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#MEAction’s Jaime Seltzer has been selected for TIME100 Health 2024, TIME’s new annual list of 100 individuals who most influenced global health this year!

#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

NIH’s recent paper on ME/CFS elicited strong reactions from the community.  While we recognize the incredible sacrifice of the patient community who gave their health and time to make this study possible, ultimately, we caution against drawing any sweeping conclusions from this study. The paper draws conclusions based on an atypical cohort that may not be representative of the ME/CFS community, and from a very small sample size, and there are also conclusions drawn in regards

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

We are excited to bring you a special Valentine’s Day promotion of Jamison Hill’s most recent book, Something’s Wrong with Micah. #MEAction had the pleasure of having a Twitter chat with Jamison when his memoir When Force Meets Fate came out. We now get to bring this Q&A about his newest book to you. Jamison has also generously decided to donate $1 for each book sold during the week of Valentine’s Day (Feb. 11- 18) to #MEAction! Thank you, Jamison! Where to find this book: It

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

In  Judith Woods' Comment piece on 2nd February 2024, ‘28-year-old Lauren Hoeve died by euthanasia - to a degree, I understand her pain’ she boldly asserts that a great deal of Lauren’s anguish was ‘psychological’.  The writer then belittles the immense pain suffered by people with severe ME, as Lauren did from 2019, as she does not believe that their suffering is ‘unbearable’.If Ms Woods had done even the most cursory research she would have found the updated NICE guideline

Both the UK and Scotland branches of #MEAction will start using updated figures for the prevalence of ME, based on a recent US survey.Unfortunately, all prevalence estimates for ME are of limited accuracy. This is due to a range of factors including, but not limited to, uncertainty around diagnosis, lack of confidence among healthcare professionals, and possible confusion with overlapping conditions. However, it is necessary for our campaigning work to decide on a figure, and

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

We are writing to express our deep concerns about a segment featured on an episode of Dragons' Den, which aired on BBC1 on Jan 18th 2024. The episode in question showcased a product “Acu Seeds” that had a back story where the entrepreneur said she “believed they had aided in her recovery of ME/CFS”. This is a complex condition with significant impact on those who suffer from it, and currently no treatment or cure is recognised by the NICE Guideline on ME/CFS (NG206) [1]. Whil

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

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.