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“#MillionsMissing is our drumbeat”
RSVP TODAY: We are hosting a preview party for the new, virtual Home of the #MillionsMissing this Sunday, September 24th, at 12 pm PT/ 3 pm ET/ 8 pm BST!We have always had to be creative in telling Our Story - the story of M.E. - to the world since so many of us cannot protest in the streets. How do we shine a light into our darkened rooms and demand the world’s attention? We started with shoes. Send in your shoes with a tag to tell your story. We will show the world that you
Sep 20, 20233 min read


#MEAction’s Summer Work Heats Up
Halfway through summer, we have so much to report about our immense, day-to-day work advocating for M.E., for you, and for each other. On the medical front, our ongoing, grant-funded project with Mayo Clinic Rochester continues to transform medical education at Mayo. Together, we have updated the ME/CFS homepage, written a Concise Clinical Review article that will debut in Mayo Clinic Proceedings with an attendant CME, and created a new diagnostic and treatment algorithm on A
Aug 16, 20233 min read


"Bed activism" at the Washington Monument & A Politics of Care
I’ve been involved in planning many #MillionsMissing actions during my time with #MEAction, but for me, protesting at the Washington Monument this past May 12th was a different—even surreal—experience. The installation of cots was so large that I could see people coming across the mall to see what it was. I would tell them that the beds symbolized the millions missing due to ME and Long COVID, but my favorite part was explaining the personally decorated pillowcases with custo
Jun 30, 20234 min read


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
Jun 28, 20233 min read


Why We Keep Telling the Story of ME to the Press
Our press work continues to drum a strong beat as we tell the story of ME everyday to the media. We will continue to fight for our community’s decades of expertise living with, treating and researching ME to be heard, and integrated into our government’s Long COVID response. We refused to be erased from the story, or from the response to post-infectious disease. Over the past several months, we have been busy telling our story about the #MillionsMissing to the press. We’ve sp
Jun 6, 20233 min read


#MillionsMissing 2023: Scotland calls for healthcare education
This year, #MEAction Scotland’s #MillionsMissing campaign focussed on raising awareness of the reality of living with ME and called for education and training for healthcare professionals to improve support for people with ME across Scotland.Ahead of ME Awareness week, we put out a call, alongside #MEAction UK, to ask members of the ME community to join our digital campaign. The campaign asked people to share photos based on two ideas – their view of living with ME or the spa
May 25, 20232 min read


Long COVID & ME/CFS Communities to Demonstrate TODAY on National Mall
Washington, DC – The ME/CFS and Long COVID communities will demonstrate today with the installation of 300 cots on the National Mall to represent the millions of people missing from their lives due to post-infectious disease. We are the #MillionsMissing.
May 12, 20236 min read


Creative Fundraising Initiatives for #MEAction
At #MEAction, we work to advocate for and with people with ME. As a small and growing non-profit, individuals who create and develop fundraisers for #MEAction makes a HUGE difference for the organization. Here are some examples of individuals and groups who are creating their own fundraising initiatives in support of #MEAction. 1. Starting Your Own Fundraiser Through #MEAction’s Website! People with ME, as well as caregivers have started their own fundraisers through #MEActi
May 1, 20233 min read


#MEAction Scotland’s plans for #MillionsMissing
This year, #MEAction Scotland will be doing smaller, more focused activities for #MillionsMissing than previous years, and we are asking the community to take part in the digital campaign, rather than joining us in person. We also need people to email their MSPs, which there is information about below.Volunteers are planning two main activities during ME Awareness Week in May.Parliamentary event for MSPs - 9th MayFollowing the successful debate in the Scottish Parliament in F
Apr 20, 20233 min read


Join the UK and Scotland’s digital campaign this #MillionsMissing
May is nearly here and that means so is ME Awareness Week and #MillionsMissing! This year, #MEAction Scotland and #MEAction UK are returning to the central theme of #MillionsMissing - drawing attention to the people missing from their previous lives and wider society because of ME.Most people don’t understand how widespread ME is, or that so many in our community have been ill for decades. We want to flood social media with powerful images that show the reality of life with M
Apr 14, 20233 min read


Moments that Warmed Our Hearts
This community is at the heart of everything we do. With this being a centering foundation for the work that we do, it is no coincidence that we have all experienced moments that shine a light on how beautiful and heartwarming this community and our work can be! This Valentine’s Day we asked our staff to share moments that have warmed their hearts:A moment that warmed my heart was witnessing the community coming together at the September 2022 #MillionsMissing Protest. People
Feb 14, 20233 min read


Facets of ME: Loneliness
Welcome to April’s #FacetsOfME where we will focus on loneliness and how this illness affects our need for connection and relationships.
Apr 8, 202218 min read


Equip yourself to fight disinformation!
Over the last many months, social media platforms like Twitter, Facebook, and YouTube have been flooded with disinformation about COVID-19. We wanted to make you aware of the problem, equip you with tools for how to recognize and respond to disinformation, and enlist your help keeping our community safe. According to numerous reports , much of this disinformation comes from organized campaigns by domestic groups or foreign governments. They rely on a mix of fake acco
May 9, 20202 min read
Welcome Jaime Seltzer to the #MEAction Team – Director of Scientific and Medical Outreach
We're thrilled to welcome Jaime Seltzer as our Director of Scientific and Medical Outreach.
Jun 11, 20182 min read
'Unrest' at the Scottish Parliament
The Time for Unrest event at the Scottish Parliament on 30 th January was an opportunity to raise awareness of Myalgic Encephalomyelitis...
Feb 7, 20186 min read
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