*We added an update below. Videos like the “I got a virus” video from #MEAction UK and #MEAction Scotland were viewed over 90k times on multiple platforms. Better than originally reported!

Dear Friends,

You are amazing.

You made #MillionsMissing impactful, powerful, and moving. 

This virtual year no doubt had it’s challenges, but it was beautiful too. You reached hundreds of thousands of people online, all across the world, and that is no easy feat. 

You told your stories, shared your art, amplified #MEAction articles and press releases,  and you made a difference. Reach and awareness lead to change. This #MillionsMissing, you mobilized the community, and got the attention of influential celebrities, politicians, and individuals all over the world. Lastly, #MillionsMissing can be an invaluable time to reach those who have not been diagnosed and are alone and scared. So we know your stories and art brought hope to many.

We know the stakes are high. You deserve urgent action, urgent treatments, and urgent care. It is never easy watching progress move slowly, and we promise you, we are using the momentum of this moment to create change. 

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.

Below are some highlights of #MillionsMissing. 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. Particularly now, we know that COVID-19 will lead to even more cases of ME. The world needs us (and we need the world) to keep sharing those stories so that the research, funding, treatment and care begins to happens now.  (Warning: This article is long, but we wanted to include as much as possible from #MillionsMissing 2020).

First Ever #MillionsMissing Virtual Choir! 

We are so grateful to everyone who participated in our first ever virtual choir for #MillionsMissing! It was hard work and these talented singers are truly inspiring (click on the image below). 

#MillionsMissing Speaking Events 

On May 12th, we had two official #MillionsMissing speaking events with inspiring speakers, talented artists, activists, and volunteers.

The US and UK events had a truly impressive lineup of speakers. At the US Event, people with ME, caregivers, doctors, and advocates talked about the neglect of this disease and the strength in finding one another. Dr. Ron Davis and Dr. Nancy Klimas talked about how COVID-19 is a watershed moment for gaining recognition for ME. Isiah serenaded us with a beautiful song that he sings for his mother who has ME. Ashanti, a former nurse who lost her career to ME, spoke about how we must do better for communities of color, who are even more under-diagnosed and disbelieved.   

At the UK event, Professor Chris Ponting and Dr. Nina Muirhead talked about the possibility of more people developing ME after suffering COVID-19, and how governments and institutions need to invest in biomedical research. Stuart Murdoch, from Belle and Sebastian, gave a heartfelt testimony of his experience with ME, while Carol Monaghan, MP updated us on her progress supporting people with ME in Parliament. Many more people joined us for this call, including people with ME, advocates, carers and allies.

You Shared Your Stories!

You bravely told your story on Facebook, Twitter, Instagram, Youtube, through the press, and blog posts. Over 100,000 people were reached through your efforts of posting and engaging. We can never underestimate how important this is.

People with severe ME shared a powerful visual representation. It was liked and shared thousands of times. In all of our activism, it is crucially important to be reminded of those of us who cannot leave bed. We honor them today.

While we know that COVID-19 will have consequences in the ME world, the rest of the world will have to catch up to that idea. So your stories will make the difference in how we break into the conversation happening in the public health world. 

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Our Videos Got Over 90k Views Across Platforms!

Our #MillionsMissing videos garnered lots of attention! Musicians like Stuart Murdoch played live on Facebook, attracting over 25k viewers. #MEAction UK and #MEAction Scotland together produced a video, “I got a Virus. I didn’t die, but I never recovered” that was viewed and shared over 90k times across multiple platforms. This video is so impressive and so important to share as it conveys the real threat that more people are likely to get ME after COVID-19. 

Also check out this thank you video created to thank all #MEAction activists, state groups, and volunteers. Plus, don’t miss this video about Florence Nightingale!

You Shared Your Art 

Your art is so engaging and so powerful. You reached new audiences through your visual art, song, poems, and writing. You shared songs and poems that continue to have reach and to inspire action! Thank you, thank you, thank you.

Celebrities, Influencers, Press, Allies and Musical Guests#MillionsMissing got attention across the globe. Politicians like Carol Monaghan, MP ,United States Senator Ed Markey, and State Senator Brad Hoylman all tweeted their support of #MillionsMissing.  Celebrities like Miranda Hart showed up on Twitter and Instagram, getting over 15,000 likes for her posts on ME. Star Trek Discovery star, Mary Chieffo, shared her support of #MillionsMissing on Instagram, with one fan expressing her own journey with ME.  Allies from the fibromyalgia community showed up on social media to show their solidarity and support.  Vogue Magazine retweeted an article of Unrest and showed support for all of the #MillionsMissing. Organizers in Sheffield, UK got press attention as well!  The musical guests were so so motivating! Stuart Murdoch, Kaeley Pruitt-Hamm and Jake Sidwell performed on Facebook Live for viewers, which had viewers from across the world.  ME organizations and other allied organizations shared our message. Thank you, thank you!!

You showed off your #MillionsMissing t-shirts to get the attention you deserve!  It not too late to buy one!

Thank You!!

You shared, you amplified our message, and got the word out. For those in the UK, you reached out to your MPs. In Scotland, you reached out to your MSPs. May 12th is not the last day of action for 2020. We will be using this momentum to move forward real change.

As we anticipate that more people will be affected with ME because of this pandemic, we want our governments to know that a strategic response must  include a focus on the long-term impacts this virus will have on its patients and therefore a pathway for people with ME to get better.

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. We will keep fighting. We are all in this together. 

In Solidarity,

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