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.
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.  She has made FOI requests to get information as well. 
Spotila is the author of the well-known "PEM Series." 
She has been nominated for the WeGoHeath Best in Show:Blog award three times. 
HHS/CFSAC testimony[edit | edit source]
- May 2009,Public Comment for May 2009 meeting
- Sep 2010, Public Comment for September 2010 meeting
- Apr 2010,Public Comment for April 2010 meeting
- May 2011, Written testimony for May 2011 meeting
- May 2013, Public Comment for May 2013 meeting
- Dec 2013, Public Comment for December 2013 meeting
- Jun 2014, Public Comment for June 2014 meeting
- Dec 2014, Public Comment for December 2014 meeting
- Aug, 2015Public Comment for August 2015 meeting
Online presence[edit | edit source]
See also[edit | edit source]
References[edit | edit source]
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 1990's, 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 can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among 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.