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]

Myalgic encephalomyelitis (ME) - 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.

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.

ME/CFS - An acronym that combines myalgic encephalomyelitis with chronic fatigue syndrome. Sometimes they are combined because people have trouble distinguishing one from the other. Sometimes they are combined because people see them as synonyms of each other.

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.

Systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

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.