HOPE FOR CFS VICTIMS 


It was an honor for the second time to address the Washington D.C summer meeting of Secretary of Health and Human Services Advisory Committee on Chronic Fatigue Syndrome (CFS). My testimony was on the behalf of hundreds of thousands of people like myself who love one of the victims of CFS. I have had 25 years in that role. It started when my daughter Laura Hillenbrand and her then boyfriend now husband Borden Flannigan were at Kenyon College. She was in her second year had a 3.8 GP student and athlete She was suddenly struck with an undiagnosed ailment that forced her to return home. In a prize-winning story called A MYSTERIOUS ILLNESS. she describes the nature of her illness . In this primer on CFS she describes the hostile atmosphere at that time including confusion of the disease with AIDS. There was also the derisions which called it YUPPIE FLU or attributed it to psychological causes.

We have come a long way from those hostile times. However we still do not have an effective diagnosis and appear to be at a snails pace in finding a cure. My aim is to bring new hope during these doldrums based my experience with battles against other diseases. One of the oldest and most outstanding was the “MARCH OF DIMES” that resulted in the near elimination of polio. I recounted going door-to-door collecting dimes at the height of the Great Depression in an age when ten cents would buy a loaf of bread, a pack of cigarettes or one gallon of Gasoline.

Later I served as a Chaplain at Walter Reed Hospital whose name honors the great victory over Yellow Fever. This was at the early days of AIDS epidemic. AIDS victim from all the services came to this hospital. My first patient was a very young man who had just joined the Army. He was given a whole series of vaccinations against various diseases. We did not know it then but AIDS disables the immune system. I can remember placing a cot next to the patient's bed so that his mother could bring him comfort in his final hours. We now have a very simple diagnosis for a consisting of a mouth swab and a cocktail of drugs greatly prolong the lives of victims.

At the present time under the 21 year leadership of my friend Kimberly Mc Cleary Director of the CFS ASSOCIATION has launched a new research effort called Research Institute Without Walls. One of their missions is to explore techniques, procedures and drugs that have been successful in other diseases to test their effectiveness against CFS. Since this effort is funded by victims their caretakers and their support group it survives by very small gifts. I want to call this the “New March of Dimes” The ten cents that used to buy a gallon of Gasoline now costs four dollars. There are also other support groups that are doing worthwhile work and it is so encouraging to find them working together.

The most moving testimony at the hearings was from very young school-age boys and girls and their parents. Through no misconduct on their part they are living with the great suffering of CFS. The chairman of the advisory group was moved to remark “Because you have CFS today does not mean that you will have CFS tomorrow.” This is an appropriate American Battle cry of hope and confidence. It is based upon past success. I took the occasion then and I take it now to say to daughter Laura, to Borden and other CFS Victims that I love that you have my personal pledge to do all I can to find a cure. I am confident that a similar pledge is also being given by the hundreds of thousands through out the world who have someone they love who suffers from CFS.. Amen.

Rev. Bernard F. Hillenbrand








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