Chronic Fatigue Activist Dies In Boca Raton

BOCA RATON, FL ( — A man considered to be as dedicated as he was controversial in his fight for recognition of Chronic Fatigue Syndrome has died in Boca Raton.

According to representatives for Thomas Michael Hennessy, Jr:

Patients around the world suffering from neuro-endocrine-immune diseases such as Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) and Gulf War Illness (GWI) and Lyme Disease are lamenting the passing of devoted activist Thomas Michael Hennessy, Jr. The Boca Raton, Fla. resident battled ME/CFS and Lyme disease for 25 years and was noted for establishing the May 12 International Chronic Fatigue Syndrome Awareness Day, spearheading several aggressive national advocacy campaigns, and being an outspoken champion for patient’s rights.

“Tom brought his marketing and public relations talents to the advocacy of neuro-endocrine-immune diseases,” said Lori Chapo-Kroger, RN, PANDORA Org President.  “His concept of a lobby and awareness day for these illnesses is now commonly observed by patient advocacy organizations around the world, including our organization. Tom was one of the firsts, before most scientists, to recognize that Gulf War Illness is similar to ME/CFS. Because of the similarities among the diseases, the necessity to reduce misconceptions, and the call for a stronger activism voice, Tom conceived of advocating for all of these illnesses together, along with fibromyalgia, environmental illness and chronic tick-borne infections. He suffered from quite a few of these ailments for many years.”

Myalgic Encephalomyelitis, commonly known as Chronic Fatigue Syndrome, is a complex disorder characterized by profound fatigue. Despite two decades of intensive research, the cause of ME/CFS remains unknown and no treatment is available, only palliative care. Currently, there is only one drug, which has been stalled in the FDA pipeline for more than 20 years, and some 4000 patients have petitioned the FDA to approve it.

More than 17 million people worldwide, including four million in the United States, are estimated to have ME/CFS. A quarter of all patients are entirely house-, bed- or wheelchair bound. One in ten dies prematurely due to major organ failure, cancer, heart disease or suicide.  The enormous economic impact in the United States is estimated to be more than $14 billion per year in healthcare costs and loss of worker productivity.

Although he was severely ill, Hennessy founded the advocacy organization RESCIND and testified at numerous national and international ME/CFS conferences and meetings with energetic and direct messages confronting the overwhelming stigma attached to ME/CFS.

“We are SICK, often deathly ill, and we are NOT fatigued!” Hennessy said during the first international ME/CFS conference in 1989.

Over the years, Hennessy’s commentaries were featured in numerous news articles, and he made appearances on Larry King Live.
Hennessy even challenged the name “Chronic Fatigue Syndrome” and supported hard-hitting tactics to address the myriad of issues facing ME/CFS patients.

“The big multinational insurance companies have literally billions of dollars invested in portraying us as mentally ill malingerers who are out to defraud them,” he said.

Tom Hennessy, courtesy Phoenix Rising.

Tom Hennessy, courtesy Phoenix Rising.

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

The 59-year-old succumbed to ME on September 9 in Boca Raton. The funeral mass for Hennessy was held September 19 at Our Lady of Mercy Catholic Church in Potomac, MD.

PANDORA Org will hold a global phone-in memorial service on September 29 at 4:00 p.m. EDT. Chapo-Kroger said details are available on the organization’s Facebook page:

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