NEWS

#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

White House Must Confront Global Health Nightmare of Colliding Pandemics

BOLD ACTION to me, means mobilizing our community to publicly demonstrate our deep and intense—as opposed to shallow and passive—commitment to seeing healthcare justice for people with ME. It is about bringing our issues to the forefront of public consciousness and putting strong pressure on our leaders to act. Taking BOLD ACTION is both a pragmatic tactical tool for building the people-based power of our movement, and it is the vivid demonstration of the too-long hidden cris

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

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

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.

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

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.