The MEAction Network

#MEAction (The Myalgic Encephalomyelitis Action Network) is a worldwide ME/CFS patient advocacy group co-founded May 12, 2015 by Jennifer Brea and Beth Mazur.

Its focus is on empowering patients to take action to improve the status of research and clinical care through nationally organized efforts with the support of local affiliate groups in countries around the world. #MEAction also runs special interest groups focused on science and research, public education and press relations.

History

#MEAction began in 2015 with co-founders Beth Mazur and Jen Brea. In 2016, Ben Hsuborger was hired as Advocacy Director, Jaime Seltzer was hired as Managing Editor, and Adriane Tillman. Seltzer worked at the Stanford Genome Technology Center under Dr. Ron Davis before returning in 2018 in the role of Director of Scientific and Medical Outreach, later Scientific Director. Laurie Jones was brought on as Executive Director, Holly Lanham as Social Media Coordinator, Erin Roediger as Programs and Campaigns Director, Steven Moloney as Video and Communications Manager, and Marynka Marquez as Development Coordinator.

#MEAction began as a grassroots movement with the goal of making advocacy more accessible by leveraging technology that was not yet standard at the time, like videoconferencing software and Slack. In 2016, #MEAction formed the first #MillionsMissing protests. A 'test run' of #MillionsMissing ran in twelve cities worldwide in 2016; later in the same year, the protests expanded to include over a hundred events, local and virtual, to fight for better government research funding, accessible clinical care, and broader recognition of ME. MillionsMissing events continue today, with the 2024 efforts focused around medical education: the Teach ME, Treat ME initiative.

Notable projects

PACE Trial Petition

MEAction's first major action as an organization was the PACE petition signed by 12,000 individuals, protesting the PACE trial and requesting retraction of the paper on grounds of unethical conduct. MEAction worked with David Tuller to obtain three dozen signatures from clinicians and researchers for an open letter asking the Lancet for an independent review of the PACE trial.

MEAction UK has demanded "an immediate end to the use of GET and CBT." While the ME treatment guidelines were under review by NICE, MEAction demanded an interim change to the existing guidelines to stop the use of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) before the new guidelines were published.

MillionsMissing

The Millions Missing protests were created by MEAction. Millions Missing (or #MillionsMissing) is an annual event or series of events that began at #MEAction as the idea of one advocate that grew into a concept adopted by ME organizations worldwide.

In discussions, ME advocates kept returning to the idea that post-exertional malaise (PEM) made it challenging if not impossible to protest in person. "Millions Missing" was a way to represent those who were too ill to protest, and those who had died due to complications of the disease.

MEpedia

MEpedia is a project founded by The MEAction Network, powered by the patient community, and built by volunteers including patients, students, and researchers. It is a crowd-sourced knowledge base on the history, science and medicine of ME, CFS, and related diseases.

Currently, MEpedia has over 3,000 articles which have been viewed over 40 million times.

Medical Education

Unrest CME and Postcards to Doctors Initiative

In 2018, Jen Brea's documentary about ME from Shella Films, Unrest, debuted. MEAction then worked with Dr. Lucinda Bateman and Dr. David Kaufman to produce a short accompanying film about diagnosis and treatment for continuing education (CE, or CME) credits. These are credits required for medical providers to maintain their licenses in the United States. Then, MEAction launched the Postcards to Doctors campaign, in which members of the community sent hand-written postcards urging clinicians to take the CME and share it with others. The initiative ran in 2019 and 2020 and, as a result, over 700 medical providers took the Unrest CME. The rate of uptake for the Postcards initiative alone rivaled that of in-person offerings at conferences on ME/CFS, and the total number of providers who took the Unrest CME over its two-year run is many times the uptake for the average CME.

Long COVID CME

In 2020, #MEAction held two seminars at the start of the pandemic, one for medical providers and one for laypersons. The former was adapted to a presentation at the Rochester School of Medicine and Dentistry and offered for credit as part of Grand Rounds.

Mayo Clinic Proceedings CME

In 2023, #MEAction produced a Concise Clinical Review in Mayo Clinic Proceedings as part of a grant from the Society to Improve Diagnosis in Medicine. This project also funded the co-creation of a diagnostic and treatment algorithm and edits to Mayo's public-facing page on ME/CFS.

Teach ME, Treat ME Initiative

MEAction's #TeachMETreatME (Teach ME, Treat ME) campaign in 2024 was built around in-person and virtual medical education events at university hospitals, medical systems, and other healthcare institutions. In addition, MEAction sought longer-term partnerships to transform medical education and clinical care at institutions across the US.

Long COVID and the SARS-CoV-2 Pandemic

Community Outreach and Materials

• The Disinformation Guide (April 2020) #MEAction knew a wave of disinformation was about to hit during the pandemic. In April 2020, #MEAction created a guide to spotting and responding to healthcare-related disinformation.
• The Pacing Guides (May 2020, 2021, 2022) In response to the likely surge of infection-associated chronic illness, #MEAction created a guide to pacing for the newly-diagnosed in early 2020. Subsequently, #MEAction partnered with Long COVID Families to create the Pediatric Pacing Guide, and with the Patient-Led Research Collaborative (PLRC) to create the Clinician's Pacing Guide
• The Hospitalization Kit (May 2020) #MEAction created two handouts for people with ME who face hospitalization due to COVID infection, including the Hospitalization Checklist and the Hospital Form.

Pandemic Press Outreach

In addition, MEAction staff, including Scientific Director Jaime Seltzer, Advocacy Director Ben Hsuborger, and Public Relations Manager Adriane Tillman communicated with multiple news outlets regarding ME/CFS and Long COVID, including TIME, Rolling Stone, Infection Control Today, The Washington Post, The Atlantic, NPR, the LA Times, Medscape, Stat News, Muck Rock, National Geographic, and many other publications. Advocates at #MEAction UK and state and local groups at #MEAction gained many press hits as well.

Work on National and International Committees

CDC

• MEAction representatives worked on a CDC committee to revamp their public-facing pages on ME/CFS in 2016; these changes were completed July 2018. #MEAction also surveyed the community for additional feedback on the site.

CFSAC

• MEAction became a non-voting liaison representative to the Chronic Fatigue Syndrome Advisory Committee (CFSAC) for the term June 2017 to June 2019. CFSAC, an advisory committee to the US Office of the Assistant Secretary for Health, allots three seats to patient advocacy groups.

Medical & Scientific Fact Sheets

• Diagnosis & Management of ME (2018)
• #MEAction Research Summary (2019)
• The Disinformation Guide (April 2020)
• Hospitalization Checklist (May 2020)
• Hospital Form (May 2020)
• The Pacing Guides (May 2020, 2021, 2022)

Online presence

• Website
• Twitter /X
• Instagram
• Facebook