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Part 2: Patient Activism and the Struggle for Diagnosis: Gulf War Illnesses and Other Medically Unexplained Physical Symptoms in the US [including CFS, FM, and MCS]

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www.ProHealth.com • October 29, 2003


Continued from http://www.immunesupport.com/library/showarticle.cfm?id=5133&T=CFIDS_FM

Diagnostic legitimacy in the medical community

There is a low level of medical legitimacy for MUPS. There is also variation in diagnostic legitimacy across specialties. In the context of medical care in the US, when a patient presents symptoms that a physician is unable to explain, the physician may take any number of different approaches. If the unexplained symptoms have no similarities with any known diagnosis, the physician may ask the patient to live with the symptoms and come back later for another visit.

The physician may also ask whether the patient has had any traumatic changes or life events that would cause stress. Or, the physician may be aware of similar constellations of symptoms that have a vague diagnosis and offer such a diagnosis to the patient. The first two approaches are likely to leave a patient dissatisfied, since the cause of the symptoms is not identified and the physician offers no or few suggestions to resolve the symptoms. In the last approach, if the diagnosis the physician offers has received some legitimacy from the medical community, there may be a level of understanding that brings with it treatment protocols. As we have mentioned earlier, however, treatments may not actually be very successful, although both patients and physicians may be comforted by having specific treatments with which to work.

Following the Gulf War, veterans seldom received any diagnosis at all. On occasion they were told the symptoms were stress related. Even those who received a diagnosis of ‘‘Gulf War Syndrome’’ received little satisfaction since such a diagnosis held little currency among medical professionals. As a result, many veterans actively challenged the VA to provide a diagnosis. This challenge was often aimed at pressuring the DOD to acknowledge the presence of biological and chemical weapons so that these could be explored as possible causes of the symptoms. MCS sufferers experience a similar ordeal in identifying pervasive chemicals to which they believe they are exposed.

Although CFS and FM are still not widely embraced by generalists, a patient is more likely to get one of these diagnoses if the symptoms match the case definition, and the doctor is familiar with the diagnosis. Whether a particular diagnosis is accorded any legitimacy by the medical community, in general, also affects patients who self diagnose before visiting a physician.

Patients who tell their doctors they believe they have MCS, for example, are not likely to get agreement from the physician. Though there is widespread acceptance among researchers of GWIs that veterans have real symptoms, there is little acceptance ofthe ‘‘Gulf War Syndrome’’ label in the US, nor the rest ofthe world. At the 2001 conference on federally funded GWI research, a special panel titled ‘‘Is There a Gulf War Syndrome?’’ emphasized this by giving numerous researchers the opportunity to make their cases against Robert Haley, one ofthe only researchers currently arguing for the Syndrome definition (Haley, Kurt, & Hom, 1997).

MCS and CFS have had similar experiences, though the development of a case definition for CFS has resulted in increasing legitimacy. FM’s legitimacy in the medical community has resulted from the growing acceptance by mainstream medicine of rheumatology, the area of specialization from which FM’s case definition comes. MCS, on the other hand, has been embraced by ‘‘clinicalecology’’, a field that has no generally recognized medical specialty board, and that receives little recognition from the mainstream medical community.

Whether a diagnosis has gained acceptance among certain specialists will also affect a patient’s acceptance ofthe diagnosis. A generalist may withhold a diagnosis, but recommend a patient see an allergist, for example, if the patient’s symptoms appear allergy related. In other cases, our interviewees reported a patient may not only self-diagnose, but also select a specialist on the basis of the self-diagnosis.

By seeking out a specialist who is likely to be sympathetic to his or her own diagnosis, the patient affects how the interaction with the specialist will shape the diagnostic outcome. In the US, for example, individuals who suspect they have FM are likely to find their way to a rheumatologist. Because most rheumatologists recognize the FM diagnosis and understand the CBT and GET approaches to treating it, their patients are likely to have a more positive experience, even if their symptoms are not resolved.

Sufferers of GWIs and MCS may try any number of specialists, but with no clinically proven effective treatments, even a supportive specialist can provide little more than psychological support. CFS patients, on the other hand, may get recognition from generalists, but have not been embraced by any of the most relevant specialists: infectious disease experts, neurologists, and psychiatrists. Diagnostic legitimacy is further compromised by what we might term the ‘‘psychiatric card.’’ There is widespread belief among medical professionals that MUPS symptoms are psychological in origin (Rest, 1995), and that these patients have personality problems or
psychiatric illness (Reid, Whooley, Crayford, & Hotopf, 2001b).

Physicians may be aware of the common knowledge that a significant fraction of patients seeking medical care have had primary mental illness diagnoses, even in the era before the current MUPS were known. In addition, the very low mortality for MUPS may make clinicians and researchers view these diseases and conditions as less worthy of attention than other more threatening diseases.

It is important to reiterate that neither medicine as a whole, nor particular specialties are monolithic in their approach to MUPS. There are contradictory possibilities for medical recognition of MUPS. By expanding their realm of problems they deal with, physicians may get more clients, yet they may also be stigmatized for championing an unscientific approach. For instance, according to Kroll-Smith and Floyd (1997), a 1991 article in Chemical and Engineering News reported that some medical boards in the US instituted policies of censuring physicians who diagnosed MCS in their patients.

Physicians may be unconvinced that there is a specific disease, yet wish to provide supportive care. For those in managed care and salaried positions, there may be incentives to reduce the amount of time spent on patients who have multiple complaints and may require many laboratory tests that may provide no additional medical knowledge.

Lay acceptance of the diagnosis

Whether patients self-diagnose or first receive their diagnosis from a doctor, they are likely to be affected by the view ofthe diagnosis in the public eye. Patients who receive a diagnosis that carries a stigma are likely to resist the diagnosis by seeking a second opinion, or refusing the treatment associated with the diagnosis.
Patients who self-diagnose, as well as those diagnosed by doctors, may seek specialized medical care specifically for the purpose of acquiring a diagnosis with greater public acceptance. Stigmatized diagnoses strain an individual’s social relations and often result in job loss and other consequences that can lead to depression or other outcomes.

In most cases, however, patients prefer any diagnosis to none at all. With GWIs, for example, veterans sought a name for their condition because it would give them not just a sense that their symptoms were being medically recognized, but also the opportunity to seek benefits and compensation if they could demonstrate to the VA that their diagnosis was service related. If patients do not perceive external forces as the cause of their conditions, they may be more likely to live without a diagnosis as long as they have access to treatments or symptom management strategies that lessen the burden of their illness.

Initially, public support for the legitimacy of GWIs, largely out of sympathy for the people who served in the war, was strong. But as science has repeatedly failed to find a cause, veterans find less and less support from the public as evidenced by declining media interest in their plight. There is likewise little overall public support for the legitimacy of the other three conditions.

In the case of most MUPS, diagnosis does not necessarily point to a specific treatment. Even the treatments typically associated with a condition, such as cognitive behavioral treatment and GET, are not centered in traditional biomedical approaches such as medication or surgery, and according to most professionals we interviewed are not very effective. But even ineffective treatments can at least give patients the perception that their symptoms are being taken seriously, since if a diagnosis does not suggest a traditional biomedical treatment, patients may perceive their symptoms as not being taken seriously. In such cases, they may seek alternate diagnoses, or lobby for additional research into their disease so that a treatment can be identified.

In the case of GWIs, the VA eventually began treatment trials even though no case definition or accepted diagnosis had been identified. Though veterans had fought for such treatments even in the absence of a diagnosis, treatment unrelated to a diagnosis has the potential to leave the patient feeling psychologized, stigmatized or ‘‘like a guinea pig’’, which in turn may lead to greater resentment or distrust of medical professionals.

Last, it is important to note that both physicians’ and patients’ sense ofthe legitimacy of a MUPS diagnosis may be affected by the pharmaceutical industry. We may expect the industry to pursue specific diagnoses for a variety of MUPS. The sole purpose, of course, would be to build more demand and to market more drugs to a growing market of people. This would likely occur without new research development, but rather with repackaging, as with the marketing of Prozac without alteration, but under a different name, Serafem, for premenstrual syndrome. Because so many physicians consider MUPS to be versions of mental illness, it is likely that a good number would be willing to write such prescriptions.

Patients who might otherwise resist an antidepressant might be receptive to a new drug that was marketed as a specific treatment for their condition. And indeed, the medication might provide relief to some people in several categories: those who have psychiatric co-morbidity, those who have a primary mental illness diagnosis that is manifested in unexplained symptoms, and people who are upset as a result of having unexplained symptoms yet do not have any diagnosed mental illness.

Uncertainty in looking for causes

MUPS sufferers face a paucity of pre-existing knowledge and policies, making it difficult to determine the cause of their disease. Even if it is unlikely that a cause will be found, these obstacles may lead sufferers to feel uncared for. There are insufficient research centers, poor databases and weak case registries, and unclear policies. For example, prior to the Gulf War, the US military had no policies regarding the collection of pre-deployment health statistics. It also lacked policies regarding the collection of data concerning the whereabouts of soldiers and the vaccinations that they had received.

Pentagon personnel were aware ofthe possibility of chemical exposures in the Gulf, as demonstrated by predeployment vaccinations and instructions given to soldiers in the event of chemical or biological weapon presence. Yet no policies existed requiring military officers or health care personnel to collect exposure information or exposure outcomes. The government’s lack of preparedness inhibited a timely and orderly response, and left scientists with inadequate data (Presidential Advisory Committee, 1996).

Another obstacle faced by veterans is the existence of policies giving the DoD special privileges to withhold information that it claims would compromise national security if divulged. This allowed DoD to withhold potentially valuable data from researchers. Clinicians and researchers are not very eager to research conditions that are so ambiguous and difficult to study, are seen as less scientific by their colleagues, and that have little financial support available for research. Looking for environmental causation may actually hinder the search for diagnosis and the resultant treatment and benefits that sufferers need. When the putative causes of those diseases are environmental factors, illness groups face an uphill battle, especially in the face of a biomedical model that looks for organic causes of disease.

Excess miscarriages at Love Canal, childhood leukemia at Woburn, thyroid disease at Hanford, and innumerable less known sites have been the source of disputes between laypeople, scientists, and government. In each case, injured people received some form of compensation, remediation, or other action, but only after protracted and often costly fights with public officials, scientific experts, and sometimes themselves (Levine, 1982; Brown & Mikkelsen, 1990).

Researching environmental factors in cancer and birth defects is hard enough. But in the case of MUPS, there are not likely to be environmental causes, and thus long effort will be misplaced and may delay adequate treatment for people. In the contested cases involving known diseases, such as cancer, people are already receiving treatment, even if there is dispute over the cause. This is often not the case for MUPS.

Social mobilization

Even in the absence of a clear etiology, MUPS sufferers must often struggle to get recognition of their symptoms and of the logical treatment and compensation outcomes that derive from recognition. When an illness has been ‘‘discovered’’ by activists and not a government agency or scientists, activists must appeal to both scientists and politicians to support them in their struggle.

Scientific experts and medical professionals, however, are reluctant to embrace lay-discovered illnesses because to do so would be to relinquish their privileged statuses as the sources of scientific and medical knowledge. Gulf War veterans, like sufferers of MCS, have struggled to get their illnesses recognized in part because they had identified and embraced a diagnostic label before science or medicine had. A disease first identified by the affected population requires illness activists to demonstrate that the condition is worthy of the time of the scientists and doctors who might study it. Where veterans were eventually successful in getting medical professionals to recognize their condition as a constellation of symptoms related to service in the Gulf War, people suffering from other MUPS have less such support.

The demographics of a population affected by a disease may hinder or help an illness group’s attempts to mobilize. Veterans of the Gulf War came from rather similar sociodemographic backgrounds before entering the military, and then were socialized into the unique institutional culture of the military. These two factors have had the effect of creating an affected population that is extremely difficult to mobilize. For example, the working-class background of many soldiers means they are not likely to have been involved in past social
movement protests or to have acquired the skills of social movement mobilization.

Further, those veterans who did have these skills, or learned them along the way, report difficulty in recruiting other veterans, much less currently enlisted military personnel. This may be in part due to the severe stigmatization of the sick role in military culture. As one officer in the Gulf War explained to us, it was common practice to go to the sick tent to appoint ‘‘malingerers’’ to hazardous duty or other undesirable jobs.

Demographics can have another effect as well. Illness groups whose members are perceived as a particularly vulnerable part of the population, or that are represented by a broad segment of the population, are also likely to receive greater public sympathy and greater attention from politicians and in turn scientists. But MUPS are not seen as diseases/conditions that most people experience themselves or in friends and relatives, nor do they expect to get these diseases/conditions. Veterans have benefited for a short time from the perception that men and women who served their country did not deserve to be sick, but have more recently lost the media attention they once had and the public sympathy that came with it (Brown et al., 2001).

Similarly, because GWIs are presumably not a threat to the average civilian, the public has less reason to be concerned about the relatively small number of veterans who are suffering from GWIs. Of the MUPS we discuss, FM is the one most likely to receive public sympathy, despite the fact that more than 80% of reported FM, CFS, and MCS cases tend to be women. At the same time, FM, CFS and MCS, tend to be more common among white, middle-class individuals—a group that is not traditionally considered to be vulnerable. Furthermore, the personal resources of these individuals allow them to pursue strategies for restoring their health without turning to the financial or political resources of a movement working on their behalf.

In this section, we have examined various factors that influence diagnostic legitimacy. We have explored diagnostic legitimacy in the medical community, lay acceptance of the diagnosis, uncertainty in looking for causes, and developing and maintaining mobilization. The multiple ambiguities of these mysterious diseases/ conditions make it hard for sufferers to receive a diagnosis and the support stemming from it. This calls into question the ability of traditional medical practices to understand patients who suffer such problems.

Conclusion

If we are in an era of post-modern illnesses shaped as much by culture as organic causes (Morris, 1998; Wessely, 2001a), then the process of diagnosis carries greater significance. These diseases also have greater salience because they bring forth a politicized form of illness experience. Even if that does not entail social movement organizations, it does entail politicized support groups that engage in struggle over the very label ofthe disease.

The added importance of diagnosis also points to a whole new approach to doctor–patient interaction captured by Gray’s (1999) notion of ‘‘postmodern medicine.’’ If laypeople are increasingly losing trust in medical experts, efficient, accurate, and effective diagnoses become more and more important. As laypeople become medical experts themselves, it also becomes imperative that medical professionals begin to understand how diagnoses, and all their attendant social and medical consequences, shape people’s illness experiences.

Ultimately, what may be needed is a model for understanding how a doctor and patient can work together to arrive at a diagnosis that is medically sound and consistent with the patient’s experience of illness and expectations for recovery. This is the medical negotiation process that medical sociological analysis has long seen as central to illness experience, clinical interaction, and medical care. Such an approach would be more consistent with the paradigm shift Sharpe and Carson (2001) call for, in which medically unexplained symptoms would be understood as nervous system dysfunctions rather than ‘‘mental’’ dysfunctions. Such a shift would result in the integration of psychiatric treatments into primary medical care, which would be seen as more acceptable to patients (Wessely et al., 1999).

Part of this transformation in doctor–patient relationships, and in medical care more generally, may require a willingness to admit to the uncertainties involved in medical practice, and to abandon the dualistic view of the mind and body (Mayou & Sharpe, 1997). The sociomedical archives of diagnosis that we spoke of earlier are full of misguided approaches that failed to gauge the complexity of disease and illness, and that declined to understand the nonmedical components of disease and illness.

It may be time for medical experts to embrace medical uncertainty as precisely the reason why patient expertise and illness experience are essential to the diagnosis, treatment, and recovery process. Of course, given evidence that uncertainty can actually exacerbate conditions (Wessely et al., 1999), further research is needed to determine what embracing uncertainty might mean for diagnosis, treatment and recovery, and whether it is better than the current practice of withholding diagnoses when uncertainty exists.

Or, will embracing uncertainty 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. Conversely, is avoiding patient mobilization a desirable goal, or does mobilization function to question and challenge diagnostic practices in ways that otherwise would not occur? Furthermore, how will the answers to these questions vary across cultural and political boundaries?

Social scientists can contribute in several ways to answering these questions. They can apply the long legacy of medical social scientific work on uncertainty, modifying it to address MUPS. They can also show the centrality of social mobilization around these mysterious diseases, whether it takes place in a generalized social mobilization or a more focused health social movement. And they can develop models of the process of disease recognition that take into account the likelihood that full recognition will not always occur.

Much as researchers had to come to grips with the transition from the primacy of infectious diseases to chronic diseases, they may now face a new transition toward a growing preponderance of (though not a replacement by) the mysterious MUPS. At the same time, they will need to be prepared for the possible step backward, as we have seen in modern medicine where AIDS and the resurgence of other infectious diseases has put a dent in our previously accepted notion of epidemiological transition.

Acknowledgements

This is a revised version of a paper presented at the 2001 Annual Meeting of the American Public Health Association. This research is supported by grants to the second author from the Robert Wood Johnson Foundation’s Investigator Awards in Health Policy Research Program (Grant #036273) and the National Science Foundation Program in Social Dimensions of Engineering Science, and Technology (Grant #SES-9975518). We thank Rebecca Gasior, Meadow Linder, Theo Luebke, Joshua Mandelbaum, and Rachel Morello- Frosch for their participation in the larger project from which this work arises. We are grateful to the scientists ofthe Boston Environmental Hazards Center for permitting us access to their work. We thank Charles Engel, Lindsay Prior, and Simon Wessely for helpful readings of the manuscript.

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