NEWS

Expanded telehealth coverage for Medicare is set to expire at the end of this year, December 31st!

When challenges come our way, this community has shown us over and over again that we are stronger together.

We have come to the time of year where we focus on what we are thankful for and what has made a difference in our lives.

Join #MEAction for our final very modified movement class of the year on Friday, November 15th at 11am PST/2pm EST/7pm GMT.

The Pillow Writers Anthology offers selected writings by the writing group of the same name. Issue 1, Near-Life Experiences, is available now.

#MEAction has just been awarded a 3-year grant by the Long COVID Program of the Minnesota Department of Health (MDH) to address the impacts of Long COVID, ME/CFS, and related conditions.

The Severe ME Artists Project is back for 2024! Submissions are now open until July 25th.

In honor of Pride Month, #MEAction is sharing a heartfelt message from our board member, Jennifer England.

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

#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 and Body Politic* are excited to collaborate with Home Test To Treat to share their critically important resource! Acute COVID-19 treatment and testing is unfortunately becoming harder and harder to access with the U.S. government public health emergency having been declared ended. The Home Test To Treat pilot program is a way to fill that gap in an accessible and equitable way. Home Test To Treat is helping to address some of the serious socioeconomic/healthcare ac

#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 listed on the website as an organization for people to support financially for ongoing research and advocacy.Elizabeth provided us with a short interview

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 Journal of Women's Health, “Black women continue to experience excess mortality relative to other U.S. women, including—despite overall improvements among Black wo

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 new volunteer program allows you to be put into a working group that uses your skills. Currently, we are offering working groups t

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 ways we as a community are able to share our truths to create change and build awareness. There is power

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 Long COVID. As articulated during the meeting, a fundamental principle guiding their work is the mantra, “nothing about us without

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. Beth put her whole self into the fight for equity for people with ME. Every person with ME mattered more to Beth than you will ever know. We join the family in inviting you

We are sharing some sad news. Please put your health first. Content warning for sharing the loss of a community member.

Two years ago, #MEAction embarked on an ambitious project, the Chronic Illness Survey Adventure! The Adventure is a survey to deeply examine the symptoms experienced by people with diseases that are triggered or unmasked by infection, including ME, POTS, hEDS, MCAS, and Long COVID. At the end of this year, we will close the Adventure with over 1.5 million data points illustrating the connections between these diseases’ symptom presentation, and what makes each disease– and e

A year ago, we were proud to announce that #MEAction and Mayo Clinic Rochester had won a grant for diagnostic improvement, with Ravindra Ganesh, and Stephanie Grach, and I on the grant as co-investigators. Our project, Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Implementation of an Enhanced Education Protocol and Care Process Model has so far produced: • Updates to the Mayo Clinic public-facing page on ME/CFS • A new diagnostic