Mary M. Schweitzer, PhD, is an advocate who has been living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since 1994. She stated in a written testimony to Chronic Fatigue Syndrome Advisory Committee (CFSAC): "I first collapsed with 'chronic fatigue syndrome' on October 24, 1994 (although I probably already had it when an outbreak of Epstein-Barr swept Villanova, where I was a professor, in the fall of 1990)".
She has been receiving Ampligen since 1999. After a period where she stopped Ampligen, she had a severe relapse, making her committed to never voluntarily going off Ampligen again. Currently she is in the Ampligen trial with Dr. Daniel Peterson in Incline Village. Mary blogs at Slightly Alive.
Open Letter[edit | edit source]
Talks and interviews[edit | edit source]
- 2011, ME/CFS Alert Episode 14 - Patient Perspectives: Mary Schweitzer
- 2014, Comments before the IOM committee
HHS/CFSAC Testimony[edit | edit source]
- May 2007, Written Testimony CFSAC meeting
- May 2009, Written Testimony CFSAC meeting
- Oct 2009, Written Testimony CFSAC meeting
- May, 2011, Written Testimony CFSAC meeting
- Nov, 2011, Public Testimony CFSAC meeting
- Jun, 2012, Public Testimony for Jun 2012 CFSAC meeting
- Jan, 2015, Public Testimony CFSAC meeting
Online presence[edit | edit source]
Learn more[edit | edit source]
References[edit | edit source]
chronic fatigue syndrome (CFS) - A controversial term, invented by the U.S. Centers for Disease Control, that generally refers to a collection of symptoms as “fatigue”. There have been multiple attempts to come up with a set of diagnostic criteria to define this term, but few of those diagnostic criteria are currently in use. Previous attempts to define this term include the Fukuda criteria and the Oxford criteria. Some view the term as a useful diagnostic category for people with long-term fatigue of unexplained origin. Others view the term as a derogatory term borne out of animus towards patients. Some view the term as a synonym of myalgic encephalomyelitis, while others view myalgic encephalomyelitis as a distinct disease.
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.