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

The NIH ME/CFS Research Roadmap public comment period is open now with a deadline of March 8th. #MEAction is a member of the ME/CFS Research Roadmap Working Group and for the past several months we have been advocating on behalf of this community within this group. Our Executive Director, Laurie Jones, served on the nervous system committee group prior to going out on maternity leave. She helped plan the first webinar and wrote drafts of research objectives with other committ

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

The U.S. Senate HELP Committee held a historic hearing about Long COVID last Thursday to discuss advancing research and improving patient care. #MEAction contacted the press to alert them to the hearing, and issued a follow-up press release sharing highlights from the hearing, and explaining the connection with ME/CFS. Our Scientific Director worked behind the scenes to advise a number of committee members on their testimonies.  There was a large show of support from Senators

The U.S. Senate HELP Committee held a hearing on Long COVID yesterday to discuss advancing research and improving patient care.

The U.S. Senate Committee on Health, Education, Labor & Pensions will host a hearing on addressing Long COVID, advancing research and improving patient care TOMORROW, Thurs. 18 at 10 a.m. ET. Watch the hearing and find more details HERE.  Angela Meriquez Vázquez, M.S.W. will be one of three stellar advocates testifying about her personal experience with Long COVID. Vázquez is the former President of Body Politic, a grassroots health justice organization at the forefront of Lo

Alison Sbrana will be co-presenting our introduction to Canary Corps. on Wednesday. This is her story.

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

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

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

#MEAction is thrilled to announce a new travel scholarship for providers and medical students to the National Institutes of Health’s (NIH) Conference, Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID, this coming December 12- 13, 2023 in Bethesda, MD.  #MEAction is providing this opportunity for one to two promising medical students (MD, DO, NP,  or PA)  and one to two practicing medical providers (MD, DO, NP, or PA). All scholarshi

#MEAction is excited to announce we are partnering with the Writers Guild Initiative (WGI) to offer creative writing workshops for people with ME and Long COVID**. WGI has graciously donated their time to offer these writer workshops through personal mentorship with the writers of the #MEAction community! The workshops consist of three sessions during the weekends in November. The WGI’s mission is to make the art of storytelling accessible to people of all ethnic, cultural, a

The National Institutes of Health (NIH) announced they will designate people with disabilities as a population with health disparities. This is a win that could have a large impact on people with ME and the millions of people with disabilities across the country. "This designation recognizes the importance and need for research advances to improve our understanding of the complexities leading to disparate health outcomes and multilevel interventions,” said Dr. Pérez-Stable. “

#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

We are writing this article to share some exciting news!On Tuesday, September 26, ME advocates delivered copies of the book, The Puzzle Solver, by Tracie White with Ronald W. Davis, PhD, along with information about ME and Long Covid to Senators on the Hill. The books were donated by an individual living with severe ME/CFS in an effort to raise awareness and delivered by health allies. Advocates will return next session to deliver books to the remaining Senate offices.Myalgic

#MEAction and Long COVID Justice issued a press statement yesterday about our communities’ deep concerns regarding the rollout of RECOVER’s clinical trials for Long COVID. As studies show half of the Long COVID community meets the diagnostic criteria for ME/CFS - and our core symptoms overlap - RECOVER’s research has major implications for our community. In the press release, we wrote about the great need to trial pharmacological drugs that have already shown promise in the M

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

WHO: Dr. Benjamin Natelson at the Mount Sinai Hospital (New York)WHAT: The Pain and Fatigue Study Center at Mount Sinai is looking to examine why post activity fatigue (Post-exertional malaise) occurs in patients with ME/CFS and at what level. We are looking for patients that are between the ages of 25-60 and BMI of 30 and below.In order to confirm your eligibility, we will complete a brief phone intake.WHEN: The study will run for two years or until we reach our target numbe

Announcing #MEAction and Body Politic’s new collaboration: we are excited to announce that #MEAction will now host Body Politic’s advocacy work as a project of #MEAction. Many of you know that Body Politic’s support group has officially closed. This was a devastating loss to the community – we know so much of the Long COVID and ME community have mourned the shutdown of their wonderful space and continue to grieve this loss. #MEAction knew we must keep the advocacy work alive