#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

WHO: Dr. Benjamin Natelson at the Mount Sinai Hospital (New York)WHAT: The Pain and Fatigue Study Center at Mount Sinai is looking to examine why post activity fatigue (Post-exertional malaise) occurs in patients with ME/CFS and at what level. We are looking for patients that are between the ages of 25-60 and BMI of 30 and below.In order to confirm your eligibility, we will complete a brief phone intake.WHEN: The study will run for two years or until we reach our target numbe

My full reality: the interim delivery plan on ME/CFS is a great opportunity for the ME community to make our voices heard. Reading the interim plan and completing the survey is a big committment for #pwME so we have put together a document with advice on how to save your answers, a list of FAQs from the DHSC and a preview of the survey questions. • Easy Read version • Saving • Community call slides • Challenging the introduction • FAQs from DHSC • Question previewEasy read ve

MEAction UK has sent the following letter to the BMJ Editor in Chief, the JNNP Editor in Chief the and the JNNP Editorial Office Team to request more information following the removal of our rapid response to the paper published in the JNNP this month.We are disappointed that the JNNP decided to remove 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”.1  

#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

Below is the text of MEAction UK's rapid response submitted to the JNNP article that was published 10th July 2023.In the article ‘Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis’ published in the Journal of Neurology, Neurosurgery & Psychiatry on 10th July 2023, the authors claim NICE invented a new definition of ME. These claims are unfounded as NICE used the Institute of Medi

MEAction UK is preparing a detailed response to the latest published paper attacking the NICE Guideline on ME/CFS. In the meantime this is the response sent to The Guardian in reply to their article covering the publication.MEAction UK was shocked to read the article ‘ME/CFS guidance that discourages exercise is flawed, say researchers’ published on 11th July 2023.The article covers an attack on the 2021 NICE guideline for ME/CFS by a group of researchers who have focussed on

#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. 

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

Together, we built a new ME/CFS diagnostic & treatment algorithm for Mayo Clinic-- including info on severe ME.

This year, #MEAction Scotland will be doing smaller, more focused activities for #MillionsMissing than previous years, and we are asking the community to take part in the digital campaign, rather than joining us in person. We also need people to email their MSPs, which there is information about below.Volunteers are planning two main activities during ME Awareness Week in May.Parliamentary event for MSPs - 9th MayFollowing the successful debate in the Scottish Parliament in F