NEWS

The #MillionsMissing Scotland demonstration, due to take place on Wednesday 14th, has had to be postponed.Following the death of Her Majesty the Queen, the Scottish Parliament is suspended, which means we won't be able to achieve the aims of the event. We appreciate that it’s disappointing and apologise for any inconvenience caused, particularly to those of you who have been planning your journeys and managing your energy to make it.We're looking at new dates in the last week

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

Whether or not you can join us in person at this year’s #MillionsMissing, you can help to make it a success by emailing your MSP and asking them to come out, say hello and sign a pledge to support people with ME.#MEAction Scotland will be outside the Scottish Parliament to engage with as many MSPs as possible and make them aware of the need for specialist services that are accessible to every person with ME in Scotland.  MSPs have a duty to support and represent their constit

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 

Earlier this month #MEAction collaborated with Patient-Led Research Collaborative (PLRC) to suggest changes that the U.S. Department of Labor (DOL) should make in order to better track disability due to chronic illnesses such as ME/CFS and Long COVID in its regular surveys of disability employment issues. We provided feedback on ways to improve questions on topics related to work history, barriers to employment, job accommodations, commuting and work hours, financial assistan

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

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 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 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

#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.

The U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) has updated the information on ME/CFS provided at its Job Accommodation Network website to align with the most current CDC guidance. This action will help workers and employers find accurate information on ME/CFS and combat stigma and improve workplace outcomes.At #MEAction’s recent meeting with ODEP we notified them that their informational resource on “Chronic Fatigue Syndrome” was out of date and

Since 2015, the 1-2.5 million Americans with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been effectively nonexistent, at least as far as US disease tracking systems are concerned. Americans don’t experience any morbidity (suffering, impairment) from ME/CFS. They can’t die with ME/CFS. Nobody develops ME/CFS following an acute COVID-19 infection - despite all the evidence that shows they can and do. And ME/CFS cases don’t show up in research using electro