Noted Activist Tom Hennessy Passes Away After 25-Year Battle with ME/CFS | Pro Health website | 12 September 2013

From the Pro Health website, 12 September 2013.

On Monday, September 9, 2013, Thomas Michael Hennessy, Jr. passed away in Boca Raton, Florida after a 25-year battle with ME/CFS. He was 59 years old. The family will receive friends at Our Lady of Mercy Catholic Church, 9200 Kentsdale Rd., Potomac, MD on Thursday, September 19, 2013 from 10-11 AM with Mass of Christian Burial following at 11 AM at Interment Gate of Heaven Cemetery. (You can read the obituary here.)

Tom Hennessy’s contributions to the ME/CFS community have been enormous. He was the originator of International ME Awareness Day on May 12th, and founded the advocacy organization RESCIND (no longer online). Although he was severely ill, Tom testified eloquently, and passionately, at numerous national and international ME/CFS conferences and meetings, never failing to drive home the point that people with ME aren’t tired, but sick.

Before falling ill with ME in 1988, Tom was a successful sales and advertising executive in Marin County, California. In spite of what he described as “chronic mono” following a severe flu, Tom continued to work 12-hour days, until a final collapse left him bedridden for 18 months. He never recovered.

On April 15, 1989, Tom was asked, at the last minute, to speak at the first international CFS conference, held in San Francisco, California. In his own words, Tom gave an “in your face” speech, which stole the show. “We are SICK, often deathly ill, and we are NOT fatigued!” he said. “If you do NOTHING else today, then lock the doors, get together and knock heads and come up with an ACCURATE definition and CHANGE THE GOD DAMN NAME!”

This speech catapulted Tom into the national spotlight, and from that day forward he remained a fierce advocate for legitimizing the illness in the face of government and insurance industry attempts to minimize the devastating effects on individuals who contract ME/CFS, as well as its cost to society as a whole.

No one could have stated the case for the eradication of the demeaning name “chronic fatigue syndrome” better than Tom himself, so I am including the full text of his 2011 CFSAC testimony below. His words deserve to be read, and re-read, many times over. In the wake of worldwide efforts to classify ME/CFS as a psychiatric illness, and of the virtual incarceration of Karina Hansen, on the heels of the recent attempt by HHS to redefine ME/CFS out of existence, in the CDC’s continuing failure to adopt an accurate case definition, in the NIH’s refusal to fund research, in the black-listing of medical professionals who seek to treat patients with ME/CFS, and in the subversion of the very agencies and organizations that are supposed to represent our interests, but instead seek to undermine us, Tom’s words still ring out loud and true.

“There are NO more excuses. Slow people need to learn by repetition, so I again say, the theme for now and the future is ‘NO MAS!’ [No More!]”

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