Susan Kreutzer, is a former attorney who has lived with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since coming down with the flu in 1991. In 2013, she organized a petition drive with other ME/CFS activists to demand the U.S. Department of Health and Human Services (HHS) increase funding for research into ME/CFS, to adopt the Canadian Consensus Criteria (CCC) to define the illness, to cancel the IOM (Institute of Medicine) contract to define ME/CFS, and to officially drop the misleading name “chronic fatigue syndrome” in favor of the term used by the World Health Organization, myalgic encephalomyelitis (ME).
On Monday, December 9, 2013, Kreutzer and a small group of ME/CFS activists gathered in front of the San Francisco Federal Building to protest the IOM contract. Jeff Kreutzer, and Ed Burmeister displayed a seven foot by six foot banner with 3,000 signatures. A second petition also with nearly 3,000 signatures, started last summer by Mary Dimmock was on display, as well as a flag display which Susan arranged representing the home states and countries of those who had signed the petitions – all 50 states, the District of Columbia, Puerto Rico, and 34 countries spanning the globe. The next day, Kreutzer went to Washington, DC, despite a snow storm, to present the petitions to the HHS Secretary. She also delivered the the copies of the petitions to several Comgressman.
Quotes[edit | edit source]
“For people who are in bed, and who can’t get out here, we are going to find a way for you to have a voice.” “We will speak our truth.”
CFSAC Testimony[edit | edit source]
- June 2012, Public Testimony at CFSAC meeting
Online presence[edit | edit source]
- 2013, Video of Susan Kreutzer delivering petition with nearly 6,000 signatures to HHS
- 2013, Article about Susan Kreutzer delivering her petition to HHS
- 2014, San Francisco Gate newspaper features Kreutzer - Findings of brain anomalies may shed light on chronic fatigue
References[edit | edit source]
Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.
myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small 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. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological 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.