NEWS

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

Have you registered yet to join us this Wednesday, December 6th at 4pm ET / 1pm PT for a community presentation introducing the Canary Corps program?Ahead of Wednesday’s event we wanted to share with you Alison’s story. Alison Sbrana will be co-presenting this event, and much of the design of Canary Corps has been shaped by both her professional and lived experience. Her story is a sneak peek of what’s gone into the making of Canary Corps.The purpose of Wednesday’s event is t

I’ve got exciting news to share!In early 2024, #MEAction will launch a new grassroots, peer-run program in the United States to help people with ME, Long COVID, and other infection-associated chronic illnesses find and access local services and support for people with disabilities.This will be an innovative and radical program that is run by, and built for, our sick and disabled community. We call it: Canary Corps.Our community knows well what it’s like to be the “canaries in

Welcome to the final #FacetsOfME for 2022, where we focus on centering ME during the holidays!

Post-viral conditions like ME/CFS provide guidance for estimating the economic impact of Long COVID.

Check out these tips on traveling with ME in this month's #FacetsofME feature.

#MEAction has been hard at work continuing to advocate to the Department of Health and Human Services (HHS) on behalf of people with ME and Long COVID since our last update in May. HHS has been directed by the White House to play a leading role in coordinating the response to Long COVID and associated conditions. In the past two months we’ve taken steps to engage HHS by:  participating in multiple HHS community “listening sessions,”  introducing HHS to leading ME/CFS expert

Learn more about temperature dysregulation in this month's #FacetsofME feature.

After taking #MEAction's photography workshop with photographer Lucia Doynel for #MillionsMissing, Terra Dumont produced these stunning photos as a glimpse into her life as someone living with ME/CFS. Terra spread this experience over 7 days, focusing on a different theme each day. See her wonderful work and accompanying commentary below.

Welcome to April’s #FacetsOfME where we will focus on loneliness and how this illness affects our need for connection and relationships.

Learn more about cognitive dysfunction in this months #FacetsofME feature.

When discussing the facets of ME, it seems almost impossible to start with anything other than post-exertional malaise (PEM).

When discussing the facets of ME, it seems almost impossible to start with anything other than post-exertional malaise (PEM).

Experts at the #MEAction briefing linked long COVID to myalgic encephalomyelitis (ME) and urged NIH to research both conditions together.