NEWS

Post-viral conditions like ME/CFS provide guidance for estimating the economic impact of Long COVID.

On Wednesday 28th September, #MEAction Scotland led a successful #MillionsMissing demonstration outside the Scottish Parliament - the first time it’s been held in-person for three years. While it was in some ways a smaller event than #MillionsMissing Scotland was in 2018 and 2019, what it lacked in spectacle it made up for in engagement from politicians and the press.Approximately 120 people with ME, their friends and families joined #MEAction Scotland at the demonstration. A

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

People with ME, Long COVID and other complex, chronic diseases have experienced all kinds of healthcare discrimination. Now there is an opportunity for you to share your story and urge our government to move forward with improved protections to secure access to healthcare that is free from discrimination or prejudice.The deadline to submit a public comment is Monday, October 3rd at 11:59pm ET.Let’s share our stories and tell HHS that discrimination has no place in health care

The press hits are rolling in! The media showed up in a big way yesterday to cover our #MillionsMissing protest in front of the White House. One day after President Biden declared the “pandemic is over,” our community was at the gates of the White House to send Biden a message that a pandemic of chronic disease rages on. Protesters called on President Biden to declare Long COVID and ME a national emergency, and to provide all the urgent, full-scale resources for addressing t

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.

Protesters disabled by Long COVID and myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) lay down on the White House sidewalk today risking arrest to tell President Biden that the pandemic is not over, and that millions are being disabled from post-viral disease, including Long COVID and ME/CFS.

Following the postponement of #MillionsMissing Scotland, the demonstration has been rescheduled to Wednesday 28th September.#MillionsMissing Scotland will now take place on Wednesday 28th September, from 12.30-2.30pm. We appreciate this isn’t a lot of notice but we are keen to build on the momentum the event has already gained and to hold it while it will still be in the minds of the MSPs who have been invited. All previous plans remain the same. This event will be a smaller,

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

We are asking all our supporters, people with ME and people with other complex chronic conditions to lobby the Wellcome Trust, the biggest funder of medical research in the UK, to commit significant funding to ME. ME has been neglected, ignored and stigmatised for far too long and, as a result, hundreds of millions of pounds have been missing from ME biomedical research and this has to change.Virtual ActionsStep 1: Take a picture of yourself holding a red threadHere are the

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

The U.S. Department of Labor (DOL) has opened a national online dialogue on “Understanding and Addressing the Workplace Challenges Related to Long COVID.” The online dialogue is a text-based forum that will remain open for posting ideas and voting and commenting on those ideas until August 10th.In addition to people with Long COVID, #MEAction encourages workers and former workers with ME/CFS to participate in this dialogue and share their experiences, insights and possible so

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 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

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

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

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.

When discussing the facets of ME, it seems almost impossible to start with anything other than post-exertional malaise (PEM).

When discussing the facets of ME, it seems almost impossible to start with anything other than post-exertional malaise (PEM).