The MEAction Network
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]
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." 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[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. 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]
- #MEAction handout on the Diagnosis & Management of ME Attention: MEAction uses SEID criteria in this handout, that means that also people with psychatric disorders can fit them! This are not the International Consensus Criteria which exclude psychiatric disorders!
Organization[edit | edit source]
Learn more[edit | edit source]
See also[edit | edit source]
Online presence[edit | edit source]
References[edit | edit source]
- #MEAction Policy Change: ME, not ME/CFS
- #MEAction (Jul 1, 2018). "Parliament Plays NICE - #MEAction". Retrieved Nov 14, 2018.
- Trial By Error: The CDC Drops CBT/GET - Virology Blog
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov