Category: Community

#MillionsMissing Week is Here: #TeachMETreatME in Action!

We are excited to announce the kick-off of #MillionsMissing 2024 – our ongoing campaign to Teach ME and Treat ME by educating medical providers across our nation’s hospital systems and medical schools about myalgic encephalomyelitis (ME).  Throughout the spring, summer and fall, #MEAction teams are hosting 13 medical education events to encourage medical providers to

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#MEAction’s Jaime Seltzer Selected for TIME100 Health 2024

We are thrilled to share with you that Jaime Seltzer, #MEAction’s Scientific Director, has been selected for TIME100 Health 2024, TIME’s new annual list of 100 individuals who most influenced global health this year! This is a huge honor based on years of work fighting for equity for people with ME.  We intimately know the

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white rectangle with the words: Interview with Author Lauren Saikkonen in black font. There is an image of her book cover, Invisible Illness on the left hand side. And a photo of Lauren on the right hand side. Lauren is wearing a red sweater and is smiling at the camera.

Interview With Lauren Saikkonen – Author of Invisible Illness: Coming of Age, Chronic Illness, and a Mother’s Will to Survive

#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

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black rectangle image, the #NotJustFatigue logo is yellow lettering in a black box. On the right hand side the words Community member launching a new website today. website www.notjustfantigue.com at the bottom and the #MEAction logo in the bottom right hand corner.

#NotJustFatigue – Community Member Launching A New Website Today!

#MEAction is excited to announce community member, Elizabeth Ansell, created a new website, #NotJustFatigue, launching today, March 1, 2024! This website was created with the hopes it will help describe ME to those who do not know anything about ME. It is a site for people to share with their family and friends. #MEAction is

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a dark plum square image with a brownish/purple square in the middle. The #MEAction logo is at the top center. the words: black ME voices: q&a with Teona Studemire are in a fancy white font. Black history month is at the bottom of the square surrounded by two black stars.

 Black ME Voices: Q&A with Teona Studemire

With it being Black History Month, it was crucial to me to make sure we spotlighted someone from the ME/CFS and Long COVID community who is Black. Being Black and disabled is an entirely different experience. Not only do we deal with ableism, but we also deal with racism, especially medical racism. According to the

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on a red sparkly rectangle image. The words "#MEAction's Volunteer Program Revamped!" are written in an arcade/game font. Sign-Up Today! The #MEAction logo in the bottom right corner

#MEAction’s Volunteer Program Revamped

Exciting news: #MEAction revamped our volunteer program for the new year! We are honored to have wonderful volunteers including people with ME, Long Covid, and other associated conditions as well as our caregivers, allies, and wider communities. Volunteering with #MEAction can and does make all the difference. We invite you to join our program! Our

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#MEAction Writers Inspired by WGI Workshops

Last fall, #MEAction partnered with the Writers Guild Initiative (WGI) to offer writing workshops to twenty-five community members. #MEAction believed this partnership was beneficial to our community because self expression in the disability community is essential and writing allows us to get our thoughts and emotions onto paper. #MEAction recognizes writing as one of the

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I picture of the Health and Human Services Plaque and on the right hand side in a red box, the words, #MEAction Meets with the Office of Long COVID Research and Practice

#MEAction Meets with the Office of Long COVID Research and Practice

On January 17th, 2024, #MEAction convened a constructive meeting with Dr. Ian Simon, the newly appointed director of the Office of Long COVID Research and Practice within the U.S. Department of Health and Human Services (HHS). The Office of Long COVID Research and Practice staff demonstrated a willingness to understand the connection between ME and

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Image of Beth smiling at the camera is at the center of the image. The words Beth Mazur and Memorial Service underneath. There are green and blue foilage in the corners, plus the #MEAction Logo in the top right corner.

Beth Mazur — Memorial Service and Obituary

As many of you know, we lost a wonderful person recently. Beth Mazur passed away after battling ME for 15 years. She was the cofounder of #MEAction and a selfless beacon of hope and light for so many in our community. She demonstrated an unwavering commitment to the cause. We could not be more devastated. 

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