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
 

        Thank you for the opportunity to speak with you today about the condition known as Chronic Fatigue and Immune Dysfunction Syndrome or CFIDS. You have already heard testimony that more than 50,000 Americans are affected by this disabling condition. In educating the medical students at Oregon Health Sciences University about CFIDS, I often use a teaching device known as the case history. I would like to present to you a typical case of CFIDS in order to illustrate some of the problems that both patients and physicians caring for the patients face during the course of the illness. In addition, I would ask that vou imagine yourself as the person affected with CFIDS in this case history.

        Imagine yourself as a successful Capitol Hill staffer, a real go-getter who has taken pride in never getting sick. On a trip home to meet with your boss's constituency, you develop a severe case of the "flu." You expect the symptoms to pass, but two weeks go by and you are still exhausted by the smallest physical or mental effort. You have headaches and muscle aches, sort throats and tender lymph nodes, nausea and dizziness, and you find it difficult to concentrate on reading the newspaper, let alone read the Federal Register. You struggle to the office on sheer willpower, visit your physician who suspects that you have had a viral "flu" and runs some basic lab tests which all turn out to be normal. You are told to go home and rest, take fluids and aspirin and expect recovery in the near future. The symptoms decrease somewhat, however recovery does not occur; in fact you suffer a relapse of severe muscle aches and exhaustion with any attempt to increase your daily activity. You are again evaluated by your physician who can find no abnormalities on exam or laboratory testing.

        This is a common presentation for the condition called CFS or CFIDS and let us consider, for a minute the problem presented to this point. You have a significant illness, but the doctor can find nothing wrong. The routine laboratory test do not show any abnormality. It's your word against the laboratory. In this respect, CFIDS is unusually cruel in that it causes significant and disabling symptoms without objective findings. There are no lab tests that establish the diagnosis of CFIDS and there are no tests that correlate with the severity and disability that you, the patient, are experiencing. There are some research studies which indicate immune cell abnormalities, however these are not reliable enough to make a diagnosis of CFIDS. In addition, your physician has no specific therapy which can help you at this point. As a patient, you are in the worse scenario; ill but lacking a firm diagnosis or treatment strategy.

        Returning to your case, your physician suggests that you are suffering from mental exhaustion, a tactful way of implying that you may be depressed. Your physician offers you treatment with antidepressant medication which improves your sleep and you feel a bit more optimistic about your situation, although it provides little relief from the symptoms of fatigue, muscle pain and difficulty with mental concentration.

        At this point, another of the common problems with CFIDS is illustrated. The physician, unable to document a physical illness, resorts to a psychiatric diagnosis as an alternative. In some cases, this may be appropriate, however in your case, the diagnosis and the associated therapy complicate the ongoing evaluation. You probably will be stigmatized by this diagnosis, and it may affect your ability to maintain your job, obtain employment in the future, or get insurance coverage. While any chronic illness may result in depression, CFIDS is not depression and usually does not respond to antidepressant medications.

        Your symptoms persist and you may ask for a referral to a specialist. Your doctor, who is a primary care "gate keeper" in a health maintenance organization, tells you that there is inadequate indication for a specialty referral. After fairly intense negotiation, the doctor agrees to a referral to a specialist. Before the appointment with the specialist, you begin reading about the illness you are experiencing in order to be an active participant in the evaluation. You learn about CFIDS and are prepared to ask questions of the specialist. At the time of the evaluation, the specialist fails to find any specific abnormalities, and tells you that he does not "believe that CFS is really a disease", and suggests that you seek psychiatric care. You are angered, frustrated and depressed by the evaluation, and you are still as exhausted and unable to function as you were before. Your primary care provider has little to offer and can find no specialist who is knowledgeable about the condition, or is willing to see you for a "second opinion".

        You have just experienced the problems experienced by a good number of CFIDS patients. The primary care provider may balk at a referral to a specialist, because the cost of this is taken directly from his or her pool of money in the health plan. Even after you have won a hard-fought battle to see a specialist, you may get little help since the doctor may not acknowledge that CFIDS is a valid diagnosis. Finally, in many areas of the country, there are few if any physicians who are willing to see person with suspected CFIDS. In Oregon, we have only 3-4 persons interested in this condition, and the waiting lists for evaluation are 3-5 months in some clinics. All of these problems result in barriers to access of health care for persons living with CFIDS.

        At this point you are so ill and behind in you work, that you are forced to resign from your position on Capitol Hill. You spend more time reading about CFIDS. You would like to take advantage of complimentary therapies, such a acupuncture for symptoms relief, but find that your health plan will not pay for these therapies. You would also like to enroll in research trials, but find that there are none available.

        Over 80% of the patients we have evaluated in our program are interested in new treatments and would volunteer for clinical trials. In contrast to AIDS or cancer, we have few if any experimental protocols available. There are few pharmaceutical companies interested in developing treatments for this condition. There is a need for the establishment of a national network of treating physicians, similar to the Community Program for Clinical Research in AMS (CPCRA). This would allow community based physicians to participate in scientifically valid research protocols for CFIDS.

        Again returning to your case, You see a psychiatrist who feels that the condition is mostly medical. Your primary care doctor feels that the psychiatrist is wrong, but has no other explanation for the condition and is unable to offer any therapy other than partial symptom control. You are forced to give up all but a fraction of your previous social life which places great strain on your marriage. Because your symptoms persist and you are not able to return to work, you apply for disability. Your private insurance company and Social Security Disability both turn down your application, because there is no definable medical condition as the cause of the disability. You are forced to live on the investments and savings you had earmarked for retirement, and the help and assistance of friends and family.

        The final problem that you face in our case history is obtaining disability assistance. You and your doctor try to get your private insurance company to believe that you are ill and quality for disability. Currently, there is no listing for CFIDS within the Social Security Administration that allows people with a CFIDS diagnosis to automatically receive SSI. In effect, CFIDS does not exist for SSDI. Since most private insurance have criteria similar to SSD, they may also deny benefits based on the lack of objective findings. Patients commonly file several appeals to the initial denial, and suffer a significant amount of stress and frustration in the process of attempting to prove their illness. This commonly produces a worsening of the CFIDS and even greater disability. It is not unusual for the disability appeals process to take 18 to 24 months in Oregon.

        It is my hope that the scenario we have just explored together will never happen to you or any of your loved ones. One of my patients, Mr. Floyd Skloot, while not an elected official, has gone through most of what has been described, and I would like to end with a poem written by him.

[no poem included in text]