NEWS

#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

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

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

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

May is nearly here and that means so is ME Awareness Week and #MillionsMissing! This year, #MEAction Scotland and #MEAction UK are returning to the central theme of #MillionsMissing - drawing attention to the people missing from their previous lives and wider society because of ME.Most people don’t understand how widespread ME is, or that so many in our community have been ill for decades. We want to flood social media with powerful images that show the reality of life with M

#MEAction, Long COVID Justice, Strategies for High Impact and Patient-Led Research Collaborative have submitted a joint public comment to the U.S. Drug Enforcement Administration (DEA) expressing our concerns with its proposed rule for telemedicine prescribing of controlled substances when the practitioners and the patient have not had a prior in-person medical evaluation.Data shows that the rollback of telemedicine prescribing will create further barriers to essential medica

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

Article summary: Sue Webber MSP’s Member’s Business debate took place in the Scottish Parliament on Thursday 2nd February, 2023. It was a successful debate with a good turnout of MSPs from across all parties, and it had to be extended due to the amount of MSPs who wanted to speak. There were calls on the government to pilot specialist services, fund research, and implement the NICE guideline. Many MSPs shared stories that people had sent them and talked about how many people

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

My name is Gabriel San Emeterio and I’m the cofounder of Strategies for High Impact and its Network for Long COVID Justice. I’m grateful to be here with the communities that I'm a part of and that I hold dearly which are: people living with HIV, and people living with illnesses that have a viral trigger such as Myalgic Encephalomyelitis or ME/CFS and Long COVID. Today, many decades after AIDS started killing us, we are in the crosshairs of colliding pandemics.Today is the 34t

Reflections from the World AIDS Day protest at the White House Protest

AIDS, ME/CFS & Long COVID activists demand Biden, Congress fund pandemic plans