The MEAction Network

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#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[edit | edit source]

On July 24, 2016, #MEAction made a policy change where they would adopt ME for the name for future communications about the disease except where the name CFS needs to be mentioned.[1]

Notable projects[edit | edit source]

The Millions Missing protests were created by MEAction.

MEpedia was launched by MEAction.

CFSAC[edit | edit source]

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[edit | edit source]

MEAction UK has demanded "an immediate end to the use of GET and CBT."[2] 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.[2]

Actions[edit | edit source]

PACE trial[edit | edit source]

US Congressional Outreach[edit | edit source]

Centers for Disease Control and Prevention (CDC)[edit | edit source]

  • Jul 29, 2018, CDC Revises its Information on ME MEAction report on the CDC July 2017 and July 2018 website updates.[3][4] 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[edit | edit source]

Petitions[edit | edit source]

Medical & Scientific Fact Sheets[edit | edit source]

Organization[edit | edit source]

Learn more[edit | edit source]

See also[edit | edit source]

Online presence[edit | edit source]

References[edit | edit source]

Graded Exercise Therapy, a gradual increase in exercise or activity, according to a pre-defined plan.Cite error: Closing </ref> missing for <ref> tag

Systematic Exertion Intolerance Disease. A new term with new diagnostic criteria designed to replace chronic fatigue syndrome.<ref name="IOM2015">{{citation


The information provided at this site is not intended to diagnose or treat any illness.

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history