NEWS

#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

Welcome to the final #FacetsOfME for 2022, where we focus on centering ME during the holidays!

There has been so much happening since the #MillionsMissing protest on September 19th. We’ve shared some of our amazing press wins. You tuned into the live stream on Twitter. You saw the article that cover our government’s response. We are thrilled. And we want to take a moment to acknowledge all of the amazing activism from home that happened on or around September 19th. We saw #LongCOVID and #COVIDIsNotOver trending online. This is no small feat with all that was going on t

It has been over a year since the COVID-19 vaccine became available, and a subset of people with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) are reporting adverse effects from getting vaccines and boosters from all manufacturers. There are also rare reports of people without pre-existing conditions developing Long COVID and ME/CFS symptoms after getting a COVID vaccine, and we suspect the same underlying immunological response is at play.Vaccines save lives

Check out these tips on traveling with ME in this month's #FacetsofME feature.

#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

As part of #DisabilityPrideMonth, The Century Foundation’s podcast Off-Kilter has been hosting a series of conversations featuring Disability Economic Justice Collaborative* members and other leaders from the disability community. #MEAction board member Ryan Prior is a guest on the two-part Off-Kilter ADA 2022 Special that dives "into the picture for the millions of Americans now living with Long COVID, the incredible patient advocacy led by COVID long-haulers across the coun

#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 recognizes and celebrates Pride Month! As a community that welcomes and encompasses all, this Pride Month, we asked members of our LGBTQIA+ community to share what Pride means to them and what they have learned from this movement that they bring with them to the ME movement. Here are a few responses.

#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

Learn more about temperature dysregulation in this month's #FacetsofME feature.

After taking #MEAction's photography workshop with photographer Lucia Doynel for #MillionsMissing, Terra Dumont produced these stunning photos as a glimpse into her life as someone living with ME/CFS. Terra spread this experience over 7 days, focusing on a different theme each day. See her wonderful work and accompanying commentary below.

I am so thrilled to tell you that we have another $50,000 (£39,873.50) matching gift for #MEAction’s #MillionsMissing fundraiser. That means that everything you give will be matched dollar for dollar until we reach our goal of $200,000 (£159,490)!Here are three ways you can help us maximize this matching gift:1. Donate 2. Start a fundraiser on Facebook or through our website3. Share this email with friends and familyYour support of #MEAction will allow us to continue the vita

People with ME deserve accurate ME/CFS education from the Centers for Disease Control, not discredited recommendations for CBT and GET.

This year’s #MillionsMissing, our community created some amazing videos that we are privileged to highlight. This is just a small sampling of the amazing videos that were shared with us. It would be impossible to include them all, but we thank you all for sharing!

Thank you for illustrating our common thread so that our governments and institutions can respond to this health crisis.

Welcome to April’s #FacetsOfME where we will focus on loneliness and how this illness affects our need for connection and relationships.

Learn more about cognitive dysfunction in this months #FacetsofME feature.