NEWS

As we embark on the new year, we are excited to share updates about #MEAction’s advocacy projects and community programs with you!

Back in September, #MEAction Georgia partnered with the CDC and Emory School of Nursing to host Voice of the Patient: A Panel Discussion with #MEAction Georgia.

This global #MEAction initiative aims to raise awareness among medical professionals of the challenges faced by ME/CFS and emphasise the need for healthcare education about this condition.

We are THRILLED to share the successes of our #TeachMETreatME campaign as we report back on the medical education events that have taken place so far.

Learn more about our campaign, the events, & how to get involved

#MEAction’s Jaime Seltzer has been selected for TIME100 Health 2024, TIME’s new annual list of 100 individuals who most influenced global health this year!

#MEAction is once again thrilled to share a new book, Invisible Illness: Coming of Age, Chronic Illness, and a Mother's Will to Survive, with you by author Lauren Saikkonen! This book is an autobiography that covers Lauren’s entire life, but heavily focuses on her battle with Ehlers-Danlos syndrome, ME, and fibromyalgia. You can purchase this book on Amazon-- get a copy here! Lauren has graciously offered to donate a portion of her proceeds to #MEAction for all books purchase

#MEAction is thrilled to share the incredible work our State Chapters have been up to over the past couple of months! They continue to amaze us daily with their dedication and hard work to bring awareness to the ME community. Read more about their success stories:California: • The University of California has added some disclaimers about the harm of exercise therapy in its Long COVID modules; however, further corrections are still in order. • We have continued successful mont

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

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

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

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

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

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

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.

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

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

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

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

As we ring in the new year, it is a wonderful time to reflect on how much #MEAction accomplished in a very busy and exciting 2022! There are so many wins to share, so we decided to narrow down the list to our TOP HITS!#MILLIONSMISSING 2022:• Bringing together the powerful Virtual #MillionsMissing Event in May that featured a wide range of diverse speakers and drew in a large audience.• LEVELING UP OUR ADVOCACY with an in-person protest for #MIllionMissing September outside th