NEWS

Caroline Kingdon's new paper on the NICE guideline for ME was co-written with #MEAction UK volunteer Adam Lowe, as well as Charles Shepherd of the ME Association and Luis Nacul of the London School of Tropical Medicine. As members of the NICE guideline development committee, the authors wrote this paper with GPs and primary care practitioners in mind. It explains the key messages of the guideline, including the need for better and earlier diagnosis, better treatment and the n

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

#MillionsMissing France has been busy.

At #MillionsMissing Scotland many MSPs pledged their support for people with ME, and now they have a chance to follow up on that commitment. And we need you to let them know about it! Sue Webber, MSP for Lothian, has put forward a motion that asks the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME commissioned earlier this year - ​​including education of healthcare professionals and development of specialist services.Motions

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

Code change will ensure US can track diagnosed cases of ME/CFS in newly created electronic health records

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

DHSC has released an update on the progress of the work underway to support the development of a Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue.

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

The National Institutes of Health (NIH) has taken steps to fix a “funding gap” in the timing of research awards for the ME/CFS Collaborative Research Centers (CRC) and the Data Management and Coordinating Center (DMCC). The currently-funded research centers which apply, and are approved, for another 5-year term will no longer face a 7-month funding gap between research awards.In February, #MEAction criticized NIH for issuing the latest ME/CFS CRC funding announcement for:1. n

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

On the 12 May, World ME Day, the former Secretary of State for Health and Social Care, Sajid Javid, announced the Government’s intention to develop a cross-Government Delivery Plan on ME/CFS for England. This intention was published in a Written Ministerial Statement laid in Parliament. Development of the plan will build on the recently published ‘Rethinking ME’ report by the All-Party Parliamentary Group on ME /CFS, the recently updated guidance from the National Institute

#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

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

#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