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 research and treatment situation, through local affiliate groups in countries around the world. #MEAction runs special interest groups focused on science & 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 as . 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.

Notable projects

The Millions Missing protests were created by MEAction.

MEpedia was launched by MEAction.

A number of pandemic-related projects and materials were created by #MEAction, including:

• The Disinformation Guide - #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 Guide - 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 - #MEAction created two handouts for people with ME who face hospitalization due to COVID infection, including the Hospitalization Checklist and the Hospital Form.

In 2023, #MEAction produced a Concise Clinical Review in Mayo Clinic Proceedings as part of an 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.

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.

Opposition to GET and CBT

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.

Actions

Centers for Disease Control and Prevention (CDC)

• Jul 29, 2018, CDC Revises its Information on ME MEAction report on the CDC July 2017 and July 2018 website updates. Recommendations for the CDC's ME/CFS page have been created from patient feedback on the updates as well as asking for further patient input.

Tools

Medical & Scientific Fact Sheets

• #MEAction handout on the Diagnosis & Management of ME
• #MEAction Research Summary (2019)

See also

• MEAction Reddit

Online presence

• Website
• Twitter
• 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

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.

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.

NICE guidelines Clinical guidelines used in the UK.

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.

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.

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.

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.