Jennie Spotila

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Jennie Spotila has been living with ME/CFS since 1994 and is an advocate who previously practiced law. She blogs at Occupy M.E. She served on the Board of Directors of The CFIDS Association of America (now called Solve ME/CFS Initiative) from 2006 to 2011, and as Chairman in 2008 and 2009. She has testified before the Chronic Fatigue Syndrome Advisory Committee on multiple occasions.[1]

She has worked with other patients and patient advocates to accomplish tasks and find out information, such as when everyone wanted to know about the IOM committee, as patients did not have information ahead of time. [2] She has made FOI requests to get information as well. [3]

Spotila is the author of the well-known "PEM Series." [4]

She has been nominated for the WeGoHeath Best in Show:Blog award three times. [5]

HHS/CFSAC testimony[edit | edit source]

Online presence[edit | edit source]

See also[edit | edit source]

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Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) - Chronic Fatigue and Immune Dysfunction Syndrome is another term for Chronic Fatigue Syndrome, but one which emphasizes the immunological aspects of the disease. Popular in the 1990s, this term has apparently fallen into disuse.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

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.

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.