NEWS

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.

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

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

During this time of thankfulness and gratitude, #MEAction staff wants to share what BOLD ACTIONS we are thankful our volunteers and community have taken throughout the year. We thought we could reflect together on all that we have accomplished this year and how every single one of us is important in this powerful community. A community who never ceases to amaze us with BOLDNESS, STRENGTH, COMPASSION, and VULNERABILITY!#MEAction is able to do what we do, because of you! You ar

Great news! About six months ago, we began a project to update, expand, and revamp MEpedia. Due to a generous grant, we were able to create a project scope, hire respected experts in accessibility and MediaWiki development, and make several important changes to MEpedia!MEpedia is a Vital ResourceMEpedia is one of the most utilized resources for researchers, clinicians, and people living with ME/CFS, with over 36 million page views.  However, the software running MEpedia, Medi

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