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#MEAction Testifies in Support of Maryland HB 27 to Advance Long COVID Research
#MEAction joined a Maryland bill hearing to support House Bill 27 (HB 27), a proposal that would create a Maryland Long COVID Research Fund and establish a Long COVID Innovation Grant and Loan Program through the Maryland Technology Development Corporation (TEDCO).
Feb 192 min read


Why We Launched an ICE campaign
Where we spend money reflects what we value. From ME research funding to Medicaid cuts, here’s why we’re speaking out, and how you can help.
Feb 93 min read


Guiding Minnesotans Living with Long COVID & ME/CFS to Secure In-Home Help
Pilot program offers free support for Minnesotans with energy-limiting illness
Sep 3, 20252 min read


CANARY CORPS – Alison's 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
Dec 4, 20234 min read


Check out the Updated, Expanded, Revamped MEpedia!
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
Nov 15, 20232 min read


CANARY CORPS – New Grassroots Program Coming Soon
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
Nov 6, 20232 min read


Join #MEAction Maryland's #HelpMESenator Campaign
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
Sep 28, 20232 min read


Severe ME Artists Project 2023
#MEAction is thrilled to announce our Severe ME Artists Project 2023 that will feature work from those within the severe ME community and will be in recognition of Severe ME Day on August 8th! This project will be an opportunity for those with severe ME to showcase your artwork, whether it be writing, photography, drawing, or any other way that illustrates their talents. You can also submit past artwork created before you got sick.The Severe ME Artists Project 2023 will featu
Jun 30, 20234 min read


#MEAction & Mayo ME/CFS Algorithm is Live!
Together, we built a new ME/CFS diagnostic & treatment algorithm for Mayo Clinic-- including info on severe ME.
Apr 26, 20232 min read


New #MEAction Volunteer Survey
#MEAction is excited to announce our new Volunteer Survey! We invite everyone to complete the survey. The survey link will be available on #MEAction’s website until Friday, July 29th. We encourage everyone to thoughtfully consider each question, fill out their responses, and submit the survey by the due date. The survey consists of 12 questions and is a combination of multiple choice and fill in the blank options. If you are not able to fill out the survey at one time, you ca
Jul 14, 20222 min read


Top 10 ME/CFS Recommendations for the Long COVID National Research Action Plan
#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
Jun 28, 20224 min read


#MillionsMissing: 7 Days in Self Portraits with ME/CFS
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.
Jun 20, 20227 min read


We can’t believe it! Another $50k matching gift!
I am so thrilled to tell you that we have another $50,000 (£39,873.50) matching gift for #MEAction’s #MillionsMissing fundraiser. That means that everything you give will be matched dollar for dollar until we reach our goal of $200,000 (£159,490)!Here are three ways you can help us maximize this matching gift:1. Donate 2. Start a fundraiser on Facebook or through our website3. Share this email with friends and familyYour support of #MEAction will allow us to continue the vita
Jun 6, 20223 min read


Celebrating Postcards to Doctors: Final Report
We’re incredibly pleased to announce that we not only met but exceeded our initial goal of sending 6,000 postcards out into the world!
Jan 28, 20204 min read
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