About MEadvocacy.org

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MEadvocacy is a project of May12.org

May12.org is 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). As such, donations from USA citizens are tax deductible as allowed by law.

 

Mission: to Advocate for Recognition, Definition, & Research
for Myalgic Encephalomyelitis

 

CAMPAIGNS

Our current goals are to promote and support activities such as:

  • Advocating for Myalgic Encephalomyelitis to be 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.

  • Promoting adoption of the ME experts’ definition International Consensus Criteria (ICC) for diagnosis and research.

    Chronic fatigue syndrome (CFS) as defined by the Fukuda criteria and systemic exertion intolerance disease (SEID) as defined by the IOM criteria are overly broad umbrella definitions which are not specific to ME.

  • Securing government funding to study ME as defined by ICC, at a minimum of $250 million annually – an amount on par with similar diseases such as Multiple Sclerosis.

    Currently, US National Institute of Health (NIH) funds studies which use non-ME criteria (Fukuda, IOM/SEID) for cohort selection. The use of these overly broad criteria causes harm to patients with ME. A good example is the UK’s PACE Trial, which resulted in ineffective and harmful therapies of cognitive behavioral therapy (CBT) and graduated exercise therapy (GET) applied inappropriately to people with ME.

 

FINANCIALS

MEadvocacy is an all-volunteer organization and is a project of May12.org.  All donations from USA citizens are tax deductible as allowed by law. May12.org is a 501(c)(3) not-for-profit corporation founded in March 2012.  

Funds are used to support MEadvocacy and May12.org activities including website fees, advocacy projects, and reimbursement for related miscellaneous expenses.

 

VOLUNTEERS

Advisory Committee

Joni Comstock, Colleen Steckel, Tracey Ann-Tempel Smith, Gabby Klein

Volunteers

Olga Pinsky, John Gabor, Alison Orr, Jerry Seidel, Kathryn Stephens, Dorothy Camenzind, Jeffrey K Nantz, Connie Faast, Lauren Leonard, Wendy Boutilier, Lisa Petrison, Monica Radtke, Jenna Jarosinski, Kelly Irene, RJ James, Amy McLaughlin, Rhonda Williams, Colette Christianson, Pam Lutey.

 

GENERAL CONTACT

For website issues, or questions or concerns not answered elsewhere, this is a general contact address for the site admin.

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