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Thank you for sharing your stories, for illustrating our common thread so that our governments, healthcare systems, and other institutions can respond fully to the crisis of ME, Long COVID and other complex, chronic conditions. As Omar Wasow said in his #MillionsMissing speech, “We are at the cusp of newfound power.”
“That has the potential to truly bring dignity, funding equality, respect in hospitals, respect from families.”
We have an important job to do. You are at the heart of it, and so is our advocacy work. During and leading up to #MillionsMissing, there has been enormous progress in the US, UK, and around the world- and that is due to hard work, diligence and connecting stories to the broader issues that people with ME and people with other under-resourced, chronic, complex conditions face.
Ed Yong, writer at the Atlantic, told us at our #MillionsMissing Global Virtual Event that your heroic acts of telling your stories have given him the ability to amplify them in the press. In his first piece covering the pandemic, he drew the connection between Long COVID and ME. Ed Yong’s #MillionsMissing speech illustrated how important telling your story is to make sure those with lived experience are heard and valued.
“None of this would have been possible if the community had not spoken up for themselves. Your work allowed me to do my work in so many different ways…It is crucially important for people like you to keep telling your stories. And for people like me to listen to them.”
And you did just that. You elevated #MillionsMissing 2022 by the quality of the stories.
#MillionsMissing Global Event
On May 12th, the #MillionsMissing Global Virtual Event had over 900 RSVPS and due to time-zones and pacing, we had almost 400 people attend live! Now is your opportunity to watch the event (warning it is long, but worth it) in however many segments allows you to pace.
Our Featured Speakers
Rebecca Cokley, Program Officer, U.S. Disability Rights at Ford Foundation
Ed Yong, Science Writer at The Atlantic
Omar Wasow, Professor and Activist
In addition, here are more powerhouses who will be sharing their story with us:
Jill Hinson, #MEAction Co-Chair of #MEAction Board
JD Davids, #MEAction Boardmember and Activist
Netia McCray, author/speaker/professor/ host
Ashanti Daniel, ME Activist
Mia Mingus, Disability Justice Advocate
Terri Wilder, ME and HIV Activist
Karima Rahman, #MEAction Scotland Volunteer
Adam Lowe, #MEAction UK Volunteer
Rivka Solomon, ME Activist
Jaime Seltzer, #MEAction’s Director of Scientific & Medical Outreach
Adriane Tillman, #MEAction’s Public Relations Manager
Ben HsuBorger, #MEAction’s U.S Advocacy Director
Jennifer Curtin, MD, physician at Center for Complex Diseases
Angela Meriquez Vázquez, President of Body Politic
Karyn Bishof, President & Founder of COVID-19 Longhaulers Advocacy Project
Lisa McCorkell, Patient-Led Research Collaborative
Erica Hayes, Long Covid Families
Cynthia Adinig, ME and Long COVID advocate
Below are a few highlights of #MillionsMissing storytelling. We could not begin to share all of it in an email, but keep checking our Facebook, Youtube, Instagram, and Twitter. And keep sharing. We need to keep amplifying our message. It is making strides in our advocacy and as you heard from Ed Yong, in the amplification of your stories by the press.
You reached out to local press, took our storytelling and photography workshops, joined the #MillionsMissing Global Virtual Event (almost 400 of you joined live), registered for the September 2022 live protest, bought t-shirts, joined the virtual choir, watched Not Going Quietly featuring Ady Barkan and the panel discussion, took local actions, held events, and so much more.
#MillionsMissing Stories & Art
You shared stories, artwork, photos and videos in a powerful display on social media. We are only sharing a small sampling here but we encourage you to search #MillionsMissing on social media and keep sharing! Your #MillionsMissing stories and posts on Facebook, Instagram, Twitter, and Youtube reached over 725,000 people! That is no small feat. And the reach has only kept growing – #MillionsMissing for the month of May had an estimated social reach of 4,760,729.
Second Annual #MillionsMissing Artist Salon
You represented, showed your shirts and helped get the word out about ME!
#MillionsMissing Virtual Choir
Once again we had a #MillionsMissing Virtual Choir. You let your True Colors shine through!
#MillionsMissing Press Conference
#MEAction held a press conference leading up to #MillionsMissing which featured Linda Tannenbaum from Open Medicine Foundation; Chimére Smith, Long COVID Advocate; Ben HsuBorger, US Advocacy Director and Dr. Jennifer Curtin, Clinician. This press conference was attended by Medscape and had special requests from Arizona Daily Star, USA Today, and Buzzfeed. Our press work has been a major priority for #MEAction and it takes hosting events like this to get the press to stay engaged and when there is a relevant story, they have context for the work and can easily report vetted facts. Click on the link below to watch the event.
#MillionsMissing Local Events
We are just over the 50% mark on our #MillionsMissing fundraiser. Thank you for hosting events, for donating, for sharing our emails. Raising money is a large part of raising awareness because we need your support to keep doing our work and others see #MEAction as something worth valuing- and that is how we continue to build our movement. You can still create a fundraiser to share with friends and family or donating directly to our #MillionsMissing fundraiser.
#MillionsMissing Press & Actions
You got featured in the press either through letters to the editors or through your amazing advocacy work like Art Mirin in California and Jaime Seltzer who is quoted here.
#MEAction Maryland and Billy Hanlon in Minnesota got proclamations in their local states! What a great step in local advocacy!
While this was happening and leading up to #MillionsMissing, we have been meeting with HHS, Key hospitals, Department of Labor, and urged you to take action against the CDC. Many of you participated in Advocacy Day with Solve ME, of which we were a partner. In the UK, huge strides are being taken to approach ME, as promised by Sajid Javid. #MEAction UK has fought long and hard for improved NICE guideline and much work on implementation is still underway. Internationally, World ME Day, of which #MEAction is a proud member, was asking everyone to #LearnFromME and shared a video. Japan ME association is fighting against harmful stigma by sharing information, Retha Viviers is fighting to continue the work and support necessary for people in South Africa, Canadians are getting featured in the press and aiming to change the narrative. #MEAction has been working hard to encourage those with Long COVID to Stop. Rest. Pace. and we heard from those with Long COVID this #MillionsMissing that this advice eased their suffering. Our Long COVID allies at Patient-Led Resource Collaborative, Body Politic, Back CoVid-19 Survivors, COVID-19 Longhauler Advocacy Project, and so many more are doing wonderful work to tell narratives that change minds, demand research and care that supports what they need, and for the inclusion of ME into the Long COVID response.
But we want to take this moment now to say thank you. Your participation was invaluable. For those not able to participate, we understand you, support you, and send love to you. It is all of us together, when we can and where we can, that will continue to drive progress.
You shared, you amplified our message, and got the word out. We will be using this momentum to move forward real change. We could not possibly express in one email the magnitude of the effort and our gratitude to you.
As #MEAction is thrilled to provide a new volunteer engagement program run by Chimére Smith and Terri Wilder, there will be new opportunities to stay involved in our advocacy, storytelling, press reach, and protest. We hope you continue to join us.
From all of us at #MEAction, thank you! You have done so much. You have fought so hard. Please, rest. Please, take care of yourself. You are so loved and you are not alone.
We will keep fighting. We are all in this together.