Authors: Stephen Zavestoski(a),*, Phil Brown(b), Sabrina McCormick(b), Brian Mayer(b), Maryhelen D’Ottavi(b), Jaime C. Lucove(b)
(a)Department of Sociology, University of San Francisco, 2130 Fulton Street, San Francisco, CA 94117-1080, USA; (b)Department of Sociology, Brown University, Box 1916, Providence, RI 02912, USA.
*Corresponding author. Tel.: +1-415-422-5485; fax: +1-
415-422-5617. E-mail address: firstname.lastname@example.org (S. Zavestoski).
We examine Gulf War illnesses—which include the fatigue, joint pain, dermatitis, headaches, memory loss, blurred vision, diarrhea, and other symptoms reported by Gulf War veterans—in relation to other medically unexplained physical symptoms such as multiple chemical sensitivity, chronic fatigue syndrome, and fibromyalgia. Our intent is to examine the diagnosis negotiations involved in these mysterious diseases, by showing the different forms of legitimacy involved in such interactions.
Factors involved in diagnostic legitimacy are: diagnostic legitimacy in the medical community, lay acceptance of the diagnosis, uncertainty in looking for causes, and social mobilization. We conclude by noting that research may not be able to find any cause for these diseases/conditions; hence, it may be necessary to embrace medical uncertainty, and also to accept patient experience in order to facilitate diagnosis, treatment, and recovery process.
Such a change can alter patients’ expectations and taken-for-granted assumptions about medicine, and perhaps in turn reduce the frequency with which dissatisfied individuals form illness groups that mobilize to challenge what they see as an unresponsive medical system.
Following the conclusion of the Gulf War, numerous veterans from multiple nations began experiencing symptoms for which many have sought help. Diagnosis of the symptoms, much less treatment for them, has been hampered by ongoing disputes over the definition, etiology, and treatment of Gulf War illnesses (GWIs). As such, GWIs represent a growing phenomenon in which sufferers of medically unexplained symptoms struggle to get their symptoms recognized in order to receive the care they believe they need.
As part of a larger project investigating contestations over environmental illness, we interviewed medical researchers investigating possible causes of GWIs. But unlike with breast cancer and asthma, GWI researchers were not typically from environmental epidemiology backgrounds.
Instead, they largely became interested in GWIs as a result of their background in investigating conditions such as fibromyalgia (FM), chronic fatigue syndrome (CFS), and multiple chemical sensitivity (MCS). Further, unlike other diseases where there is potential environmental causation (for example, asthma and breast cancer), researchers have found virtually no evidence of environmental causation.
This discovery led us to examine GWIs as an instance of medically unexplained physical symptoms (MUPS), which includes CFS, MCS, and FM. People with these conditions suffer various combinations of fatigue, joint pain, dermatitis, headaches, memory loss, blurred vision, and diarrhea. There is considerable overlap among the various MUPS, due to symptom overlap. The term MUPS is interchangeable with other terms, such as functional somatic syndromes and chronic multisymptom illness. The fact that there are both overlapping diagnoses, and a variety of umbrella terms for these diseases/conditions, demonstrates the confusion surrounding them.
Locating GWIs in this class of illnesses shifts the focus from how illness sufferers seek to establish environmental causes, to how illness sufferers negotiate diagnosis for mysterious diseases or symptom clusters. This is interesting to study because there are an increasing number of mysterious diseases, not traceable to known pathogens or toxins, that challenge medical science and create disputes among sufferers, physicians, scientists, and government officials.
GWIs is the common label given to the host of symptoms, such as nausea, loss of concentration, blurred vision, fatigue, lack of muscle control and coordination, irritable bowels, headaches, rashes, and other ailments, experienced by veterans of allied forces during and after the Persian Gulf War of 1991. MCS is a controversial disorder characterized by recurring multisystem symptoms in response to low-level chemical exposures deemed safe for the general population.
CFS is a clinically denied syndrome that is characterized by chronic fatigue and a constellation of other symptoms and physical findings. FM is a common form of nonarticular rheumatism that is associated with chronic generalized musculoskeletal pain, fatigue, and a long list of other complaints.
Our intent is to examine these diagnosis negotiations, showing the different forms of legitimacy involved in such interactions. Our emphasis is on a collective, rather than individual, level of diagnosis negotiations. That is, we are not focusing on traditional individual level analysis of clinical interaction. Rather, we are examining how groups of people with diseases/conditions define their problem and negotiate the diagnosis with groups of physicians, scientists, and government agencies.
Further, when comparing GWIs to the other MUPS, we observe substantial variation in the extent to which those with the condition mobilize to negotiate over diagnoses. An additional intent, then, is to develop an explanation for this variation. Such an explanation will be useful as the number of MUPS increases in tandem with the modern conditions often thought to trigger them, and the intensification of their media coverage that spreads awareness of them. Probably, the most important outcome of diagnostic disputes over MUPS concerns the struggle for legitimacy of mysterious ailments, and how this influences clinical interaction.
We attempt to describe some of the issues activists confront when mobilizing against diagnoses. Our descriptions draw on our more extensive analyses of GWIs published elsewhere (Zavestoski, Brown, Linder, McCormick, & Mayer, 2002; Brown et al., 2001). In discussing CFS, FM, and MCS, we draw on analysis of the medical and social scientific research literature in those areas, patient support group materials, and material from interviews with Gulf War researchers. Though our focus is on the experiences of MUPS patients in the US, in the conclusion we discuss how these experiences may be relevant to other contexts.
Theoretically, we situate this research in the medical sociological literature on diagnosis. Diagnosis is central to the social construction of disease and illness. Diagnosis is a matter of the ‘‘politics of definitions’’ (Conrad and Schneider, 1992, p. 22), involving the time and location where medical professionals and other parties determine the existence and legitimacy of a condition. Diagnostic discovery is frequently laden with disputes, which provides a lens for viewing many of the social conflicts that revolve around issues of medicine and health. For physicians, diagnosis is integral to the theory and practice of medicine, providing descriptive information, and often causal explanations (Brown, 1995). Once a treatment is known to be effective, diagnosis provides the quickest pathway to that treatment.
As Balint (1972) discusses, physicians are confronted with what is often an ‘‘unorganized illness’’, an agglomeration of complaints and symptoms that may be unclear, unconnected, and mysterious. Their job is to understand and interpret that material in order to arrive at an ‘‘organized illness.’’ But when we apply Balint’s concept to MUPS, we find that the broad uncertainty of those conditions makes such negotiation difficult.
For sufferers, diagnosis can provide some comfort through having a name to give to the condition. The diagnosis provides legitimation that one’s complaints are taken seriously by others, inside and outside of medicine. Providing an official label for a disease or condition legitimizes individuals and groups who have had trouble achieving social awareness. Victims of violence and sexual abuse, for example, benefited from a diagnosis of their problems, even though this did not involve a new disease, but rather an awareness of existing physical trauma.
Diseases that are not ambiguous like MUPS, for example, Legionnaire’s Disease, are often mysterious until they are diagnosed. In fact, many diseases that later become readily accepted as infectious diseases are first detected through lay observation and/or are the source of much uncertainty and dispute (Roueche, 1980). Even with diseases that may be considered to have ‘‘unassailable biological foundations’’ (Aronowitz, 1991), there is a social construction of the disease in terms of discovery, treatment, and prevention.
Aronowitz studied the case of Lyme Disease, and found that social factors interacted with biological/epidemiological factors in many ways: whether investigators were American or Europeans, whether they came from rheumatology or dermatology, whether they relied on prospective studies or case reports, differences in interpretation of biological evidence based on possible differences between European and American spirochetes and ticks, differences in the ecological interactions among vectors, hosts, and demographic composition, and professional self-interest in promoting a new disease.
It is notable that the specific MUPS diagnosis can vary with the specialist who is consulted. Lyme Disease offers one example of specialist differences. It was never clear that Lyme Disease was different from erythema chronicum migrans (ECM), a disease known since 1910. Eventually, ECM was just subsumed into the definition of Lyme Disease. Dermatologists at one site focused on the rash component, pursuing the likelihood that they were seeing ECM.
Rheumatologists at another site focused on the arthritis component. Further, proponents of a new disease entity argued that, unlike ECM, Lyme Disease showed certain late, chronic features, such as arthritis. But in fact, early treatment by antibiotics might well have masked later stages. Also, researchers and clinicians might have ignored arthritis complaints as being too common overall. Patients with late-disease have nonspecific symptomatology, not always featuring arthritis. Serum tests for active infection are weak. Some Lyme Disease patients who take antibiotics shortly after infection never develop an antibody response. Even a positive test for antibodies may only indicate prior exposure, not active infection. Interlaboratory reliability is problematic as well (Aronowitz, 1991).
Lyme Disease is also of interest in showing how nonmedical factors play a role in defining a mysterious disease. Lyme Disease came to greater attention because suburban spread brought more people into close contact with wooded areas where deer were prevalent. Lyme Disease also came to attention at a time when there was increased debate on the importance of chronic disease, personal responsibility for disease, and the authority of science. Media also played a role in scaring the public, though reporters often reflected medical alarmism rather than creating their own.
These elements of attention getting led to more pressure to create a new disease, much as other diseases may become ‘‘popular’’ even without substantial epidemiological data. On top of all this, Lyme Disease was commercialized by a thriving market for diagnostic tests and antitick products (Aronowitz, 1991). Aronowitz writes that ‘‘Lyme Disease did not have to be construed as a new entity, nor (was) it unreasonable to have done so.’’ It depended on the relative power of different factors we have mentioned above. And once there has been a broadly accepted disease with official nomenclature and protocols, we still have uncertainty about who legitimately has the disease, as well as ongoing doctor–patient negotiation concerning treatment.
The above discussion of issues in the definition and diagnosis of Lyme Disease points to a number of issues that arise in MUPS diagnoses. First, specialist differences are important. Second, Lyme Disease has both symptom overlap with some ofthe MUPS, and a likelihood of considerable misclassification.
As a result, some researchers and clinicians believe it may be as loosely defined as some of the MUPS. Third, Lyme Disease demonstrates the path by which a mysterious disease gets legitimated, including the importance of media coverage. Fourth, the nonmedical context is crucial, including factors such as geographic location
and media attention.
Diagnosis also provides a gateway to health services, welfare benefits, unemployment certification, worker’s compensation claims, and pensions. When benefits are withheld by government agencies and health providers, sufferers often take organized political action to legitimate their problems. For sociologists, diagnosis offers a look at the history of medical knowledge and practice, as well as medical interaction with other social arenas and institutions. As Blaxter (1978) explains, diagnosis is ‘‘a museum of past and present concepts of the nature of disease.’’
Based on that perspective, we can view diagnosis as the ‘‘sociomedical archives’’ (Brown, 1995) in which we find the history olfaction by all social actors involved in a particular health issue. Consulting these archives allows us to see the progression of symptom and syndrome identification, and the efforts of sufferers, physicians, and researchers to produce a diagnosis. The ‘‘museum’’ quality of this discovery process is important, since there is often a long trail of observations, descriptions, chemical studies, and media portrayals that can help us understand the social discovery process. For MUPS, as for certain other diseases/conditions, the trail is full of false starts, blind alleys, overlaps, confusion, and dispute.
As Davis (2000) points out, there are no straightforward steps or explicit rules for the recognition process of any disease at the definitional, nosological level. Traditionally, syndromes are less exact than disorders, which in turn are less precise than diseases, yet there are exceptions in historical usage. Ultimately, social factors always interact with medical ones, whether or not there is a clear and commonly accepted biological basis.
When a diagnosis is unclear, there is substantial negotiation between medical viewpoints and lay perspectives. The medical viewpoint encompasses clinical descriptions and the existence of laboratory and epidemiological data, while lay perspectives are affected by perceived susceptibility and severity, by interference with interpersonal, work, and social roles, and by treatment, exemption, and compensation issues. Lay and professional worlds intersect even when diseases are not contested, but when a diagnosis is difficult to determine, the intersection is often highly charged with conflict. This may affect both worlds, resulting in changes in medical conceptions of illness and in lay understanding of science.
A pivotal factor influencing both professional and lay worlds is that of social mobilization by people with the disease. Struggles over diagnosis are often central components of social movements in health. We can view these as movements for either exclusion or inclusion of diagnoses. Some struggles seek to exclude inappropriate diagnoses, such as the prior psychiatric inclusion of homosexuality as a mental illness (Bayer, 1987) or the psychiatrized definition of pre-menstrual syndrome as Late-Luteal Phase Dysphoric disorder (later Pre-menstrual Dysphoric Disorder) (Figert, 1996).
Other efforts work to include diagnoses that have not yet been established, in order to gain legitimacy, care, and compensation. Occupational health activists have long done this in areas such as coal miner’s black lung (Smith, 1987), textile workers’ brown lung (Levenstein, DeLaurier, & Dunn, 2002), and miner’s silicosis (Rosner & Markowitz, 1991). People seeking to have the various MUPS considered as officially labeled diseases are clearly in the inclusion category. But they face different challenges than other inclusion-based movements. This often affects the outcome of disease diagnosis through motivating new science, cultivating larger social recognition fan illness, and pursuing more medical responsibility for responding to illness sufferers.
We look at these two worlds of medical and lay realities to explain how MUPS are dealt with differentially, and how social mobilization may play a role in diagnosis. We do not view these lay and medical worlds as monolithic. Indeed, there are significant disputes within both; for example, there are disputes within medicine over whether to accept a case definition for a disease, and disagreements among sufferers as to whether or not to press for an environmental or an infectious disease etiology. ‘‘If you have to prove you are ill’’: identifying and defining disease.
The intersection of two key trends—declining patient trust of the health care system, and increasing incidence of chronic, and often unexplained, illness—suggest a need for an improved understanding of when and how patients mobilize to acquire or challenge a diagnosis. In fact, the two trends are inextricably interwoven. The frequent inability of medical professionals to treat patients with chronic illnesses, even if well defined, often leads to even greater mistrust.
Likewise, a growing public awareness of environmental contamination, and the inability of physicians to explain some illnesses with environmental causes, sets up mistrust and a greater need for information. We do not mean to imply that typically there are environmental causes out there waiting to be discovered, but rather to note that it is easy for sufferers to turn toward an environmental explanation when modern medicine fails to find other causes.
In light of widespread governmental and scientific resistance to environmental explanations of many diseases where there is evidence of such etiology, it is easy to see how people with unexplained symptoms would gravitate to such an explanation. In many cases, people may seek a diagnosis, or challenge an existing one, by mobilizing the population of affected individuals.
This disease politics has become an increasingly important part of recent public perceptions of medicine. After providing a brief background on GWIs and each ofthe MUPS to which we compare GWIs, we attempt to provide an explanation for the variation in the tendency of some illness groups to challenge a diagnosis or its absence. The history of GWIs demonstrates these above issues. A US Army doctor who has treated military personnel with GWIs referred to another source (Hadler, 1996) when he explained to us in an interview that he approaches treatment of GWIs with the belief that if you have to prove you are ill, you are never going to get well.
In other words, people experiencing symptoms and feeling sick are compelled to spend their efforts in proving they indeed are sick. This means they have less opportunity to engage in a clinical interaction that will yield treatment. By extension, the stress of struggling to achieve recognition of one’s sickness can exacerbate symptoms. We argue that a fundamental motivation of patient activism is the challenge of legitimating symptoms and receiving a formal diagnosis. Gulf War veterans in the US, Canada, UK, and France have all had to deal with the perception that their symptoms are not legitimate or real. In related studies, we describe why these perceptions persisted for so long, and why veterans had such difficulty in getting treatment (Brown et al., 2001; Zavestoski et al., 2002).
Here we provide a brief description of how various institutional policies and practices of the military, the government, medical professionals, and the media shaped the nature of the obstacles veterans faced, and in turn the struggle to secure a diagnosis. Within a year of returning from service in the Gulf War, military personnel began experiencing symptoms such as nausea, loss of concentration, blurred vision, fatigue, lack of muscle control and coordination, irritable bowels, headaches, rashes, and other ailments that they had not experienced prior to service in the Gulf (Proctor et al., 1998; Wolfe, Proctor, Davis, Borgos, & Friedman, 1998). In the US, Veterans Administration (VA) physicians were unable to offer diagnoses, which typically meant sick veterans could not get care or compensation. The handful of VA physicians who offered a ‘‘Gulf War Syndrome’’ diagnosis were reprimanded and in some cases forced out of their positions.
More commonly, veterans were told that their symptoms were ill-defined (Engel et al., 1999), or stress related and not related to toxic exposure as many veterans suspected. One obstacle to receiving a diagnosis veterans faced was the fact that until 1996 the Department of Defense (DoD) denied that any soldiers were exposed to biological or chemical weapons during the war. According to a veteran quoted by New York Times reporter Philip Shenon, ‘‘because doctors were told that chemicals had not been used, many veterans were sent straight to the psychiatric department’’ (Shenon, 1997, A14).
Meanwhile, in the UK veterans received care through the National Health Service. But those still in the military were not part ofthe National Health Service, and as such found themselves fighting a legal battle to get the Ministry of Defence to recognize that their symptoms were service related and to compensate them fairly.
In the US, veterans became increasingly angered by the VA’s denial of care and the DoD’s denial of exposure. As a result, many veterans began mobilizing to get the support of their Congressional Representatives and others. Increasing media coverage and the use ofthe Internet to network with one another helped spread awareness among veterans that their illnesses were shared.
Veterans have been successful at getting funding approved for research investigating the possible causes of their illnesses (including possible exposures such as sarin gas, mustard gas, smoke from oil wells, pyridostigmine bromide, depleted uranium, pesticides, DEET insecticide in flea collars worn by soldiers to protect against insects, and anthrax vaccines). Veterans have also had success at challenging research that undermines their argument that their illnesses are related to chemical exposure.
Yet several reports and panels, including a 1994 NIH Technology Assessment Workshop and a Presidential Advisory Committee, concluded that stress was the primary explanation for veterans’ symptoms (NIH, 1994; PAC, 1996). Even though in the last 5 years more resources have been allocated to the study of other possible explanations, inadequate data, disputes over how to study Gulf War health effects, and a long list of possible chemical exposures that could be to blame, have prevented researchers from identifying the cause of GWIs, much less provide effective treatments (for methodological disputes, see Gray, Knoke, Berg, Wignall, & Barrett-Connor, 1998, Reeves, Fukuda, Nisenbaum, & Thompson, 1999; for problems with data, see NIH, 1994; IOM, 1996, 1999). Meanwhile, between 1994 and 1999, the US government funded 192 projects for a total of $154.5 million (Research Working Group, 2001).
Today, nearly 10 years of research on GWIs has resulted in an emerging consensus among medical professionals that there is no unique Gulf War syndrome. This has led one medical researcher to conclude that ‘‘irrespective of the emerging professional consensus, Gulf War syndrome is established as a popular, media and social reality anyway. Investigating how and why this concept developed is important, but the answers will not come from statistics, but social sciences’’ (Wessely, 2001a, p. 2).
Some social science approaches to these illnesses have described these diseases as post-modern illnesses (Morris, 1998), arising out of the intersection of biology and a form of late capitalist consumer culture in which popular media messages construct reality. This view ofthe cultural shaping of illness is shared by Wessely (2001a), who suggests a cultural shift has occurred in which perceived environmental hazards and threats shape popular models for illness and disease.
At the very least, it seems that technological advances bring with them increasing public concerns about technological risks. And as Wessely (2001a) reports, there is even evidence that concern with environmental conditions makes a person more likely to attribute symptoms to environmental causes (Lipscomb, Satin, & Neutra, 1992; Roht et al., 1985; Shusterman, Lipscomb, Neutra, & Satin, 1991).
Another consequence of modern technological developments is what Gray (1999) calls ‘‘postmodern medicine’’, in which laypeople lose trust in trained medical professionals and instead become medical experts themselves. This perspective is very similar to Kroll-Smith and Floyd’s (1997) account of MCS sufferers who often engage in their own ‘‘controlled’’ experiments to determine which chemicals, and in which amounts, trigger which symptoms. All of these views suggest that the landscape of medicine, doctor–patient relations, and even the experience of illness, has changed dramatically.
MUPS: a new class of disease? In this section, we describe GWIs, CFS, MCS, and FM. As our descriptions reveal, these conditions share many ofthe same symptoms. With similar case definitions, the likelihood of a patient being diagnosed with more than one of these illnesses is great (Buchwald & Garrity, 1994). Consequently, the treatment approaches are also quite similar. Wessely, Nimnuan, and Sharpe (2001) suggest that this class of illnesses, which they call functional somatic syndromes, may represent a single entity rather than multiple different illnesses. With most MUPS, sufferers are typically the first to identify their health problems. Because the symptoms are many and most often diffuse, seldom can they be definitively linked to a particular diagnosis. As a result, many MUPS sufferers engage in self-diagnosis. But in the case of GWIs, few veterans had pre-conceived ideas about what illness they had.
While many veterans initially wondered if their condition could be related to their service in the Gulf, a shared perception of the symptoms, and their possible causes, only emerged as veterans became aware of others with similar symptoms and who had similar difficulties in getting them treated. With VA physicians relying on psychological explanations, a shared illness experience also took shape around what GWIs did not represent—namely, any stress related or psychological illness.(1)
MUPS also eventually come to be discovered by medicine, science, and even government. In the US, government discovery of GWIs proceeded slowly, beginning with DoD’s denial that there were toxic exposures. Motivated by veteran dissatisfaction, federal legislators were propelled to counter DoD resistance and VA slowness to treat veterans. They began investigations of chemical exposures, and pressed federal agencies to probe deeper into existing research on potential toxic health effects. In addition to DoD, VA, and Centers for Disease Control studies, several interagency task forces
were set up to coordinate research. The Institute of Medicine was mandated to provide an analysis ofthe existing body of research, and later the RAND Corporation received a contract to do the same.
Though some VA physicians and researchers dismissed veteran complaints, others began to see patterns in the complaints and explore them further. Scientists researching GWIs came from a variety of backgrounds and motivations. Some were on the VA, DoD, or other federal staffs assigned to do such research. Others were occupational and/or environmental illness researchers who saw this as a logical extension of their work. Of this latter group, some were very sympathetic to the veterans’ complaints that they believed were not being taken seriously.
Many of the scientists and clinicians involved in studying and trying to treat GWIs came from similar fields of specialization as the scientists and researchers examining other MUPS. This was likely due to the prevalence of MUPS among veterans (Kipen, Hallman, Kang, Fiedler, & Natelson, 1999; Reid et al., 2001a).
Multiple chemical sensitivity
Of all the MUPS we discuss, MCS is the one that receives the least recognition from the medical profession. According to Kroll-Smith and Floyd (1997, p. 26), ‘‘medical professionals are likely to admit that what they do not know about MCS is considerably more than what they know (italics in original).’’(2) Those who have attempted to characterize MCS point to recurring multisystem symptoms resulting from exposure to chemicals at doses below the thresholds believed to cause effects in the general population. Yet we have no better understanding today, than when MCS was first identified in the mid-1980s, ofthe physiological dysfunctions that may explain MCS, ofthe prevalence of MCS, or of reliable treatment strategies (Ashford & Miller, 1991).(3)
Kroll-Smith and Floyd (1997) claim that while the biomedical research community is at least attempting to reach some sort of agreement on the meaning of MCS, the clinical medical profession uniformly rejects its legitimacy. From the perspective of clinicians, ‘‘MCS is a fugitive, hopefully transitory, concoction of beliefs with no rightful claim to legitimacy’’ (Kroll-Smith & Floyd, 1997, p. 29).
This is further exemplified by the absence of articles on MCS in the top two medical journals—Journal ofthe American Medical Association (JAMA) and New England Journal of Medicine (NEJM). We found that between 1996 and 2000, only four articles on MCS appeared in JAMA and NEJM. Meanwhile, seven articles on FM, 15 on CFS, and 25 on GWIs appeared during the same period. In a review of publications on MCS in medical journals, Shriver, White, and Kebede (1998) found almost exclusively hostile discussion of MCS, those affected by it, and those who treat it as a legitimate condition.
(1) This story ofthe lay discovery of GWIs begins with the assumption that veterans were experiencing symptoms that were more frequent, as well as quantitatively and qualitatively different than the normal morbidity of a population. Others have raised the possibility that there was never a rise in
unexplained symptoms, but instead a reshaping of normal morbidity as a result of cultural and media messages about the war (Wessely, 2001a).
(2) Our discussion of MCS in this section assumes that there is a real disease that exists, but has not yet been identified. Many see MCS as an entirely socially constructed illness, an argument that finds support in research that finds an absence of MCS in some countries.
(3) Shorter (1992) traces MCS’s roots to the 1920s when concerns with food allergies dominated. By the 1950s, according to Shorter, these concerns were transferred to the environment more broadly, and by the 1960s ‘‘chemical sensitivity’’ became a common diagnosis. The clinical definition employed today emerged in the 1980s.
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GWIs, and even CFS and FM as we discuss below, are less outside the boundaries of normal science than MCS. ‘‘Boundary work,’’ the use of discourse to attribute privilege to some scientists, scientific methods, or scientific claims, and not to others, as a means of rhetorically demarcating science and nonscience (Gieryn, 1999), is clearly apparent in the case of MCS. Prominent medical institutions, such as the American Academy of Allergy and Immunology, the American College of Occupational Medicine, and the American College of Physicians, ‘‘officially deny the reality of MCS as a physical disorder and caution physicians not to treat patients ‘as if’ the disease existed’’ (Kroll-Smith & Floyd, 1997, p. 28). They do so in part by discrediting clinical ecology, the one medical subfid that acknowledges MCS.
The struggle for sufferers of MCS, according to Kroll- Smith and Floyd (1997), comes from the challenge that the presumed origin of their symptoms poses to the western-trained physician who is taught to examine the body as the source of disease: ‘‘If the enactment of biomedicine occurs at the moment its body of knowledge encounters a body, the body of the environmentally ill obscures that moment and effectively prevents the encounter’’ (1997, p. 32). Yet because the medical profession has so resolutely established that MCS lies outside the boundaries of acceptable science and medical practice, MCS sufferers are denied any point of entry to begin establishing research agendas or other scientific endeavors that could potentially legitimate MCS. In response, MCS sufferers have been responsible for virtually creating a new field, known as clinical ecology.
But clinical ecology’s marginalization by organized medicine once again hinders MCS patients’ progress toward recognition of their illness. Occupational and environmental medicine, two legitimate and board-certified areas of medicine, have resolutely refused to acknowledge MCS. Consequently, MCS sufferers often find themselves before courts or insurance review boards arguing for the legitimacy of their subjective experience of illness that the medical community, and therefore the insurance industry, refuses to recognize.
Chronic fatigue syndrome
CFS is a condition mainly characterized by fatigue but also includes other somatic complaints. Clinical use of the term CFS first surfaced in the early-to-mid 1980s in the United States (Ware, 1998), although clinical descriptions date to nearly a century earlier (Wessely, 1994). By 1998, the CDC developed a case definition that has since been reworked (Holmes et al., 1988). The current definition requires: (1) the presence of self-reported persistent or relapsing fatigue for greater than or equal to 6 months; (2) the accompaniment of fatigue by four or more symptoms from a list of eight neuropsychological and somatic possibilities; (3) ruling out of other conditions known to result in fatigue through physical, laboratory and mental status examinations (Fukuda et al., 1994).
A case definition created a certain amount of medical legitimacy for CFS, and allowed researchers to more accurately identify CFS patients for their studies. Other legitimacy was gained by an NIH research program and by the Social Security Administration’s designating CFS as potentially disabling and hence acceptable for compensation. Despite the case definition, CFS patients have many ofthe same complaints as patients with FM and MCS, and the CFS case definition often cannot distinguish between them (Buchwald & Garrity, 1994).
Many physicians are still skeptical of CFS as a diagnosis (English, 1991; Henrikson, 1995; Ware, 1992), though primary care physicians seem the least skeptical (Denz-Penhey & Murdoch, 1993; Ho-Yen, 1991). This skepticism stems from the fact that CFS’s definition is actually a ‘‘negative diagnosis’’, whereby the absence of other conditions results in a diagnosis of CFS, rather than an affirmation of clinical certainty. Often, physicians downplay their patients’ symptoms or explain them with purely psychological terms, as occurs with other MUPS.
This ‘‘illness disconfirmation’’ is not useful to patients because it does not legitimate their claims, or offer a possible treatment or cure (Richman & Jason, 2001; Deale & Wessely, 2001; Sharpe, Chalder, Palmer, & Wessely, 1997). As a result, many CFS patients may drop out ofthe medical care system (Jason et al., 1997).
The majority of CFS patients who see a specialist believe that their symptoms result from a physical disease process, such as a virus, rather than from a mental illness (Banks & Prior, 2001; Euga, Chalder, Deale, & Wessely, 1996; Lane, Manu, & Matthew, 1991; Sharpe et al., 1997; Wessely & Powell, 1989). Internet support groups for CFS patients are challenging the CFS diagnosis by petitioning the government to reinstate Myalgic Encephalitis (ME) as the proper diagnosis. They believe that such a return to the ME diagnosis dropped by the CDC in 1988 would imply a viral etiology for the disease and thus place ME/CFS in mainstream medicine (an association for CFS, 2001). Since the current etiology of CFS is not well understood, the diagnosis does not suggest a physiological cause.
Since CFS is highly correlated with depression, a diagnosis of mental illness is common. A recent study into mental health impairments, however, shows that CFS patients score poorly on general health perceptions, vitality scores, and physical role restrictions, rather than on depression (Komaroff et al., 1996). CFS patients report poor satisfaction with health care. Recent findings suggest that a diagnosis that empowers the patient, and incorporates the patient’s understanding of the disease, results in more satisfaction than a diagnosis that rejects or colludes the patient’s disease experience (Salmon, Peters, & Stanley, 1999).(4) Treatment options for CFS remain limited.
Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) are the most effective treatments currently offered, yet even these do not guarantee improvement (Speckens et al., 1995; Whiting et al., 2001). However, many CFS sufferers lack health insurance benefits because they have left work due to the condition (Ware, 1998). In addition, most health insurance does not cover CBT or GET (Wessely, 2001b). Research suggests that patient empowerment techniques for the treatment of CFS, where patients are active participants in their care, are more effective than disease-oriented strategies that emphasize treatments like bed rest (Sharpe et al., 1997).
Meanwhile, sufferers of CFS continue to face skepticism from mainstream medical professionals and researchers, as well as social scientists. Showalter (1997), for example, sees CFS as one of a number of media driven contemporary hysterias that also include Gulf War syndrome, satanic ritual abuse, alien abduction, and the ultra-reactionary conspiracy theories of Oklahoma City bomber Timothy McVeigh. Her broad lumping of CFS and GWIs with such outlandish phenomena does a disservice to understanding the physical symptoms of MUPS sufferers. Morris (1998), an anthropologist, sees a biological dimension to CFS, but nevertheless refers to it as a post-modern illness with a substantial cultural component. Shorter (1992), an historian, sees CFS as one in a long line of psychosomatic illnesses. Others see a neurological, though not necessarily psychological, basis to CFS (Goldstein, 1996).
FM is a condition characterized by musculoskeletal pain. People with FM also experience sleep disturbance, headache, digestive problems, restless leg syndrome, morning stiffness, numbness in hands and feet, temperature sensitivity, depression, and cognitive disorders. FM is often medically misdiagnosed and popularly misunderstood. The American College of Rheumatology, the main medical institution dealing with FM, reports that there are 3–6 million cases of FM in the United States, or 2.5% of the population. The diagnostic criteria for FM involves chronic, widespread pain with tenderness in 11 of18 possible points, which are on both the front and back of the body, and both above and below the waist. To be diagnosed with FM, pain in the 11 areas must last for 3 months or more. Patients meeting these criteria tend to be women of childbearing age.
Over time, science has changed its understanding of what FM is. FM was first acknowledged as fibrositis, or a type of occupational illness of stone workers (Kraft, Johnson, & Laban, 1968). Other terms that have been used to describe the illness include nonarticular rheumatism and psychogenic rheumatism. Studies from the late- 1960s to mid-1970s associated these musculoskeletal symptoms with occupational illness as well as environmental exposure, cold weather, and middle age. By the 1980s, gender was recognized as an important factor (Graber, Vogt, Muller, & Bahous, 1980; Wolfe, 1986).
Masi and Yunus (1986) first recognized FM as a distinct illness, describing it as ‘‘common noninflammatory, painful musculoskeletal disorders that vary in the extent and intensity of involvement pain varies from no or few symptoms and tender points in the majority of persons to generalized FM with multiple tender points’’ (1986, p. 19). Masi and Yunus also noted that FM shares many constitutional manifestations with other common functional disorders, for example, irritable bowel syndrome and tension headache syndrome, and that these overlaps ‘‘suggest common underlying psycho neurophysiologic mechanisms in a subset of patients’’ (1986, p. 19).
When the American College of Rheumatology developed definitional criteria for FM in 1990, interest among researchers grew. Another event that led to greater interest and awareness was FM’s addition to the list of World Health Organization recognized diseases in 1992. Finally, in 1999, it was reported to be a ‘‘serious challenge to the health service industry’’ because there were enough patients not being properly cared for. Yet the research that followed has shown that there is misdiagnosis and difficulty in recognizing and understanding the disease.
Though FM is still somewhat controversial in the medical world, the current general model of FM integrates symptoms (reported by patient), epidemiology (population level knowledge ofthe illness), pathogenesis (the way the disease begins in the body), and responses to treatment. The causes of FM are unknown, and treatment tends to be unreliable. FM has been associated with various traumatic events (Amir et al., 1997), including physical trauma and sexual abuse (Walker et al., 1997). Most recently, some researchers have begun to explore sympathetic nervous system dysfunction as a possible explanation (Petzke & Clauw, 2000). Various treatment regimens are supplied to people with FMS, but each patient generally undergoes a process of experimentation with a variety of drugs, exercise regimens, and other treatment types. Regular low-scale aerobic exercise, massage and acupuncture, and low-dose antidepressants produce the most reliable results.
Despite the marginalization of FM patients, they have developed an extensive electronic network that involves many websites and chat rooms. Support groups have also been developed to provide places for people with FM to meet, but there is no evidence of any sort of social mobilization of these patients.
(4) This process would obviously be different in societies with universal health care coverage that do not require a diagnosis for a patient to get access to care or treatments.
Factors influencing diagnostic legitimacy In this section, we discuss major factors that determine the types and extent of legitimacy given to MUPS. We will point out differences between various MUPS, since these are sometimes interesting and important. But we are more concerned with showing the common features, since these will help us to understand how these and future MUPS may be dealt with. We will first examine diagnostic legitimacy in the medical community, then lay acceptance of diagnosis, next uncertainty in looking for causes, and last social mobilization.
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