NEWS

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

Long COVID Exercise study must address safety, efficacy concerns.

The Scottish Government published the updated Scottish Good Practice Statement (SGPS) on ME-CFS on 28th February 2023. The decision to update the Scottish Good Practice Statement, originally published in 2010, was a result of the Scottish stakeholder review of the 2021 NICE guideline on ME/CFS, and its recommendations for implementing the guideline in Scotland. The intention was to use this document as the vehicle to bring Scottish guidance in line with the NICE guideline for

Calls for immediate public release of RECOVER's clinical trial design

#MEAction Colorado’s first legislative effort in Colorado began with an ME/CFS day declaration in the Colorado Legislature on February 25, 2020. Representative Alex Valdez read into the legislative record a proclamation about the presence of and deleterious effects of ME in Colorado. This effort was relatively easy to accomplish and consisted of finding a representative willing to do it. One of our #MEAction CO members lived in his district and Valdez responded by gladly doin

Taking BOLD ACTION with our press outreach has led to national media writing about ME.

#MEAction and Mayo Clinic win SIDM for diagnostic and treatment improvement at Mayo Clinic Rochester for people with ME/CFS!

Protesters disabled by Long COVID and myalgic encephalomyelitis (ME/CFS) are protesting at the White House sidewalk TODAY at 12 p.m. ET to say that the “pandemic is not over,” and to call on President Biden to declare Long COVID and ME/CFS a national emergency.

The LONG COVID and ME/CFS community are planning a protest in front of the White House this Monday, Sept. 19th at 12 p.m. ET to demand that the Biden administration declare Long COVID and ME/CFS a national emergency.#MEAction is organizing a protest of people sick and disabled from Long COVID and myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) who are willing to put their bodies on the line, this Monday, Sept. 19th at 12pm ET on the White House sidewalk, 1600 Pe

Earlier this month #MEAction collaborated with Patient-Led Research Collaborative (PLRC) to suggest changes that the U.S. Department of Labor (DOL) should make in order to better track disability due to chronic illnesses such as ME/CFS and Long COVID in its regular surveys of disability employment issues. We provided feedback on ways to improve questions on topics related to work history, barriers to employment, job accommodations, commuting and work hours, financial assistan

#MEAction is excited to share a new and much-needed resource just in time for back to school! We are so thankful to have our allies at Long Covid Families join us in developing the Pacing and Management Guide for Pediatric ME/CFS and Long COVID. Our Pacing and Management Guide has been a critical and well-received part of our #StopRestPace campaign and we have been planning on adapting it specifically for children and teens. The Long Covid Families team brought in exactly wha

As we announced in February, the Scottish Government has committed to implementing the new NICE guideline for diagnosis and management of ME. The first step in the process was a Scottish stakeholder review, carried out externally by consultant Blake Stevenson. The report on the review was published in July and #MEAction Scotland supports its findings. We welcome the recommendations, which span healthcare education, service delivery and research. We’re extremely grateful to ev

#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

#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

#MEAction is once again excited to announce our Severe ME Artists Project 2022 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 their art work (whether it be writing, photography, drawing, or any other way that illustrates their talents. They can also submit past artwork created before they got sick.) with multiple ways to partici

Dear New York Community- We need urgent action now to persuade New York Governor Kathy Hochul to sign our ME/CFS bill into law! Take action now! Thanks to you and the #MEAction community, bill A7712B/S6928B, which provides for a myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) education and outreach program in New York, finally passed both the New York State Assembly and Senate. Last Wednesday, June 22nd, the bill was delivered to Governor Kathy Hochul, and she now

Since 2015, the 1-2.5 million Americans with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been effectively nonexistent, at least as far as US disease tracking systems are concerned. Americans don’t experience any morbidity (suffering, impairment) from ME/CFS. They can’t die with ME/CFS. Nobody develops ME/CFS following an acute COVID-19 infection - despite all the evidence that shows they can and do. And ME/CFS cases don’t show up in research using electro

We’ve got some very exciting news this week!Clinicians working at the Long COVID clinic at Mayo Clinic’s campus in Rochester, Minnesota met with #MEAction to discuss treatment, research and improved community engagement for people with ME! They reached out to us because they were interested in engaging with a national patient-led organization with strong community ties.Mayo Clinic is a leader in clinical care in the United States. Many healthcare providers in the US and beyon

We are thrilled to announce that Chimére Smith and Terri Wilder will be joining #MEAction as consultants to execute a new volunteer leadership training program funded by the Ford Foundation! We are so thrilled that we will be able to expand our volunteer programs to include robust training and provide fulfilling roles and opportunities for anyone who wants to work with us, become an activist with us, or provide support for a growing community. We are so privileged to have Chi

#MEAction has written to the NIH expressing our deep concern over the RECOVER Initiative.