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#MEAction & Mayo Clinic Projects Continue – New Grant Awarded
Given the rapidly changing landscape at the federal level, we recognize that the road ahead may bring some changes
You’re Invited: The Beth Mazur Innovation Prize Fundraiser
You are cordially invited to The Beth Mazur Innovation Prize Fundraiser on Wednesday, November 13th at 2pm PST/5pm EST.
A Very Modified Movement Class on 11/15
Join #MEAction for our final very modified movement class of the year on Friday, November 15th at 11am PST/2pm
#MEAction Scotland publishes refreshed strategic priorities
#MEAction Scotland has refreshed and updated its strategic priorities for the period 2024-2026, in anticipation of the expected Scottish
Submit Long COVID Drug Recommendations to RECOVER-TLC!
Last month, RECOVER TLC met at NIH headquarters in Bethesda. The goal was to initiate a drug development strategy
The RECOVER-Treating Long COVID (RECOVER TLC) The Path Forward
The RECOVER-Treating Long COVID (RECOVER TLC) Kick-off Meeting was Sept 23-25 in person and over Zoom. I had the
Pillow Writers Anthology, Issue 1: Near-Life Experiences Available Now!
The Pillow Writers Anthology, Issue 1: Near- Life Experiences is a new literary magazine in the disability community. This
#MEAction UK’s annual report Oct 2022 – Oct 2023
Download #MEAction UK’s annual report covering what we’ve done in the year Oct 2022 to Oct 2023.Download now (PDF
#MEAction UK’s email/letter to Andrew Gwynne MP
To: Andrew Gwynne, Under Secretary of State for Public Health and Prevention Subject: Treatment of Very Severe ME email
#TeachMETreatME: We Can’t Believe These Numbers
We tallied up some numbers from our #TeachME, TreatME campaign to educate clinicians and medical students about ME, and
#TeachMETreatME: Share the Mayo Clinic CME With Your Doctor
We encourage you to share the Mayo Clinic Proceedings Continuing Medical Education (CME) course on ME/CFS with your doctor! It is
#MEAction Awarded 3-Year Grant by Minnesota Department of Health Long COVID Program
Breaking news! #MEAction has just been awarded a 3-year grant by the Long COVID Program of the Minnesota Department
Severe ME Artists Project 2024
Quick Overview: Submit one piece of artwork – image, writing, or video Label your artwork with your name as
Pride Is Valid No Matter How One Celebrates or Experiences It
In honor of Pride Month, #MEAction is sharing a heartfelt message from our board member, Jennifer England, about what
Questions to Ask Prospective MPs About ME/CFS
In the next few weeks, candidates will be knocking on doors seeking votes for the upcoming UK Election. It’s
#MEAction Scotland publishes impact statement
#MEAction Scotland is pleased to publish our impact statement, which covers March 2022 to May 23. It reports on
#TeachMETreatME: Celebrating An Impactful Campaign
We are THRILLED to share the rolling successes of our #TeachMETreatME campaign with you, as we report back on
#MillionsMissing Week is Here: #TeachMETreatME in Action!
We are excited to announce the kick-off of #MillionsMissing 2024 – our ongoing campaign to Teach ME and Treat
#MEAction’s Jaime Seltzer Selected for TIME100 Health 2024
We are thrilled to share with you that Jaime Seltzer, #MEAction’s Scientific Director, has been selected for TIME100 Health
Interview With Lauren Saikkonen – Author of Invisible Illness: Coming of Age, Chronic Illness, and a Mother’s Will to Survive
#MEAction is once again thrilled to share a new book, Invisible Illness: Coming of Age, Chronic Illness, and a
Home Test To Treat: Access Free Home Telehealth for Flu & COVID-19 Infections
#MEAction and Body Politic* are excited to collaborate with Home Test To Treat to share their critically important resource!
#NotJustFatigue – Community Member Launching A New Website Today!
#MEAction is excited to announce community member, Elizabeth Ansell, created a new website, #NotJustFatigue, launching today, March 1, 2024!
#MEAction’s NIH Study Response
NIH’s recent paper on ME/CFS elicited strong reactions from the community.
Black ME Voices: Q&A with Teona Studemire
With it being Black History Month, it was crucial to me to make sure we spotlighted someone from the
NIH ME/CFS Research Roadmap Update–Public Comment Period Now Open
The NIH ME/CFS Research Roadmap public comment period is open now with a deadline of March 8th. #MEAction is
Valentine’s Day Interview with Jamison Hill & Book Promotion
We are excited to bring you a special Valentine’s Day promotion of Jamison Hill’s most recent book, Something’s Wrong
#MEAction’s Volunteer Program Revamped
Exciting news: #MEAction revamped our volunteer program for the new year! We are honored to have wonderful volunteers including
#MEAction UK’s letter to The Telegraph, Feb 2024
In Judith Woods’ Comment piece on 2nd February 2024, ‘28-year-old Lauren Hoeve died by euthanasia – to a degree,
#MEAction UK and Scotland update prevalence figures based on new data
Both the UK and Scotland branches of #MEAction will start using updated figures for the prevalence of ME, based
#MEAction Writers Inspired by WGI Workshops
Last fall, #MEAction partnered with the Writers Guild Initiative (WGI) to offer writing workshops to twenty-five community members. #MEAction
#MEAction Meets with the Office of Long COVID Research and Practice
On January 17th, 2024, #MEAction convened a constructive meeting with Dr. Ian Simon, the newly appointed director of the
Historic Hearing on Long COVID in the Senate HELP Committee
The U.S. Senate HELP Committee held a historic hearing about Long COVID last Thursday to discuss advancing research and
#MEAction UK’s letter to the BBC over the show Dragons’ Den
We are writing to express our deep concerns about a segment featured on an episode of Dragons’ Den, which
Senate HELP Committee Shows Strong Support for Long COVID
The U.S. Senate HELP Committee held a hearing on Long COVID yesterday to discuss advancing research and improving patient care.
Senate HELP Committee to Hold Hearing on Long COVID
U.S. Senate HELP Committee to Hold Hearing on Long COVID The U.S. Senate Committee on Health, Education, Labor &
Beth Mazur — Memorial Service and Obituary
As many of you know, we lost a wonderful person recently. Beth Mazur passed away after battling ME for
Sad News From Our Community — Content Warning
We are sharing some sad news. Please put your health first. Content warning for sharing the loss of a community member.
Chronic Illness Survey Adventure Finishing this Month!
Two years ago, #MEAction embarked on an ambitious project, the Chronic Illness Survey Adventure! The Adventure is a survey
CANARY CORPS – Alison’s Story
Have you registered yet to join us this Wednesday, December 6th at 4pm ET / 1pm PT for a
A Year of Exciting Medical Education Achievements
A year ago, we were proud to announce that #MEAction and Mayo Clinic Rochester had won a grant for
#MEAction Shares Our Thanks for Your BOLD ACTIONS
During this time of thankfulness and gratitude, #MEAction staff wants to share what BOLD ACTIONS we are thankful our
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,
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
Announcing: New NIH Conference Travel Scholarship for Providers and Medical Students!
#MEAction is thrilled to announce a new travel scholarship for providers and medical students to the National Institutes of
#MEAction Partners with Writers Guild Initiative to Offer Writers Workshops
#MEAction is excited to announce we are partnering with the Writers Guild Initiative (WGI) to offer creative writing workshops
Advocacy Win! Disability Partnerships Make a Difference for People with ME
The National Institutes of Health (NIH) announced they will designate people with disabilities as a population with health disparities.
MEAction Scotland’s Response to: My full reality: the interim delivery plan on ME/CFS
As a charity we were pleased to be able to submit a longer response than is possible using the
#MEAction State Chapters Are Making Advocacy Moves
#MEAction is thrilled to share the incredible work our State Chapters have been up to over the past couple
#MEAction UK’s Response to DHSC (My full reality: the interim delivery plan on ME/CFS)
As a charity we were pleased to be able to submit a longer response than is possible using the
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
“#MillionsMissing is our drumbeat”
RSVP TODAY: We are hosting a preview party for the new, virtual Home of the #MillionsMissing this Sunday, September 24th,
JNNP to publish edited rapid response by MEAction UK.
MEAction UK have been in communication with the BMJ and are delighted to announce that the Journal of Neurology,
#MEAction and Long COVID Justice Issue Press Statement about NIH Failure of Long COVID
#MEAction and Long COVID Justice issued a press statement yesterday about our communities’ deep concerns regarding the rollout of