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." The UK treatment guidelines for ME/CFS, known as the NICE guidelines are currently under review, but MEAction has 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 are 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.

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. Advocated 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

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

genome an organism's complete set of DNA, including all of its genes

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

NICE guidelines Clinical guidelines used in the UK.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

Chronic Fatigue Syndrome Advisory Committee (CFSAC) - (sometimes pronounced SIF-SACK) A US government advisory council that met twice per year, covering current topics related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Meetings usually lasted for two days and the results were presented to the Secretary of Health and Human Services (HHS). After 15 years, on September 5, 2018, CFSAC's charter was not renewed by the Department of HHS, effectively dissolving the committee without notice or warning.

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.

Agency for Healthcare Research and Quality (AHRQ) - Agency for Healthcare Research and Quality is a United States government agency under the U.S. Department of Health and Human Services. Their mission is "to produce evidence to make health care safer, higher quality, more accessible, equitable, and affordable. A representative of the Agency for Healthcare Research and Quality sat on the (now disbanded) CFSAC committee as an Ex Officio Member.

World Health Organization (WHO) - "A specialized agency of the United Nations that is concerned with public health. It was established on 7 April 1948, and is headquartered in Geneva, Switzerland. The WHO is a member of the United Nations Development Group. Its predecessor, the Health Organization, was an agency of the League of Nations." The International Statistical Classification of Diseases and Related Health Problems (ICD) is maintained by WHO.