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

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

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 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 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.

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

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).

#MEAction has written to the NIH expressing our deep concern over the RECOVER Initiative.

Experts at the #MEAction briefing linked long COVID to myalgic encephalomyelitis (ME) and urged NIH to research both conditions together.

We're thrilled to welcome Jaime Seltzer as our Director of Scientific and Medical Outreach.