Thomas Hennessy, Jr.

Thomas Michael Hennessy, Jr. (1954-2013) lived with and advocated for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). He is known for founding the International ME Awareness Day on May 12th, as well as the (now-defunct) advocacy organisation RESCIND.

Life

Early Life

Thomas was born in Scranton, PA. He grew up first in towns across the Northeast, before moving with his family to Japan at the age of 14. After graduating from St. Mary's International School in Tokyo, Japan and then Fairfield University in Connecticut, Thomas had successful careers in sales and the service industry.

Illness

Thomas became ill with ME/CFS in the autumn of 1987, after a severe bout of the flu.

Advocacy

RESCIND

Rescind, an acronym for Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases, was Tom's organization to bring previously unassociated diseases with most unrecognized commonalities under one umbrella. He was the (among the?) first to group CFS/ME with fibromyalgia, Lyme Disease, Multiple Chemical Sensitivities and Gulf War Syndrome and having underlying (possibly the same) physiological issues related to neuro-immune systems.

International ME Awareness Day

Tom was the founder of international awareness day for Invisible Illness, May 12^th.  In an interview with Cort Johnson (2008) Tom said, “After reading Byron Hyde’s great book on the history of Myalgic Encephalomyelitis, I decided to lookup his hero's Birthday, and lo and behold, May 12th was Florence Nightingale’s birthday. (...) I decided that her birthday May 12th would be the day."

Death

Following a 25-year battle with ME/CFS, Thomas took his own life on September 9th, 2013, in Boca Raton, Florida.

HHS/CFSAC Testimony

• Written Testimony for May 2011 meeting

physiological Concerning living organisms, such as cells or the human body.  Physio logical (as in physio) is not to be confused with psych ological (emotional stress).

myalgic encephalomyelitis (M.E.) - 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.