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

MEadvocacy is a project of, 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.

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