top of page
NEWS
Read the latest in ME news and campaigns—never miss a beat!
Search


Severe ME Artists Project 2024
The Severe ME Artists Project is back for 2024! Submissions are now open until July 25th.
Jun 26, 20244 min read


Questions to Ask Prospective MPs About ME/CFS
With the upcoming UK election, It’s important that candidates are made aware of the challenges facing people with ME and Long COVID.
Jun 4, 20242 min read


#MEAction Scotland publishes impact statement
See #MEAction Scotland's impact statement for the period between 3/2022 and 5/2023.
May 23, 20241 min read


#TeachMETreatME: Celebrating An Impactful Campaign
We are THRILLED to share the successes of our #TeachMETreatME campaign as we report back on the medical education events that have taken place so far.
May 17, 20244 min read


#MillionsMissing Week is Here: #TeachMETreatME in Action!
Learn more about our campaign, the events, & how to get involved
May 7, 20243 min read


#MEAction's Jaime Seltzer Selected for TIME100 Health 2024
#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!
May 2, 20243 min read


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 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
Apr 29, 20243 min read


CANARY CORPS – Alison’s Story
Alison Sbrana will be co-presenting our introduction to Canary Corps. on Wednesday. This is her story.
Dec 4, 20235 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


“#MillionsMissing is our drumbeat”
RSVP TODAY: We are hosting a preview party for the new, virtual Home of the #MillionsMissing this Sunday, September 24th, at 12 pm PT/ 3 pm ET/ 8 pm BST!We have always had to be creative in telling Our Story - the story of M.E. - to the world since so many of us cannot protest in the streets. How do we shine a light into our darkened rooms and demand the world’s attention? We started with shoes. Send in your shoes with a tag to tell your story. We will show the world that you
Sep 20, 20233 min read


#MEAction’s Summer Work Heats Up
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
Aug 16, 20233 min read


#MEAction Calls for ME & Long COVID to be Part of COVID-19 Task Force
#MEAction and three Long COVID organizations published a statement today urging Congress to support bipartisan legislation to establish a national task force to investigate the COVID-19 outbreak. Our organizations have also signed onto Marked By Covid’s open letter to Congress calling for the bill’s passage. Together, we are urging Congress to hold our federal health and research agencies accountable for their abject failure to be prepared for the Long COVID and ME/CFS crisis
Jul 25, 20232 min read


Long COVID & ME/CFS Communities to Demonstrate TODAY on National Mall
Washington, DC – The ME/CFS and Long COVID communities will demonstrate today with the installation of 300 cots on the National Mall to represent the millions of people missing from their lives due to post-infectious disease. We are the #MillionsMissing.
May 12, 20236 min read


Creative Fundraising Initiatives for #MEAction
At #MEAction, we work to advocate for and with people with ME. As a small and growing non-profit, individuals who create and develop fundraisers for #MEAction makes a HUGE difference for the organization. Here are some examples of individuals and groups who are creating their own fundraising initiatives in support of #MEAction. 1. Starting Your Own Fundraiser Through #MEAction’s Website! People with ME, as well as caregivers have started their own fundraisers through #MEActi
May 1, 20233 min read


ME & Long COVID patients need telemedicine prescribing flexibility
#MEAction, Long COVID Justice, Strategies for High Impact and Patient-Led Research Collaborative have submitted a joint public comment to the U.S. Drug Enforcement Administration (DEA) expressing our concerns with its proposed rule for telemedicine prescribing of controlled substances when the practitioners and the patient have not had a prior in-person medical evaluation.Data shows that the rollback of telemedicine prescribing will create further barriers to essential medica
Mar 31, 20233 min read


NIH Must Not Overlook Evidence of Exercise Harm
Long COVID Exercise study must address safety, efficacy concerns.
Mar 22, 20232 min read


DHSC Released A New Progress Report
DHSC has released an update on the progress of the work underway to support the development of a Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue. This is dated from December 2022.You can read the full report using the link below:DHSC Information Bulletin Dec 22 FINAL MECFS updated
Jan 19, 20231 min read


Let’s Look at #MEAction’s Top Hits from 2022
As we ring in the new year, it is a wonderful time to reflect on how much #MEAction accomplished in a very busy and exciting 2022! There are so many wins to share, so we decided to narrow down the list to our TOP HITS!#MILLIONSMISSING 2022:• Bringing together the powerful Virtual #MillionsMissing Event in May that featured a wide range of diverse speakers and drew in a large audience.• LEVELING UP OUR ADVOCACY with an in-person protest for #MIllionMissing September outside th
Jan 9, 20233 min read


Ask your MSPs to stand up for people with ME
Sue Webber MSP’s motion about ME will be debated in the Scottish Parliament on Thursday 2nd February - and your MSPs should be there! The motion calls on the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME, including education of healthcare professionals and development of specialist services. We’re pleased that 59 MSPs have given their support to the motion, and you can see if your MSP supported it on the Scottish Parliament
Jan 5, 20234 min read


#MEAction Scotland’s November Community Call
#MEAction Scotland’s latest community call took place on Wednesday, 23rd November.People with ME from across Scotland joined four volunteers to catch up on what #MEAction Scotland has been doing since the summer.First up was feedback on a very successful #MillionsMissing event at the end of September. The main focus of that event was to engage with MSPs, asking them to attend to meet with and show their support for people with ME. As a result of a widespread and powerful emai
Dec 12, 20223 min read
bottom of page
