If you or your twin have Chronic Fatigue Syndrome (CFS) or Fibromyalgia (FM), Dedra Buchwald, M.D., wants to meet you. More accurately, the Seattle center she directs may need you and your twin to come for a visit.
Fascinating research is being done by this Washington group to discover how genetic and environmental factors may come into play in CFS and FM. Often in medical studies doctors use healthy “controls” for comparison purposes. Researchers compare the controls with the patients to determine any differences that may explain why one group has symptoms and the other not. However to avoid having any more variables than necessary they try to find “controls” who aside from not being ill are somewhat similar to the patient in other aspects, such as gender and age. This can help researchers narrow down differences that may actually contribute to the illness. Thus apart from the ailment the more similar the controls are to the patients the better.
That is why studying healthy twins of CFS or FM patients is particularly useful. After all who is more similar to a person than his or her twin. Studying twins in this context then helps determine more subtle differences between the patient and control, such as life experiences or exposures, which may have contributed to the onset of the illness. Similarly studying family members can help determine hereditary issues that may shed light on these ailments.
So far comparing twins where one has CFS has discounted neurally mediated hypotension (sporadic low blood pressure) as a factor in the ailment. The tilt table test is used to diagnose this kind of blood pressure problem. When CFS patients and their healthy twins were tested on the tilt table, only the same small minority of either group, 19%, tested positive.
A number of other similarities have been found between patients and their twins including sleep abnormalities, cognitive difficulties and impaired exercise capacity. As to differences between the two groups, Buchwald’s studies have noted immune function problems in CFS patients not seen in their twins. Also CFS patients have manifest more in the way of avoidance coping strategies than their healthy siblings.
CFS Cooperative Research Center
Dr. Buchwald has been at the helm of this Seattle center since it was designated by the federal government in 1995 as a Chronic Fatigue Syndrome Cooperative Research Center. There are only three such centers currently in the U.S. One is in Newark, New Jersey and the other is in Miami, Florida. The main benefit from being a CFS Cooperative Research Center is the receipt of large government grants to fund approved research.
One research project being funded at the Seattle CFS Cooperative Research Center is a population-based study of the presence of CFS and CFS-like illnesses in twins. The overlapping conditions of fibromyalgia and depression will also be studied. The effort of this research will be to discover what distinguishes general fatigue symptoms from the U.S., British or Australian definitions of CFS. Investigators also hope to find what extent genetic and environmental factors contribute to CFS or vary between CFS and other overlapping conditions.
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Further on genetics, these investigators are studying children of CFS patients. Specifically this study will compare the fatigue status, functional performance and psychological health of 12 to 17-year-old children of CFS parents with same aged children of healthy parents. Researchers want to know whether children of CFS subjects have higher fatigue levels, lower pain thresholds or worse cognitive function than children of healthy parents. Other questions they want to know is whether having CFS parents predisposes one to the same ailment and, if so, whether the vulnerability results from genetics or the family environment.
Distinctions have honored Dr. Buchwald since her graduation from the University of California in 1981. She benefited from post-graduate medical training at Duke University, South Carolina, and Harvard, Massachusetts, working for a time under Anthony Komaroff, M.D., a leading researcher of CFS. Buchwald is a past president of the American Association of Chronic Fatigue Syndrome and the chairperson for that organization’s January 2001, Fifth International Conference.
Buchwald, who has been researching CFS since the mid-1980’s, has a personal interest in weight lifting and running. Nonetheless CFS and FM sufferers deeply appreciate the seemingly inexhaustible energy she expends trying to find new leads in these illnesses. Buchwald’s dedication is unmistakable as evidenced by her writing extensively on these and related topics. To date she has authored or co-authored almost 80 medical journal articles or book chapters.
Individualized Treatment at the Chronic Fatigue Clinic
In 1988, Dr. Buchwald established the Chronic Fatigue Clinic at the Harborview Medical Center in Seattle. This clinic is designed primarily for evaluation and consultation purposes. This means patients must have their own primary physicians who will receive guidance and input once the consultation process is complete.
As many patients are desirous of evaluations at the Seattle Chronic Fatigue Clinic, there are long waits for the initial appointment. Not all patients even qualify for a visit; a questionnaire that must be submitted in advance helps determine suitability. Then, a physical examination, blood work, and psychological evaluation form the basis of Dr. Buchwald’s recommendations.
Buchwald states that “treatment must be individualized” and may include various kinds of medications. She encourages patients to get sufficient sleep and where appropriate she will refer them to a Sleep Disorder Clinic. Buchwald also stresses that patients “engage in a daily, low-level exercise program with the assistance of a physical therapist.” Other remedies she may hold out are cognitive behavior therapy, acupuncture, massage therapy, or biofeedback.
Twins where one has CFS or FM may be fairly unique. However, the benefits from the research being done involving such persons extends more widely. In fact all persons with CFS or FM stand to profit from the distinctive work of Dr. Dedra Buchwald and her associates.