NEWS

#MEAction is excited to announce we are partnering with the Writers Guild Initiative (WGI) to offer creative writing workshops for people with ME and Long COVID**. WGI has graciously donated their time to offer these writer workshops through personal mentorship with the writers of the #MEAction community! The workshops consist of three sessions during the weekends in November. The WGI’s mission is to make the art of storytelling accessible to people of all ethnic, cultural, a

The National Institutes of Health (NIH) announced they will designate people with disabilities as a population with health disparities. This is a win that could have a large impact on people with ME and the millions of people with disabilities across the country. "This designation recognizes the importance and need for research advances to improve our understanding of the complexities leading to disparate health outcomes and multilevel interventions,” said Dr. Pérez-Stable. “

#MEAction is thrilled to share the incredible work our State Chapters have been up to over the past couple of months! They continue to amaze us daily with their dedication and hard work to bring awareness to the ME community. Read more about their success stories:California: • The University of California has added some disclaimers about the harm of exercise therapy in its Long COVID modules; however, further corrections are still in order. • We have continued successful mont

As a charity we were pleased to be able to submit a longer response than is possible using the online survey. Below is the text as submitted to the DHSC. (PDF version available here)This response is submitted by #MEAction Scotland, the Scottish arm of #MEAction UK, a not for profit organisation. Our response is based on the two areas identified in the Foreword of the Interim Delivery Plan (IDP) where it states that the “Scottish Government is keen to understand the views of s

As a charity we were pleased to be able to submit a longer response than is possible using the online survey. Below is the text as submitted to the DHSC. (PDF Version available here)IntroductionThis response is submitted on behalf of #MEAction UK, a not for profit organisation operating in all regions of the UK. We thank the DHSC staff past and present who supported the Delivery Plan and the volunteers on the working groups who put so much effort into this report. We give mor

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

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

MEAction UK have been in communication with the BMJ and are delighted to announce that the Journal of Neurology, Neurosurgery & Psychiatry (JNNP) are publishing an edited version of our rapid response to  ‘Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis’. We have taken out some of the more direct language but left the sense and the sentiment intact. We agreed to a few selected

#MEAction and Long COVID Justice issued a press statement yesterday about our communities’ deep concerns regarding the rollout of RECOVER’s clinical trials for Long COVID. As studies show half of the Long COVID community meets the diagnostic criteria for ME/CFS - and our core symptoms overlap - RECOVER’s research has major implications for our community. In the press release, we wrote about the great need to trial pharmacological drugs that have already shown promise in the M

#MEAction UK has now received a reply to our complaint about the removal of our rapid response from the Journal of Neurology, Neurosurgery & Psychiatry (JNNP). ‘Thank you for your email. I can confirm that your complaint has been received and is currently under review by the Content Integrity team at BMJ. We will endeavour to respond to you in full as soon as possible.’ In order to understand who/what might have been behind the re-evaluation and removal of our rapid response

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

#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

Announcing #MEAction and Body Politic’s new collaboration: we are excited to announce that #MEAction will now host Body Politic’s advocacy work as a project of #MEAction. Many of you know that Body Politic’s support group has officially closed. This was a devastating loss to the community – we know so much of the Long COVID and ME community have mourned the shutdown of their wonderful space and continue to grieve this loss. #MEAction knew we must keep the advocacy work alive

#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

I’ve been involved in planning many #MillionsMissing actions during my time with #MEAction, but for me, protesting at the Washington Monument this past May 12th was a different—even surreal—experience. The installation of cots was so large that I could see people coming across the mall to see what it was. I would tell them that the beds symbolized the millions missing due to ME and Long COVID, but my favorite part was explaining the personally decorated pillowcases with custo

On 16th May 2023, the Scottish Government published the findings from an analysis of surveys issued to NHS Health Boards to understand delivery of ME services and implementation of the updated NICE guideline. #MEAction Scotland welcomes the survey activity and report, as it provides useful evidence about the current issues people with ME are facing across Scotland. We appreciate the acknowledgement in the report that this survey was a direct result of our meeting with the the

While we are busy working to create a new online experience to highlight all the images and speeches from #MillionsMissing 2023 at the Washington Monument, we wanted to share with you some first-hand, touching experiences from the staff who were there. Each #MillionsMissing has had something special to offer and this year's surpassed expectations with a brand new art installation with powerful visuals to represent the millions missing.We hope you enjoy reading what our staff

Our press work continues to drum a strong beat as we tell the story of ME everyday to the media. We will continue to fight for our community’s decades of expertise living with, treating and researching ME to be heard, and integrated into our government’s Long COVID response. We refused to be erased from the story, or from the response to post-infectious disease. Over the past several months, we have been busy telling our story about the #MillionsMissing to the press. We’ve sp

This year, #MEAction Scotland’s #MillionsMissing campaign focussed on raising awareness of the reality of living with ME and called for education and training for healthcare professionals to improve support for people with ME across Scotland.Ahead of ME Awareness week, we put out a call, alongside #MEAction UK, to ask members of the ME community to join our digital campaign. The campaign asked people to share photos based on two ideas – their view of living with ME or the spa

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.