The Fibromyalgia Story: Medical Authority and Women's Worlds of Pain
http://www.100md.com
《新英格兰医药杂志》
Fibromyalgia and Other Central Pain Syndromes
Edited by Daniel J. Wallace and Daniel J. Clauw. 421 pp., illustrated. Philadelphia, Lippincott Williams & Wilkins, 2005. $89.95. ISBN 0-7817-5261-2.
These are important books. They offer little to salve the patient bearing the "fibromyalgia" label. They offer little to enhance the effectiveness of the clinician who did the labeling. But they offer much for scholars of many disciplines who seek to understand the experience of pain, and to cast mind–body duality in a modern light. These books are well-written expositions on the preconceptions of highly disparate academic traditions.
"Fibromyalgia" is the neologism adopted in 1990 by the members of a committee who were convinced that no other rubric did justice to the plight of their patients who were suffering persistent widespread pain in the absence of objective pathobiology, but who were characterized for their singular antipathy to being poked in particular sites — "tender points" — on their bodies. This committee bore the imprimatur of the American College of Rheumatology (ACR), enjoyed the underwriting of the pharmaceutical firm Merck Sharp & Dohme, and formulated the vaunted ACR Criteria for the Classification of Fibromyalgia. The criteria emerged by discerning the features that distinguished patients who the members of the committee had labeled as having fibromyalgia from those they had not so labeled. In other words, the members were testing their diagnostic hypothesis on the very patients they used to generate their notion of fibromyalgia — a classic pitfall in logic. In fact, highly tender points are found in many persons in distress, whether from congestive heart failure or poverty. Nonetheless, the formulation and promulgation of these criteria vested the ACR definition of fibromyalgia and its advocates with authority and with admission to the mainstream of Western medicine. Kristin Barker calls these prime movers "diagnostic entrepreneurs."
Barker is a sociologist. Her intellectual tradition considers ideas to be socially constructed. Illness and disease are more than physical realities; they are conceptualizations shaped by social experience, cultural traditions, and current knowledge paradigms. Barker is drawn to apply her perspective to the observation that, albeit a tautology, the ACR criteria ushered in a decade in which escalating numbers of patients, mainly women, were to be labeled as having fibromyalgia. The labeling shaped their experience of self and of sickness, transforming their suffering into symptoms of disease. This medicalization wields the authority of biomedicine to certify that the suffering is real, not something they could wish away. No longer must these patients suffer the erosion of self and what Barker refers to as "life world" in the absence of cultural legitimacy. Medical sociology (and its sister discipline, medical anthropology) has been enriched by the enduring insights of cultural empiricists whose legacy includes notions of the sick role, illness experience, illness behavior, and "second-wave" feminist thinking. Barker interviewed 31 people with fibromyalgia, and found support for her preconceived notions couched in this legacy. Such an exercise also flirts with tautology. Fortunately for Barker, and for us, there is synergy between her monograph and the textbook edited by Wallace and Clauw.
Theirs is a stereotypical multiauthored medical textbook with chapters on history, clinical definitions and spectrum of disease, epidemiology, pathophysiology, and treatment. Were this a text on myocardial ischemia, rheumatoid arthritis, or multiple sclerosis, the central themes would be vascular occlusion, cartilage erosion, and demyelinating plaques, respectively. The theme of Fibromyalgia and Other Central Pain Syndromes is more abstract. It is an illness experienced by a woeful patient, usually a woman, who can dispassionately detail her suffering with manifold somatic idioms in a narrative tainted by limited trust. Several of the authors are among Barker's "diagnostic entrepreneurs." Nearly all the authors express their fervent belief that fibromyalgia is the manifestation of abnormal pathobiology. For 15 years, these authors and many others have been generating, massaging, and torturing data in a vain quest to find any compelling, reproducible pathobiology that might correlate with the illness defined by the ACR criteria. Chapter after chapter bears witness. Undaunted, the authors take refuge in the shortcomings of the criteria. No longer do they struggle to extricate fibromyalgia from myriad overlapping symptoms; rather, they coalesce them into a painfulness that need have no pathobiology outside the central nervous system, a condition of central pain, or central sensitization, or even — as discussed in one chapter — a group of central sensitivity syndromes. It wouldn't surprise me if Fibromyalgia were expunged from the title of a subsequent edition, leaving only Central Pain Syndromes.
In pioneering experiments conducted more than 20 years ago, Clifford Woolf demonstrated that a particular state of central neural excitation could enhance sensitivity to noxious stimuli. These observations, in experimental animals, certainly have relevance to some pain states in man, such as postherpetic pain or the pain of diabetic peripheral neuropathy. However, fibromyalgia is not an opiate-responsive, tissue-specific pain state. It is a far more global state of painfulness, where suffering is much more than an overtone. No one "has" fibromyalgia, or "suffers from" fibromyalgia; one "is" fibromyalgia. What does "central sensitization" mean in such a state? No doubt patients with fibromyalgia have a distinctive neurophysiology that supports an altered somatic sensibility and reactivity. No doubt the elite musician, the elite athlete, and the world-class diagnostician each have a distinctive neurophysiology. Some of what makes these people distinctive is reflected in the pigments of the imagination displayed by functional magnetic resonance images and other dynamic imaging techniques; most features remain elusive. The elite musicians, athletes, and physicians are far more likely to be comfortable in their skin, and far more likely to be considered "normal" than the person who is said to have fibromyalgia.
It is time to extricate those burdened with the fibromyalgia label from what Barker terms their "epistemological purgatory." They are afflicted with the distinctive neurophysiology of a pathogenetic idea. Such ideas need to be recognized and explained, so that research and treatment focus on neural plasticity as it pertains to complex intellectual constructs. There is no disease to cure.
Nortin M. Hadler, M.D.
University of North Carolina
Chapel Hill, NC 27599
nmh@med.unc.edu(By Kristin K. Barker. 252)
Edited by Daniel J. Wallace and Daniel J. Clauw. 421 pp., illustrated. Philadelphia, Lippincott Williams & Wilkins, 2005. $89.95. ISBN 0-7817-5261-2.
These are important books. They offer little to salve the patient bearing the "fibromyalgia" label. They offer little to enhance the effectiveness of the clinician who did the labeling. But they offer much for scholars of many disciplines who seek to understand the experience of pain, and to cast mind–body duality in a modern light. These books are well-written expositions on the preconceptions of highly disparate academic traditions.
"Fibromyalgia" is the neologism adopted in 1990 by the members of a committee who were convinced that no other rubric did justice to the plight of their patients who were suffering persistent widespread pain in the absence of objective pathobiology, but who were characterized for their singular antipathy to being poked in particular sites — "tender points" — on their bodies. This committee bore the imprimatur of the American College of Rheumatology (ACR), enjoyed the underwriting of the pharmaceutical firm Merck Sharp & Dohme, and formulated the vaunted ACR Criteria for the Classification of Fibromyalgia. The criteria emerged by discerning the features that distinguished patients who the members of the committee had labeled as having fibromyalgia from those they had not so labeled. In other words, the members were testing their diagnostic hypothesis on the very patients they used to generate their notion of fibromyalgia — a classic pitfall in logic. In fact, highly tender points are found in many persons in distress, whether from congestive heart failure or poverty. Nonetheless, the formulation and promulgation of these criteria vested the ACR definition of fibromyalgia and its advocates with authority and with admission to the mainstream of Western medicine. Kristin Barker calls these prime movers "diagnostic entrepreneurs."
Barker is a sociologist. Her intellectual tradition considers ideas to be socially constructed. Illness and disease are more than physical realities; they are conceptualizations shaped by social experience, cultural traditions, and current knowledge paradigms. Barker is drawn to apply her perspective to the observation that, albeit a tautology, the ACR criteria ushered in a decade in which escalating numbers of patients, mainly women, were to be labeled as having fibromyalgia. The labeling shaped their experience of self and of sickness, transforming their suffering into symptoms of disease. This medicalization wields the authority of biomedicine to certify that the suffering is real, not something they could wish away. No longer must these patients suffer the erosion of self and what Barker refers to as "life world" in the absence of cultural legitimacy. Medical sociology (and its sister discipline, medical anthropology) has been enriched by the enduring insights of cultural empiricists whose legacy includes notions of the sick role, illness experience, illness behavior, and "second-wave" feminist thinking. Barker interviewed 31 people with fibromyalgia, and found support for her preconceived notions couched in this legacy. Such an exercise also flirts with tautology. Fortunately for Barker, and for us, there is synergy between her monograph and the textbook edited by Wallace and Clauw.
Theirs is a stereotypical multiauthored medical textbook with chapters on history, clinical definitions and spectrum of disease, epidemiology, pathophysiology, and treatment. Were this a text on myocardial ischemia, rheumatoid arthritis, or multiple sclerosis, the central themes would be vascular occlusion, cartilage erosion, and demyelinating plaques, respectively. The theme of Fibromyalgia and Other Central Pain Syndromes is more abstract. It is an illness experienced by a woeful patient, usually a woman, who can dispassionately detail her suffering with manifold somatic idioms in a narrative tainted by limited trust. Several of the authors are among Barker's "diagnostic entrepreneurs." Nearly all the authors express their fervent belief that fibromyalgia is the manifestation of abnormal pathobiology. For 15 years, these authors and many others have been generating, massaging, and torturing data in a vain quest to find any compelling, reproducible pathobiology that might correlate with the illness defined by the ACR criteria. Chapter after chapter bears witness. Undaunted, the authors take refuge in the shortcomings of the criteria. No longer do they struggle to extricate fibromyalgia from myriad overlapping symptoms; rather, they coalesce them into a painfulness that need have no pathobiology outside the central nervous system, a condition of central pain, or central sensitization, or even — as discussed in one chapter — a group of central sensitivity syndromes. It wouldn't surprise me if Fibromyalgia were expunged from the title of a subsequent edition, leaving only Central Pain Syndromes.
In pioneering experiments conducted more than 20 years ago, Clifford Woolf demonstrated that a particular state of central neural excitation could enhance sensitivity to noxious stimuli. These observations, in experimental animals, certainly have relevance to some pain states in man, such as postherpetic pain or the pain of diabetic peripheral neuropathy. However, fibromyalgia is not an opiate-responsive, tissue-specific pain state. It is a far more global state of painfulness, where suffering is much more than an overtone. No one "has" fibromyalgia, or "suffers from" fibromyalgia; one "is" fibromyalgia. What does "central sensitization" mean in such a state? No doubt patients with fibromyalgia have a distinctive neurophysiology that supports an altered somatic sensibility and reactivity. No doubt the elite musician, the elite athlete, and the world-class diagnostician each have a distinctive neurophysiology. Some of what makes these people distinctive is reflected in the pigments of the imagination displayed by functional magnetic resonance images and other dynamic imaging techniques; most features remain elusive. The elite musicians, athletes, and physicians are far more likely to be comfortable in their skin, and far more likely to be considered "normal" than the person who is said to have fibromyalgia.
It is time to extricate those burdened with the fibromyalgia label from what Barker terms their "epistemological purgatory." They are afflicted with the distinctive neurophysiology of a pathogenetic idea. Such ideas need to be recognized and explained, so that research and treatment focus on neural plasticity as it pertains to complex intellectual constructs. There is no disease to cure.
Nortin M. Hadler, M.D.
University of North Carolina
Chapel Hill, NC 27599
nmh@med.unc.edu(By Kristin K. Barker. 252)