Staff Share Their First-Hand Experiences from #MillionsMissing 2023

While we are busy working to create a new online experience to highlight all the images and speeches from #MillionsMissing 2023 at the Washington Monument, we wanted to share with you some first-hand, touching experiences from the staff who were there.

Each #MillionsMissing has had something special to offer and this year’s surpassed expectations with a brand new art installation with powerful visuals to represent the millions missing.We hope you enjoy reading what our staff has to share.


Shalida Dobbins
Activist and Volunteer Coordinator
Being surrounded by a large disabled community made me feel right at home and so grateful for such a welcoming community. Seeing the cots was absolutely breathtaking, knowing that people poured their souls and energy into creating works of art will always amaze me. I don’t think there was a dry eye during the press conference. It’s so important to see and hear the stories of those with ME and long covid. Having an installation is so important because it forces able bodied people to truly see the pain these diseases have caused patients and caregivers. Seeing the cots in front of the Washington Monument made me realize why I’m so grateful to be a part of an organization that is making sure ME is not ignored. Knowing that our community came together to create such a beautiful and powerful installation speaks volumes on what the future looks like for us all.

Jaime Seltzer
Director of Scientific and Medical Outreach
Coming up on the display from my Uber was a beautiful and surreal moment.  You could see the beds from the street!  Walking up and down the lines of 300 cots and seeing how many of them had their own personalized pillowcase was a moment of intense connection for me.  Seeing everyone’s art, their own stories in their own words and images– it highlighted the voice of every individual, while vividly evoking our collective story and our collective power.

The sun was intense, and we’d already ‘worked hard’ to be on-site in DC. After my speech, I tried to keep moving gently but eventually had to lie down on the grass. Members of my community held an umbrella over my head, brought me ice water, and Ben leant me his motorized wheelchair to get off the green. I was surprised by the relief and the grief this stirred, because community care isn’t complicated but it’s still rare. It was bittersweet, because it underscored how far we still have to go with outreach in general, and medical education in particular.

Laurie Jones
Executive Director
I felt extremely emotional witnessing all of the pillowcases lined up in front of the monument and grateful to all of the passersby asking questions and learning from the stories. It was a great reminder that putting stories into the public has an impact and having an emotional experience drives people to want to support the movement. 

All of these experiences are the result of years of hard work by both staff and our community. And there is still so much more to do to bring the attention and funding we deserve. In order to continue this fight, #MEAction needs your help financially. If you are able to give to support our current fundraising campaign, we would really appreciate it. We only have a few more days left of this campaign and every donation will make a difference. 

Also, stay tuned for later this week, when we will be sharing Ben HsuBorger’s experience of attending this year’s #MillionsMissing. It is heartfelt and not to be missed.


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