Category: Advocacy

Red Rectangle: #MEAction logo on the top, with the words Advocacy Win! NIH announces they will designate people with disabilities as a population with health disparities! in white font.

Advocacy Win! Disability Partnerships Make a Difference for People with ME

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

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red rectangle image with gold fireworks in each corner. #MEAction logo and the words, "State Chapter Success Stories" in white font in the center.

#MEAction State Chapters Are Making Advocacy Moves

#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

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Image is a sky blue rectangle, with an image of the #MEAction Maryland's logo that has the words Maryland State Chapter over an image of a lighthouse. On the righthand side if the image are the words, Join #MEAction's Marylans's #HelpMESenator Campaign in black font.

Join #MEAction Maryland’s #HelpMESenator Campaign

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

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Photo of staff members smiling at camera on a zoom call.

#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

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A red background with slight paper texture to it is displayed with Body Politic mustard yellow in a wave shape at the bottom. Above the background there are three white illustrations of forearms with hands in a fist rising from the bottom of the image. At the top, center is the text: We are stronger together. It is flanked on both sides by the Body Politic and #MEAction logo.

 #MEAction & Body Politic: We Are Stronger Together

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

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On a red background the words, ​​"Bed activism" at the Washington Monument & A Politics of Care by Ben HsuBorger in white. The #MEAction logo in the bottom righthand corner.

​​”Bed activism” at the Washington Monument & A Politics of Care

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

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A laptop sitting on a desk. In the background, you can see a cup and saucer, some post-it notes and a folder. On the screen is the Scottish Government's website, with a large title that says 'Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Services in Scotland: Findings from an analysis of surveys issued to NHS Boards in Autumn 2022.' A red banner is at the bottom of the photo with the ME Action Scotland logo and text which says, 'ME Action Scotland response to the Health Board survey about ME.’

#MEAction Scotland response to the survey of Health Boards

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

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A red box on the left hand side features the #MEAction logo and the words Staff Share their #MillionsMissing Experience. On the right hand side is a photo of staff at the Washington Monument with red cots and chairs in the background.

Staff Share Their First-Hand Experiences from #MillionsMissing 2023

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

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Image features newspappers folder up and stacked together vertically. There is a red box in the center that has the words, Why We Keep Telling the Story of ME to the Press in white and the #MEAction logo in the righhand corner of the box.

Why We Keep Telling the Story of ME to the Press

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

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