#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
#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
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
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
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
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
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.
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
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
