Frustrations of a Physician Treating Chronic Fatigue Syndrome
Patricia M. Salvato MD, The Houston CFIDS Herald, March 1996
This year I enter my 11th year of practice. Some call me an HIV specialist while others call me a Chronic Fatigue Syndrome specialist. Although these two groups of patients make up a large majority of my practice, I also have a very active Internal Medicine practice including over 100 nursing home patients. I consider myself a specialist in Internal Medicine. Perhaps no other training would have prepared me more for my future as a practitioner in Chronic Fatigue Syndrome than my Internal Medicine training.
The practice of medicine is an art which is far more than the application of scientific principles to a particular biological model. Its focus is on the patient whose welfare is the continuing purpose. That purpose of medicine is self-evident in theory, but more difficult to sustain under the pressures of medical practice. This is no more true than in the field of CFS which for years has been both ignored and ridiculed by a large part of the medical community.
I was asked to write about the frustration in treating patients with CFS. Many superficial hassles immediately comes to mind--lists of endless symptoms; pages of questions without answers; disability letters and repeat disability letters and repeat disability letters; medical necessity letters to insurance companies; applications for disabled parking permits; letters to families, schools, employer, court, attorneys, and other doctors explaining the physical limitations of patients with CFS. As I think on a deeper level, however, the main frustration seems to center around my feelings in treating the disease rather than the increased work load of endless paperwork and extended office visits. Perhaps the thing that comes to mind most is that as a physician I was taught that to be a "good doctor" was to "cure" disease. The patient comes to the doctor with a medical problem such as a sort throat, you give them an antibiotic, and two days later they are well. In my medical training, little time was devoted to managing the day-to-day care of a relapsing and remitting disease, where no cure was in sight and where patients did not get better over time but also did not die. Yes, I was exposed on many occasions to the dying cancer patient and in more recent years to the dying AIDS patient, but very rarely to the patient forced to live with a chronic debilitating disease that is poorly understood by the medical profession, family, the community, and even the patient's themselves.
In the first five to six years of dealing with CFS patients, I often left the office for the day feeling like a failure. Maybe one out of thirty patients actually would say they felt better. I didn't really get it that they didn't have to feel better for us to have a good physician/patient relationship. What I did learn was that the patients wanted to be listened to, so that their fear and concerns could be fully expressed and the burden shared. They wanted me to be interested in them as fellow human beings in a compassionate but non-judgmental fashion. They expected professional competence incorporating the best in medical science and technology. They wanted to be reasonably informed as to the probable cause of their concerns and what the future was likely to hold. They wanted riot to be abandoned. They did not expect to be cured, only I had expected to cure them. There is a certain mystery here, and it is an aspect of medicine that has been forgotten by too many physicians. Sir William Osler used to teach that if a physician made himself/herself available as a source of hope and strength to the patient, even with an incurable illness, without the use of medicine or fancy technology, these acts of professional skills alone could turn the tide. I believe these things, even though I do not understand them.
Chronic Fatigue Syndrome has been the focus of increasing national and medical attention over the past decade. A growing number of research investigators are seeking to unravel the interrelationship of the psychologic, immunologic, neurologic, and endocrinologic abnormalities associated with this debilitating disorder. Considerable misinformation still exists regarding the appropriate evaluation and management of the patient. CFS has lead to a necessary new paradigm in take doctor/patient relationship, one in which related information and knowledge have become recognized as critically important tools of healing. The nature of this disease and the fact that no single treatment provides a cure--brings doctor, patient, and loved ones into near constant discussion of a bewildering array of therapies. There is no FDA-approved treatment for CFS. However, there are a variety of both symptomatic medication as well as holistic approaches which have empowered people living with a CFS to take charge of their health. The physician must rely on his/her knowledge and judgment in assessing the risks versus benefits of treatment for each individual patient. One of the greatest lessons I have learned in treating CFS has been the realization that well-informed patients simply make better partners in health-care, and, when knowledge is shared, everyone benefits; there is an unbelievable amount of healing in just the sharing of new knowledge.
Chronic Fatigue Syndrome presents a major public health problem for the 1990s, affecting more than a million people around the world. CFS can strike suddenly and linger for years, threatening personal relationships and careers. And devastating a person's life. Still, a large proportion of the medical community refuses to recognize the suffering it can cause. Patients with this disease cope not only with the illness itself but with the high medical bills, insufficient insurance coverage, and a tragic lack of emotional support often from physicians, caregivers, and even loved ones. Social security disability payments are hard to obtain and the fear of their unknown future looms daily.
Another source of frustration in treating CFS patients has come from my relationships with my peer-physicians over the past 11 years. The first 5-6 years were the most difficult, with the last five years a definite trend toward at least receiving recognition of the disease by many physicians. I have found that the best way to "educate" a disbelieving physician about the disease is to actually send them a CFS patient for evaluation of a specific problem, such as gastrointestinal, cardiac, or neurologic. More often than not, the response that I get is "you know, that patient is really sick." I am still amazed when they are so surprised. My own experiences with CFS have convinced me beyond doubt that it is an organic medical illness. I have seen an array of patients from all different walks of life, including housewives, blue-collar workers, athletes, physicians, nurses, educators, accountants, and lawyers. In general, these people had been productive, on-the-go people, cut down in the prime of their lives.
This year has been the most rewarding in CFS, especially in view of the CDC's new role in the recognition of this disease and attempts at dispelling the popular belief that CFS is a benign, self-limited disease that affects only whites with high incomes. Dr. William Reeves, head of the infectious diseases section of the Centers for Disease Control, has reported that only 12% of the patients with this disease ever fully recover. CDC officials have recently added CFS to the list of Priority 1 - New and Emerging Infectious Diseases [listing]. An NIH conference sponsored for physicians treating this disease was held this past year, the purpose of which was to identify outcome measures to be sued in the evaluation of clinical trials. Based on rigorous discussion of outcome measures, clinical studies are now being initiated in this devastating disease. Now more than ever, physicians and scientists are absorbed in scientific efforts to understand the etiology, epidemiology, and pathology of CFS, a complex, multi-system illness. For the physician or researcher willing to tackle this exasperating illness, the payoff is the opportunity to unravel an unsolvable medical mystery and thus preserve the passion of medicine.
I'd like to close by saying that my CFS patients have been a continued source of encouragement to my in my practice. I receive many letters and cards of appreciation from my patients. This past Christmas, I received a book from one of my CFS patients entitled When You Wish Upon A Star. The marker was placed in by a saying by O. S. Marden, which, in my mind, goes to the essence of being a physician treating this disease:
My expectation of something tomorrow is a better understanding of the cause of this debilitating disease and the possibility of a treatment capable of returning patients to their lives and their dignity.
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