MEadvocacy
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
MEadvocacy is a project of May12.org, a 501(c)(3) not-for-profit corporation whose mission is to raise global awareness and education for complex immunological and neurological diseases, including Myalgic Encephalomyelitis (ME).[1] Mary Ann Kindel and Joni Comstock, both American patient advocates, launched the project in 2014.[2]
Their mission as an all volunteer organization is to advocate for Recognition, Definition and Research for Myalgic Encephalomyelitis.
MEadvocacy's current goals are to promote and support activities such as:
- Getting Myalgic Encephalomyelitis officially recognized as its own distinct disease in the US. ME has a 60 year history and has been classified as a neurological disease in the World Health Organization's International Classification of Diseases since 1969.[3]
- Getting a single clear ME expert definition for diagnosis and research, adopted as the official definition for ME. Examples are the Canadian Consensus Criteria (CCC), the International Consensus Criteria (ICC)[4] or an even better definition with the CCC and/or ICC as starting points. ME experts must be used in decision-making as the current “CFS” literature provides a misleading picture of the disease.
- Getting government funding to study this devastating disease, in the amount of $250 million annually – an amount on par with similar diseases such as Multiple Sclerosis.
Online presence[edit | edit source]
See also[edit | edit source]
Learn more[edit | edit source]
References[edit | edit source]
- ↑ "May12.org". May12.org. Retrieved March 18, 2021.
- ↑ http://www.meadvocacy.org/about ME Advocacy: About
- ↑ World Health Organization (1969). International Classification of Diseases (PDF). 2 (Eighth revision ed.). Geneva: WHO. p. 173.
Encephalomyelitis (chronic),
(myalgic, benign) 323 - ↑ Carruthers, Bruce M.; van de Sande, Marjorie I.; De Meirleir, Kenny L.; Klimas, Nancy G.; Broderick, Gordon; Mitchell, Terry; Staines, Donald; Powles, A.C. Peter; Speight, Nigel; Vallings, Rosamund; Bateman, Lucinda; Baumgarten-Austrheim, Barbara; Bell, David; Carlo-Stella, Nicoletta; Chia, John; Darragh, Austin; Jo, Daehyun; Lewis, Donald; Light, Alan; Marshall-Gradisnik, Sonya; Mena, Ismael; Mikovits, Judy; Miwa, Kunihisa; Murovska, Modra; Pall, Martin; Stevens, Staci (August 22, 2011). "Myalgic encephalomyelitis: International Consensus Criteria". Journal of Internal Medicine. 270 (4): 327–338. doi:10.1111/j.1365-2796.2011.02428.x. ISSN 0954-6820. PMC 3427890. PMID 21777306.
