Provided courtesy of Mary O'Connor, CompuServe Chronic Illness Forum.
Original Source: Congressional Record, May 12, 1995

This is testimony at a House and Senate Briefing sponsored by Representative John Edward Porter (R-IL) and Senator Harry Reid (D-NV). The Moderator was K. Kimberly Kenney, Executive Director, The CFIDS Association of America

        Good morning. I am happy to be able to speak with you today, to bring a message of urgency from the many Americans of every age, race, and gender, who, at this moment, are living with the devastation of Chronic Fatigue and Immune Dysfunction Syndrome. This illness, which robs us of our independence, our sense of self, and our control over our bodies and our lives, truly must be seen as a national crisis, draining our skills and resources from our nation at a time when they are crucially needed.

        Thirteen years ago, I could never have imagined the extent to which CFIDS could circumscribe my life. At that time, I was happily working toward completing my Ph.D. in Physics at Howard University here in Washington, teaching Physics classes at Howard and at the University of the District of Columbia, working in a research group at what is now the National Institute of Standards and Technology, and raising two wonderful children. I loved my work, and I looked forward to a long academic career, filled with students and research in an exciting and rewarding field.

        Today I am totally disabled. I have been completely unable to work for the past eight years, incapacitated by an array of symptoms of which 'fatigue' is only a small part. For me, the in cognitive dysfunction which accompanies this illness has been the most heartbreaking. I have always had a deep love of learning and, even as a high school student, I spent many hours here on Capitol Hill at the Library of Congress. Now I am often unable to read the simplest books, and, even when I can read, I may forget the content of what I have read almost immediately.

        Like many people with CFIDS, instead of doing the work I love, I now receive Social Security disability. For most people with CFIDS, the income we receive from Social Security is essential for the well-being of ourselves and our families, but the idea of being a disabled person is almost unbearable. Although some of us have been fortunate enough to encounter Social Security personnel who are familiar with our illness, for many others the process of applying for disability has been a humiliating one. We ask that all Social Security personnel be provided with the most up-to-date, accurate information available concerning the disabling aspects of CFIDS, in order to expedite this painful process.

        Although my own experience with CFIDS has been difficult, nothing could have prepared me for the shock, four and a half years ago, when my daughter developed CFIDS at the age of 14. Young people with CFIDS have the additional burden of developing maturity, social skills, and a sense of identity, while simultaneously struggling with a confusing, unpredictable, poorly understood illness. My daughter had to discard any preconceived notions about her high school career and learn to manage her life within the constraints of her illness without becoming bitter or defeated. I am deeply proud of her struggle and the struggle of the thousands of young people nationwide living with this illness.

        One of the most critical needs for those living with CFIDS is the development of effective methods of treatment. Because there is no clear understanding of this illness, most treatment is symptomatic, and the results are highly unpredictable. There are medications which are helpful for my daughter which are useless to me. More widely effective treatment for people with CFIDS can mean the difference between a productive life and a life of dependency, the difference between surrendering to despair and continuing to struggle. We hope that you will provide adequate funding to those researchers pursuing new treatment methods, and that you will urge the Food and Drug Administration to expedite the testing and approval process for promising new drugs. My daughter and I have been more fortunate than many people with CFIDS; we live in a major city and were able to find a skilled and compassionate doctor who is knowledgeable about CFIDS. Throughout America, in each of your congressional districts, there are many people with CFIDS who have not yet been diagnosed, and who struggle through life in confusion and shame, often blaming themselves for their disability. Their doctors may be misled about CFIDS. Many overworked physicians who serve minority populations erroneously believe than CFIDS is not a major problem for their patients. Many doctors in rural areas are isolated from the latest information. Our public health officials must make sure that every doctor understands that CFIDS does not discriminate - every ethnic group, every income group, every region of America is affected.

        The community of people with CFIDS is filled with courageous men, women, teenagers and children whose deepest desire is to return to a productive life and to make a contribution to their families, their communities, and their country. I long to stand in front of a classroom again, helping young men and women explore the beauty of mathematics and physics. My daughter, in spite of her uncertain future, has just completed her freshman year at Clark Atlanta University with a major in Social Work. Every day, when she forces herself out of bed in spite of excruciating pain, numbing exhaustion, and a nightmarish mental fog, she does so as an act of faith - faith that her country will see her struggle and will allocate the necessary resources to insure that this devastating illness will be understood and controlled. I ask you to justify her faith by your actions.