June, 2002 Meeting Notes

by Mary Ronayne, GBPPA Board

On Sunday, June 9, 2002 the GBPPA and the Massachusetts Chronic Fatigue and Fibromyalgia Association sponsored a joint meeting at the Wellesley Community Center. This special program entitled “The Polio Paradox: Uncovering the Hidden History of Polio to Understand and Treat Post-Polio Syndrome and Chronic Fatigue” was presented by Richard L. Bruno, HD, PhD.

Dr. Bruno is a psychophysiologist specializing in chronic conditions, particularly PPS, fatigue, pain and stress. He is Chairperson of the International Post-Polio Task Force, Director of the Post-Polio Institute, The International Center for Post-Polio Education and Research and the Fatigue Management Program at New Jersey’s Englewood Hospital and Medical Center. Dr. Bruno is an associate professor at New York’s Mt Sinai School of Medicine and is recognized internationally as the world’s foremost expert on PPS. He has been treating polio survivors for 20 years.

To a full audience, Dr. Bruno started off with this introduction: “Hi, I’m Dick”. His style was casual, humorous and extremely informative, heavily research-based, authoritative, anecdotal and sobering, yet empowering at the same time.

In his introduction, he told about writing his most recent book (copies were available through GBPPA for a reduced rate, one was given as a door prize, all were sold) entitled “The Polio Paradox: What You Need To Know”. In preparation for writing his book, Dr. Bruno explained that he looked extensively into the past, reading all the research of the 1940s and 1950s about the original polio virus and then all the research about PPS, and to his distress he discovered several known facts about the polio virus and how it really affected the body that ran counter to “popularly held beliefs” of both the medical professionals and the public at large. These polio contradictions or “paradoxes” have, in his learned opinion, set the stage for the development of PPS. PPS has already developed “paradoxes” around it that he feels have led to lack of appropriate and timely treatment, if not to abusive treatment, of polio survivors. Dr. Bruno presented a strong case for a link between the polio vaccine (not virus) which eliminated the polio virus through antibody production to the surge of other viruses like coxsackie and echo for Chronic Fatigue Syndrome (CFS) and hepatitis C and coxsackie B for Fibromyalgia Syndrome (FMS). As reported polio cases declined, we saw an increase in or discovery of CFS and FMS. These were viruses similar to polio, causing symptoms similar to PPS and the same ongoing problems, particularly fatigue, muscle pain, sleep disorders and slowed thinking present in all three syndromes, supporting his findings.

The slide presentation from which he spoke covered in depth how the past influences the present and how medical professionals need to wake up to a “new yet old” reality and that survivors must take care of themselves, listen to their bodies and follow the Golden Rule which, though well-known to polio survivors coping with PPS, bears repeating:

If anything causes you fatigue, weakness or pain, don’t do it, or do much less of it!”

Dr. Bruno reminded us that there are two conditions that you are not allowed to be disabled by in this country, and they are fatigue and pain. That comment, as you might well imagine, led to many sighs and, not surprisingly, to laughter as well. The paradoxes he presented to us are ones that we have lived, heard of or maybe even believed ourselves, so going away from the presentation we were left with much to ponder. It seemed especially poignant that Dr. Bruno concluded his presentation with the following:

Don’t let this be your epitaph:
“I knew what I needed to do,
but I did nothing to help myself”.

Before leaving, Dr. Bruno very graciously answered several questions posed by the audience. The questions dealt with several subjects including explaining the characteristics of the three polio viruses, exercise pros and cons, dietary considerations and caregiver issues.

Dr. Bruno’s book, “The Polio Paradox: What You Need to Know” is published by Warner Books. Its cover price is $25.95 and is available from Amazon.com. Both Barnes and Noble and Waldenbooks will gladly order it for you. The book seems well worth the price for its in-depth and thought-provoking handling of a subject near and dear to all of our hearts. It is impossible in this brief overview to do Dr. Bruno justice for his presentation and his long-standing and ongoing work on behalf of polio survivors and those suffering from other chronic conditions.

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