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by David Bell, MD - Vice President of the AACFS with Charles Lapp, MD - AACFS Board Member
August 1, 1999
In a recent edition of the Annals of Internal Medicine, Drs. Barsky and Borus wrote a review entitled "Functional Somatic Syndromes" concerning poorly defined illnesses such as chronic fatigue syndrome (CFS), fibromyalgia, and Gulf War syndrome. The approach in this paper is that these illnesses are "self-diagnoses," and that the suffering of these patients is little more than a "self-perpetuating, self-validating cycle" that is encouraged by "sympathetic physicians." The effect of this cycle is that it acts by "reinforcing the patient's belief that he or she has a serious disease."(1) The implications of this paper include the assumption that these are trivial illnesses, perhaps best treated by being ignored. As America's largest association of physicians and allied health professionals devoted to the study and management of CFS, The American Association for Chronic Fatigue Syndrome would like to counter the arguments of Drs. Borus and Barsky.
Firstly, it should be obvious that the existence of an illness, is not dependent upon knowledge of etiology. Many illnesses such as rheumatoid arthritis and multiple sclerosis are recognized, accepted, and compassionately treated by physicians without a good understanding of cause. The arguments of this paper revolve around the lack of a reliable, objective marker that can accurately identify CFS and other somatic illnesses. The lack of this marker can be argued to be unimportant. For example, we accept the existence of migraine despite the lack of blood tests or x-rays that prove its existence. The lack of a simple diagnostic marker may be a sign that the research is in its infancy; but the assertion that there are no markers to identify or study CFS is incorrect.
Perhaps a methodological mistake by physicians seeking to treat CFS has been an eagerness to jump to etiologic conclusions prematurely. Epstein-Barr virus (EBV), enterovirus, candida albicans, and many others have been examined and fallen short in the search for cause. This approach was doomed to failure and has now been appropriately been put to rest. But this advance alone is proof that the process of science is fundamentally sound, and the inability to find an etiology should not cast doubt upon the existence of a clinical condition. Physicians who know their patients are able to, assess whether the "sick role", litigation, or self pity is the underlying issue of importance. Within the AACFS, the majority of health care providers are not, satisfied with this simplistic concept.
Research has shown many abnormalities, even in standard blood testing (2). Immune complexes, and markers for inflammation can be abnormal (3). Studies have demonstrated natural killer cell and cytokine abnormalities. MRI studies and SPECR scans show abnormalities in many patients with CFS. Hypothalamic-pituitary-adrenal axis abnormalities are emerging as an important area of new research. Textbooks describe disabling fatigue associated with orthostatic intolerance, and a majority of CFS patients have postural tachycardia, postural hypotension, postural narrowing of the pulse pressure, or de- creased circulating blood volume. All these abnormalities represent discrete physiologic markers whose ultimate role in CFS remains to be clarified. Unfortunately, none of these tests are sufficiently sensitive or specific for use as a diagnostic test. These are problems to be overcome but should not be used as evidence that the illness does not exist.
There are several reasons that, despite laboratory abnormalities, a simple diagnostic test is not available. It is possible that CFS is a heterogeneous group of illnesses. We have been approaching the study of CFS with a strict reliance upon blinded studies to arrive at the standard of "statistical significance". If CFS turns out to be heterogeneous, these studies will only show trends. In one study there may be an increase of antibodies or viral products to enterovirus. In another, an increase in EBV markers. These conflicting studies have been helpful in our understanding of the illness - there may be differing triggers. It is inappropriate and short-sighted to conclude absence of illness from the conflicts. The lack of replication in the immunological studies needs ultimately to be explained, but to say that there are no abnormalities described in CFS is absurd.
The relationship between CFS and the emotions has always been a difficult area, but who said that research was supposed to be easy? Clearly CPS is not straightforward depression, psychosis, or panic disorder. If it is psychogenic, its definition needs to be clarified and the heterogeneity needs explanation as much as physiologic heterogeneity. Drs. Barsky and Borus state that somatic illnesses represent "sub-threshold psychiatric disorders." This explanation hardly describes an illness that can cause such profound disruptions of daily activities.
The problem with the review by Dr. Barsky and Borus is that it magnifies the difficulty faced by researchers seeking funding and the distress of patients who are seeking adequate basic medical care. By saying that sympathetic physicians are encouraging the persistence of the symptoms of CFS is both insulting and intimidating. Modem medical economics and the discrimination of the insurance industry make medical care for disabled persons with CFS very difficult. It is possible that the opinions expressed in this paper will serve to justify practicing physicians to dismiss these patients who are time consuming and difficult to treat. To ignore them for the simple and economically profitable sprained ankle or sore throat is to neglect the fundamental ethics of our profession.
CFS and other somatic illnesses are only beginning to be understood, and recognizing this illness in our patients should be a rewarding challenge. By making a diagnosis based upon clinical presentation, doctors enable the patient to begin the process of coping. Symptomatic treatment should be offered as in any illness. When true psychiatric conditions coexist with CFS, appropriate treatment should be instituted as well.
In summary, Barsky and Borus verbalize many prejudices felt by practicing physicians. But they voice only an opinion -- an opinion that is unsupported by fact and substantially refuted by recent scientific data and clinical experience. While a free exchange of ideas is vital to the progress of medicine, publication of such unfounded opinion as a review article in a major medical journal runs the risk that “fancy” will be mistaken for “fact.” This is tantamount to attributing schizophrenia to “demons,” which seems reckless and irresponsible today, but decades ago was a prevalent opinion. Unfortunately, such unfounded opinions can lead to cutbacks in research funding, erect obstacles to published research, and increase the difficulties of patients who seek compassionate medical care. In such a case, the authors would be committing gross malfeasance, harming both the medical community and the patients to whom they are dedicated to serve.
Source: American Association for Chronic Fatigue Syndrome Newsletter. August/September, 1999.
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