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By D. Zucker

From Fall 2009 Forum

If good fortune were doled out based on merit, community service, or humanitarian efforts, Thomas M. Hennessy Jr. would be the luckiest among us. Instead, he is trying to live through what is, for many of us, the worst imaginable nightmare. As if struggling with this disease year after dreadful year weren't curse enough, his life has become a terrifying "There but for the grace of God…" At the end of April Tom was in a major car accident. He suffered multiple fractures to his ribs, neck and spine.

Like many of us, Tom's disability benefits over the years have barely covered his medical expenses — the premiums, deductibles, co-pays, etc. — much less the luxuries of rent, food, and utilities. Almost a year ago, Tom had to leave his home in Maryland, the only residence he's occupied since he got sick over two decades ago. He managed to get to Florida, because a friend there offered a temporarily unoccupied apartment from which to figure out what to do next. A few months later he suffered a severe relapse, and then the car accident. Now he is stranded indefinitely in a place where he knows almost no one. Tom has as many friends as anyone I know, but most of us can't even do our own grocery shopping, much less fly to be at his side.

Tom's neurosurgeon says the crushed vertebrae seem to be healing slowly, so back surgery may be avoidable. Braces help support his head, neck and back. After several weeks in the hospital, he was transferred to a nursing home, to which he signs over all federal and state benefits, in exchange for which he has been made a ward of the state. Any personal expenses, from telephone minutes to a set of pajamas, are supposed to come out of a stipend of $30/month. Transportation to the neurosurgeonís office alone costs $60. Consults with nursing home doctors are infrequent, and focus mainly on physical therapy. The relevant aspects of CFIDS/ME are not subjects of much experience or interest.

Tom's hard work and multiple achievements can be found at He founded RESCIND based on the belief that Myalgic Encephalomyelitis, Fibromyalgia, Multiple Chemical Sensitivities and Gulf War Syndrome were different ailments with common causes. His father was a professional lobbyist, so Tom knew his way around the Washington, D.C. machine, and was one of our first — and always unpaid — lobbyists, dragging himself to offices and meetings, banging on doors, shaking hands endlessly, all of it despite being grossly disabled himself. He has been adamant about and worked toward the name change since 1988. He originated the establishment of May 12 as International Awareness Day. He has received over 10,000 letters from patients all over the world, met with researchers and clinicians at dozens of conferences, taken thousands of phone calls at all hours, and received and sent out countless faxes and e-mails in his constant support and advocacy for patients everywhere.

Now he needs our help. But not because we owe it to him — that suggestion would offend him greatly. In fact, even the proposal of this notice and the obvious need for financial help were met with the arguments that "Everyone who has this is already broke", and "Even healthy people, in this economy — they're strapped too." All he has asked for are prayers. You can help additionally, though, even if just by passing this plea on to someone else. If you or anyone you know live in the Boca Raton area, perhaps you could make/suggest a short visit, or help with an errand, or transportation to the next scheduled bone scans. If you know of a local organization, advocate, or physician at least sympathetic to CFIDS/ME and/or chronic pain, sharing that information could be more important than you realize. And as the weeks have worn on, Tom has finally agreed to the establishment of a Hennessy Fund, because he is out of alternatives. If you are able to help, please do it now, while it might still make a significant difference. No amount is too small.

Since Tom's condition is still quite fragile, and his current place of residence uncertain, (he has already been moved from one nursing home to another), I have set up a dedicated e-mail account and will forward printouts and snail mail to him. Please send notes or information by e-mail to:

Snail mail: Tom Hennessy Jr., c/o Danya Zucker, 1966 Orchard St., Eugene, OR 97403

Contributions should be sent to The National CFIDS Foundation (NCF) for the Hennessy Fund. They are all tax deductable and 100% of donations will go toward helping Tom in his time of need. Tom will know about each contribution unless, of course, if the donor wants to remain anonymous which we respect.

If you live in the Baca Raton, Florida area or know someone who can offer assistance, please call or e-mail the NCF. Together, we should be able to honor this man who has given so much of his life to the patient community.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606