and received several city proclamations for ME across the state.

Atlanta displayed giant balloons forming the number “5813” to indicate the number of people diagnosed and undiagnosed with ME in Cobb Country where the rally took place. Austin held a small, indoor rally in solidarity.

New York City


Bayamón, Puerto Rico

Orlando, Florida

Tulsa, Oklahoma




Tucson held an art auction benefiting ME, a popular folk band performed, and the mayor presented a proclamation. Denver displayed shoes on the steps of the capitol building, had live music, and invited two doctors who treat people with ME to speak. Rep. Scott Tipton for the state’s 3rd Congressional District tweeted out his support for the Millions Missing. Salt Lake City demonstrated at its state capitol with the event co-sponsored by the Bateman Horne Center, which conducts ME research.In California, San Francisco heard from the researchers and physicians caring for people with ME, including Ron Davis, PhD, Chris Armstrong, PhD, and Ami Mac, MD. Santa Monica held a rally where #MEAction co-founder, Jennifer Brea, spoke about the progress we’ve made in public and private funding, medical education and awareness since the very first #MillionsMissing in 2016.

“When you’re in the middle of it, it’s hard to tell what change looks like,” Brea said. “Well… this is what change looks like. And it’s coming faster and faster every year.”

San Diego gathered to raise awareness at an indoor mall. Portland, Oregon hosted a table at the Beaverton City Library and gave out #MillionsMissing bookmarks. Seattle gathered in a park, displaying 73 shoes with tags.

It was a joyous, emotional time and, along with it, people with ME are paying the price for the precious energy they gave to organize, support, attend and protest virtually.

What a pleasure it was to see all these beautiful people out in the world,” wrote Atlanta #MEAction activist, Jes Gordon, following the protest. “I felt so loved, understood, and connected. What joy! Today I am paying for it more than I expected. The post-exertional malaise is powerful with this illness. It feels as though someone infused my cells and tissues with lead, and it makes my muscles ache. But, it was worth it.” 


Denver, Colorado

Salt Lake City, Utah

San Francisco, CA | Photo by Rachel Podlishevsky

Los Angeles, CA




United Kingdom

Over 30 #MillionsMissing demonstrations took place in the UK – more protests than ever before in the UK, and many more joined virtually! The #MillionsMissing hashtag trended on Saturday. Twelve MPs spoke at demonstrations, or tweeted out their support. Take a minute to call, email or tweet your thanks to your MP! (View the list.) The support of so many MP’s is amazing! This is how we build a movement.

Carol Monaghan MP spoke about the importance of campaigning during the Glasgow demonstration: “I want to pay tribute to all the campaigners here. With enough pressure, governments are forced to put money into research.”

London, Southampton, Cardiff, Glasgow, Manchester, Nottingham, Sheffield, Leeds, Bristol, Norwich, Newquay, Shrewsbury and many other cities joined the global protest to demand funding for biomedical research into ME.

In London, a choir sang to honour those with ME, and moving testimonies and stories from people with ME were shared with all participants. Mass lie downs in solidarity of those suffering from severe ME took place across the country. In Sheffield, hundreds of pairs of empty shoes were lined up outside Sheffield city hall, and a bed representing the 25% of people that are bedbound or housebound was on display. In Southampton around 75 #MEAction volunteers and supporters attended the event and spoke to over 300 members of the public to raise awareness of the reality of living with ME.

The thousands that came together this week to support the #MillionsMissing in the UK will continue to demand funding for biomedical research, suspension of CBT and GET treatments, updated professional training and an end to unjustified child protection proceedings.







Glasgow | Photo by Wendy Milne




Louise Haigh MP spoke at Sheffield demonstration





Australia hosted several #MillionsMissing events throughout the country, including Sydney, Melbourne and Perth. Palm Cove hosted a screening of Unrest, and created beautiful #MilllionsMissing displays. Jenny Leong MP representing Newtown was so inspired after attending a demonstration that she went home and watched the documentary, Unrest!

Tokyo hosted a #MillionsMissing event where it promoted petitions aimed at parliament to speed up the funding of research for ME, and to show its support and solidarity for patients in Japan and worldwide. A small and mighty group demonstrated in Hong Kong this year!

New Zealand held a coordinated country-wide virtual protest.


Hong Kong


Palm Cove, Australia


Jenny Leong MP for Newtown tweets her support!





Canada organized a strongly coordinated #MillionsMissing movement this year with both public and virtual actions. Learn more.








#MillionsMissing events across Europe were both big and small, and very creative, as usual. From joining hands in Bilbao to a large concert in Berlin, the #MillionsMissing events in Europe raised the profile of ME. There were also countries that participated for the first time, which is thrilling! ME is being seen in more places.

Italy, France, Germany, Belgium, Spain, Sweden, Czech Republic, Switzerland, Denmark, Norway, and Finland all had visibility actions! We are sure there were even more virtual actions we have yet to see photos of. We are so proud of this work coming out of Europe!


Bilbao, Spain










Latin America and Africa

Mexico City and Santiago both organized #MillionsMissing demonstrations. #MEAction is so excited to see the #MillionsMissing movement growing strong in Latin America.

Virtual events took place in South Africa this week and two other South African events are coming up!


Mexico City





Press hits

#MillionsMissing events, advocacy efforts, and screenings got press attention around the world, including on BBC, in the National Pain Report, and more! News outlets reported on #MillionsMissing in the Czech Republic, China, and Canada. Dozens of local events got great press for #MillionsMissing, #MEAction, and the local movement including GlasgowLeeds, Hull, Manchester, and Bristol in the UK, and Michigan South Carolina and Wisconsin in the US.

#MEAction board member Ryan Prior wrote a thrilling piece for CNN announcing new hope for ME because of Dr. Ron Davis work.





Virtual Actions

Virtual Actions are the backbone of our work at #MEAction and for the #MillionsMissing. Hundreds of you advocated from your beds this week and it made all of the difference. You posted your photos using the #MillionsMissing hashtag, resulting in thousands of shares, impressions, likes, tweets, and reposts.

You joined the virtual call and connected with other people with ME. You created a groundswell of conversation online that spreads and builds our community and our reach.



Thank you!!

From all of us at #MEAction, thank you! You have done so much. You have so fought hard. Please, rest. Please, take care of yourself. We will keep fighting. We are all in this together.

In Solidarity,

Jennifer, Laurie, Ben, Jaime, Adriane, Erin, Espe, Holly and Hannah



1 thought on “We did it! This is what the #MillionsMissing Look Like.”

  1. The Seattle Event would very, very much like to be included here. I am very sorry we only got our pictures up on SmugMug a few hours ago. When I say “we” it’s actually just me doing all this, and I crashed so hard before we even finished the drive home, I couldn’t even turn my computer on until last night… and then found it was too late. I was heartbroken. If there’s any chance that we could be represented I, and everyone that attended or sent shoes and stories, would be so grateful. I understand it may not be possible, but I wanted to at least ask. Thank you for doing all this. The whole thing is amazing!

Comments are closed.

Latest News

Questions to Ask Prospective MPs About ME/CFS

In the next few weeks, candidates will be knocking on doors seeking votes for the upcoming UK Election. It’s important that candidates from all parties are made aware of the challenges facing people with ME and Long Covid. It can be a little daunting to be unprepared so here are some questions you might want

Read More »
red rectangle with the #MEAction Scotland logo on the left hand side and the words Impact Statement 2022-2023 on the right.

#MEAction Scotland publishes impact statement

#MEAction Scotland is pleased to publish our impact statement, which covers March 2022 to May 23. It reports on our work to campaign for effective support, create stronger advocates and raise awareness. As a small group of volunteers, it’s unfortunately not always possible to continually update on our activities as they happen, so the statement

Read More »
reddish rectangle image with different color stripes of red coming out at a diagonal from the center. In the center is the TeachMETreatME logo. The words celebrating an impactful campaign in white font underneath the logo.

#TeachMETreatME: Celebrating An Impactful Campaign

We are THRILLED to share the rolling successes of our #TeachMETreatME campaign with you, as we report back on the amazing medical education events that have taken place so far – with many more to come in the upcoming months! (And don’t miss the global #MillionsMissing events later in the article!) Over the past several

Read More »
Scroll to Top