Patient Support Groups To Continue Legacy By Demanding Increased Awareness, Research and Medical Treatments; PANDORA Org Schedules Global Memorial Service September 29
September 20, 2013 (Newswire) - 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. In 2008, Hennessy gave a revealing interview to Cort Johnson with Phoenix Rising. Hennessy vehemently shared his views on how to engage government decision-makers and the medical community
"The system is COMPLETELY stacked against us," Hennessy told Johnson. "I have been labeled as 'angry' - damn straight - what the average ME/CFS patient has been through is a crime against humanity."
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. "Our corrupt congress has allowed big donors to write laws that say 'if you are physically ill, they have to pay you disability until you are age 65! - but if you are declared MENTALLY ill, they can either deny your claim completely, or just pay you two years TOTAL, and then they can let you starve to death.'"
Hennessy's complete interview is available at: http://phoenixrising.me/interviews-3/10317-2
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: https://www.facebook.com/events/414025958719718/
"Tom changed the landscape of advocacy for this disease because he shown what one man's voice could do," said Chapo-Kroger. "He constantly lobbied for a unified voice and showed others that their voice mattered. Tom was the father of International May 12 Awareness Day, chosen because Florence Nightingale, came down with a similar illness after taking care of the soldiers in the Crimean War. May 12 was her birthday. "
About PANDORA Org
PANDORA Org is a national nonprofit organization seeking to alleviate the suffering caused by neuro-endocrine-immune diseases (NEIDS), including ME/CFS, fibromyalgia syndrome, multiple chemical sensitivities / environmental illnesses, chronic Lyme disease and Gulf War illnesses through the following efforts:
• Advocating for improving patient quality of life
• Community awareness projects
• Patient education programs and conferences
• Physician education programs
• Research grants
• Partnerships with other patient organizations
• Collaborations with academia and biotech industry
Pandora Org advocates for and works toward establishing centers of excellence for research, clinical care, physician education and government services assistance for NEIDs patients and their families. For more information visit: www.pandoraorg.net.