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

        My name is Sean Tracy. I'm married and the father of three children. My wife works full time in the insurance industry. One son graduated from college last year, another son is graduating next week, and my daughter will graduate in two years. I used to be a real estate buyer's broker. However, I have not been able to work at any income producing endeavor since mid 1989. Due to illness I can no longer contribute to my family or my community as I used to, either physically or economically. I did not anticipate this kind of "early retirement".

        But, I've not come here today to tell I you any sad stories, though I could, as there are many to be told about this disease. I have come here today to acquaint you with some of the concerns of the thousands of Americans who are literally "stricken" with what is called, for lack of a better name, Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).

        A syndrome is medically defined as a collection of symptoms, which when occurring together, characterize an illness. It is unfortunate for those of us suffering from this particular collection of symptoms that fatigue is so overwhelming a symptom as to have been chosen for the name of the illness. The name tends to trivialize the disease in the minds of many as almost everyone has felt fatigued and readily gotten over it.

        You have probably found yourself at the end of a chapter in a book, and you didn't know what you had just read because you weren't really paying attention. For me, that realization more often comes at the end of a paragraph and sometimes even at the end of a sentence. And even when I am paying attention, getting from the bottom of one page to the top of the next can be an exercise in futility. Some days I can't even follow an episode of Seinfeld on TV! This is not the mental state you would want one to have while advising you on what would most likely be one of the largest financial investments of your life - a real estate purchase.

        Have you ever awakened in the morning feeling like you have been run over by a truck? With flat tires? And a low undercarriage? Every bone, every muscle, is individually discernible. Usually you can attribute that kind of feeling to having, indeed, been run over by a truck, or at least some unaccustomed physical exertion, work or play, of the previous day or days. Usually, too, the feeling is gone by the next day or the day after that. I wake up with that feeling every single day of the year with very little to look back upon as the cause. Though it never goes away, it sometimes lessens somewhat. Feeling like this can certainly dampen one's spirits when anticipating the noise and excitement and activity of a family gathering.

        I don't like to talk about my symptoms. I find it generally non-productive to do so and have never done so before publicly. This is not a case of denial but rather one of ignoral. I have been chronically ill for six years. After some period of time, life has to go on. But here today I am not speaking about only myself. According to the latest government figures developed by the CDC, many thousands of Americans live with this same constellation of symptoms.

        Dr. David Bell, a clinician recognized internationally for his expertise in the diagnosis and prognosis of CFIDS tells me that I am one of his 'sickest' patients and that I am a classic example of CFIDS. He also tells me that based on his experience there is little likelihood of my recovering from this illness and that my symptoms will gradually become worse.

        I am not alone. It has been found that a significant percentage of CFIDS patients remain quite debilitated after treatment while others are treatment resistant and seem to be on a progressive, downhill course.

        In fact, a significant number of the CFIDS population is not likely to become fully participant in life until a cure, or at least an effective treatment is found. And these are not people who are going to die soon. CFIDS is not generally a fatal illness, But we are people who are going to be debilitated (with all the implications of that word) for some time to come.

        Physicians, and the medical industry in general have been prone to dismiss CFIDS as a figment of the imagination. It isn't reasonable that anyone could present with so many symptorns without more evidence of a cause. It is unfortunately a very real illness, but illness with no known cause, an illness with no definitive diagnostic laboratory tests, an illness which most physicians seem unable, or at least, reluctant to diagnose, an illness with no clear treatment protocol, in short, an illness no one wants to have or to treat. The medical community needs more information to deal with this insidious disease.

        CFIDS is too serious a problem to ignore, belittle, deride, scoff at or hide. CFIDS is too serious a problem to let professional egos, interagency squabbling or ignorance get in the way of serious, objective, open-minded information exchange.

        The Office of the Assistant Secretary for Health (OASH), under the leadership of Dr. Philip R. Lee, has played an essential role in raising the awareness of CFIDS throughout the federal government and that in turn has increased the general awareness of the illness in the United States. Dr. Lee, as directed by Congress, chairs the Chronic Fatigue Syndrome Interagency Coordinating Committee (CFSICC). People with CFIDS have taken heart because of the regular exchange of the most up-to-date CFIDS research information among the government agency officials sitting on this committee.

      This is why I hope the CFSICC will be empowered to continue the work they have begun in the government's fight against CFIDS; to continue the consolidation of federal efforts in order that they are not wasted by duplication from agency to agency, to continue the formal dialogue that has been established between the government and the patient and private scientific communities that had previously carried the burden of CFIDS alone. I hope that you will be supportive of Dr. Lee's efforts to formally charter the CFSICC which will give it stability and add further credibility.

        I believe that your support on these issues can move me and thousands of other patients with Chronic Fatigue and Immune Dysfunction Syndrome closer to the findings of a cause, a treatment, and a cure for this debilitating illness.

        I feel confident that after hearing what I and the others have told you about this illness, you will see the reasonableness of the funding recommendations of the CFIDS Association of America and will fully support those recommendations as well as their recommendation as to the continued role of the Office of the Assistant Secretary for Health relative to CFIDS.

        Thank you for your time this morning.