HEALTH ETHICS TODAY

Volume 11, Number 3, November 2000

In the first person: Jim's story

On September 3, 1990, I became sick with a 'flu', which changed my life dramatically. The illness persisted and became chronic over months and years. I would like to discuss the combination of usual medical care and "complementary medicine" that helped me during this time. I have been very lucky in the quality of care that I have received from both systems.

A year after I became ill, one specialist expressed frustration to my family physician on the phone. "Your patient has Chronic Fatigue Syndrome (CFS). We don't really understand it and we have little to offer to treat it." He described his frustration over how extremely ill CFS patients tend to be; the lack of objective diagnostic measures; and the lack of effective treatments. Several of his patients with CFS had committed suicide that year and this caring physician was frustrated by his inability to help.

With illnesses like CFS physicians get stuck. Patients are desperate for any relief and beyond that want to recover their lives. But CFS is a "syndrome", a constellation of symptoms and history that point to a condition rather than a defined disease with known causes and objective markers. After I became ill, I had many blood tests, a colon scan, a brain scan, and then more blood tests. Only one blood test showed an abnormality of questionable importance. Yet my family physician, and the other doctors, who tried to treat me knew that I was seriously ill as I dragged myself around, slept enormous amounts, suffered night sweats, fevers and diarrhea. I had trouble concentrating and even trouble talking, to name a few of the symptoms.

The various physicians that I consulted helped me by respecting me, by acknowledging how seriously ill I was and by striving for answers. My family physician read the CFS literature but there were few answers there. He did all the tests that he could think of. Another doctor tried all the therapies that had worked with other cases of chronic fatigue.

These physicians might be surprised to know that from my point of view, their most helpful treatment came from their detailed disability reports that enabled my family to have financial support. Insurance companies are notoriously wary of CFS cases but I had few problems. Having an income has made my life bearable but not many patients are so lucky. Much credit goes to my physicians' excellent medical reporting--a task that few doctors' relish.

The specialist also gave me another major "treatment" which was the chance to participate in a drug study. To leave my bed and to feel that I was contributing to an understanding and maybe even a cure for my illness was a great gift. It was incredible, after many months of isolation and stagnation, to have people interested in investigating my illness. It was exciting too because during the study the researchers in this study of prednisone as a treatment for CFS were sure that they had a winner. There seemed to be a marked improvement in many CFS patients during the study. When the study results were analysed it turned out that the cause of the improvements was not the prednisone. The improvements occurred similarly for those taking prednisone and for those taking the placebo. Why many CFS patients improved clinically while they were in the study is not absolutely clear. Modern medicine seems to disdain placebos but the care and concern given to patients has an enormously powerful effect. This communication of concern and care, and compassion for a patient is very effective medicine (which we may label the placebo effect in many standard research protocols).

During this time I continued to get worse. I tried a number of other conventional and alternative treatments but they had little or no effect.

A friend then suggested that I try acupuncture. By using a different set of diagnostic techniques that don't correlate at all well with the science-based concepts of medicine, the acupuncturist (also a physician) diagnosed a number of "energy imbalances". He then began treating them with various traditional Chinese remedies. I stopped getting worse and after six months of treatment I actually started getting better.

This doctor taught me some meditation techniques (called Qi Gong) that included patterned breathing and visualizations that traditional Chinese physicians have found clinically to improve health. Eventually he even asked me to help lead a qi gong group once a week for his other patients-and for his fellow practitioners. This was an amazing opportunity - I was able to contribute to the health of others while fostering my own health.

Over six or seven years I have seen a very gradual improvement in my health. As well, on the days that I have acupuncture and do the group meditation I feel much better. Unfortunately, those benefits are short term but they do allow me to see that such improvement is possible. There is no doubt for me, or for those who know me, that for whatever reasons the acupuncture and qi gong have been extremely helpful.

I recently went to act as a practice patient at an acupuncture course for medical professionals. The doctors in the course would not have been able to find anything objectively wrong with me if they used their usual diagnostics. Using traditional Chinese diagnosis based on thousands of years of clinical experience in China however they were able to diagnose several major imbalances, and to immediately come up with a treatment plan.

The paradigm of science-based modern medicine is very powerful in many situations. It sees me, the patient, principally as a biochemical being whose illnesses can be treated biochemically. As yet, the biochemical view doesn't address my condition very well and conditions like CFS illustrate the limitations of the paradigm.

Traditional Chinese Medicine sees me as an energetic being whose illnesses can be treated energetically. Fortunately being seen and treated from this paradigm helps me.

It was my good fortune that my doctors were not antagonistic to my acupuncturist and he was not antagonistic to them. Such mutual respect is certainly beneficial but sadly not universal. The practitioners of different methods of healing often dismiss each other, undermine their patients' faith and trust and possibly their patients' ability to benefit from treatment.

I have great respect for the physicians who have cared for me and I have felt well cared for by them. Their contribution to my health, however, has been largely in terms of concern and supportive care. Biochemical based therapies have had little to offer to me.

I have also been fortunate to experience acupuncture and Qi Gong. This clinical Chinese healing method has helped me on my path to recovery.

Jim Elphinstone was formerly the Family Support Coordinator at Alberta Vocational College in Lac La Biche. He continues to recover from Chronic Fatigue Syndrome.

 

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