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Professor Bradley is the William Ziegler Professor of Business Administration Emeritus at the Harvard Business School. In addition to teaching Management and Strategy in the Owner President Management Program and leading an Immersion Experience Program (IXP) in Turkey this year, he is the faculty chair of two executive programs, Strategy: Building and Sustaining Competitive Advantage and Designing and Executing Strategy.  In the past, he has served as the Senior Associate Dean for Faculty Development, Chairman of the Program for Management Development, Chairman of the Competition and Strategy Area, Chairman of the Managerial Economics Area, Course Head for Managerial Economics, and Associate Director of Research. In the MBA program, he created a course, Competing in the Information Age, which focused on the impact of the Internet on business strategy.

Professor Bradley's research interests center on the impact of technology on industry structure and competitive strategy. His most recent book, The Broadband Explosion: Leading Thinkers on the Promise of a Truly Interactive World, published by Harvard Business School Press (2005), argues that cheap and abundant bandwidth has the potential for creating new capabilities, markets, and strategies that will forever alter the business landscape. An earlier book, Sense and Respond: Capturing the Value in the Network Era, Harvard Business School Press (1998), dealt with the shift from “make and sell” strategies to “sense and respond” strategies driven by the explosion of information technology and the use of the Internet.  Related books, Globalization, Technology, and Competition, Harvard Business School Press (1993), dealt with the fusion of computers and telecommunications in the 1990s, and Future Competition in Telecommunications, Harvard Business School Press (1989) delt with the emerging competitive landscape for telecommunications.  He has written three other books: Quantitative Methods in Management, Richard D. Irwin, Inc., Applied Mathematical Programming, Addison-Wesley, Inc., and Management of Bank Portfolios, John Wiley and Sons as well as numerous case studies and articles for academic journals.

In his outside activities, Professor Bradley has worked on a variety of strategy initiatives in both the private and public sectors.  He serves as a member of the board of directors of CIENA Corporation, Transatlantic Reinsurance Company, the Risk Management Foundation, Inc. and Zuma360 Software, Inc. as well as on several advisory boards of nonpublic companies.  In the past, he was a member of the board of directors of i2 Technologies, Inc., Roadmaster Industries, Inc., and XcelleNet, Inc. and also a member of the editorial board of the Harvard Business Review.

Professor Bradley received his BE in Electrical Engineering from Yale University where he was elected to TAU BETA PI, and his MS and PhD in Operations Research from the University of California, Berkeley. Prior to coming to Harvard, he was with the Center for Exploratory Studies of the IBM Corporation.

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Debating the legitimacy of a contested environmental illness: a case study of multiple chemical sensitivities (MCS)

Authors

  • Tarryn Phillips

    1. School of Social and Cultural Studies, University of Western Australia, Western Australia
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Address for correspondence: Tarryn Phillips, Anthropology and Sociology Group, School of Social and Cultural Studies, University of Western Australia, 35 Stirling Highway, Crawley, Western Australia 6009, Australia
e-mail:tarryn@cyllene.uwa.edu.au

Abstract

More than 20 years after it was first identified, the anomalous condition, multiple chemical sensitivities (MCS), remains immersed in controversy, with a continuing debate over its causation being played out in the medico-scientific community and in the courts. This article examines why sceptical and supportive experts disagree over the condition’s legitimacy as an organic condition. Drawing on ethnographic research conducted in Perth, Western Australia, the author scrutinises the decision-making practices of 16 experts (eight sceptical and eight supportive of a chemical explanation). Both groups were found to use evidence-based, inductive reasoning. However, sceptical experts tended to use a different set of evidence requirements, exhibited more faith in the efficiency of the current biomedical paradigm regarding toxicity and were less likely to acknowledge uncertainty in their field. All the experts recognised a spectrum of beliefs about the causal mechanisms of MCS. However, when they were engaged in litigation as expert witnesses due to their supportive or sceptical tendency, the oppositional legal system polarised their opinions and exacerbated the perceived divide between them. Ultimately, the adversarial medico-legal process inhibits genuine dialogue between some of the key players in the MCS debate, thus impeding understanding and consensus about the condition.

I’ve interviewed many, many [chemically sensitive people] and I’ve seen how adversely chemicals [. . .] have affected a person’s overall functioning [. . .] I’ve seen them first-hand. I’ve visited them in their homes, and know how much they suffer. So that’s why I’m prepared to take a stand. (Clinical psychologist)

I think these [people with MCS] get a whiff of compensation rather than a whiff of chemicals [. . .] They have an illness of some sort which cannot be diagnosed. They look around, they say, ‘What is the cause of this? My God, what’s that smell? That must be the cause’. And then they switch on Foxtel, what do you know? Erin Brockovich is on TV. (Infectious disease specialist)

Multiple chemical sensitivities as a contested illness

In 1987 an American occupational physician, Mark Cullen, identified an emergent condition, which he labelled multiple chemical sensitivity (MCS). Patients exposed to low levels of chemicals in the workplace had started to develop an extraordinary sensitivity to everyday chemicals with which the rest of the population experiences little problem, such as those emanating from perfumes, deodorants, painted walls and recently laid carpet (Cullen 1987). The workers subsequently exhibited symptoms such as chronic fatigue, fainting, headaches and memory loss. Now, more than 20 years after Cullen first identified MCS, a controversy continues to play out in the medico-scientific community and in the courts over what causes the condition. The debate, as illustrated in the opening epigraphs to this article, is over whether the illness is an organic injury caused by toxins in the body (see Ashford and Miller 1998, Colborne et al. 1996, Donohoe 2005, Winder 2002) or whether it is a psychosomatic condition related to psychosocial paranoia about chemicals (see Black 2000, Lacour et al. 2005, Simon et al. 1990, Staudenmayer 1999).

To people with MCS, the manifestations of their illness can be very debilitating and impede them from maintaining employment and living normal lives (Kroll-Smith and Floyd 1997, Lipson 2004). Like those with similar chronic illnesses, such as chronic fatigue syndrome (CFS), people with MCS desire the recognition and validation associated with the ‘sick role’ (Cooper 1999, Dumit 2006, Glenton 2003). Entailing a form of contract, the sick role entitles those people who are deemed by the authorities to be legitimately ill to secondary benefits, including workers’ compensation and exemption from full-time employment (Parsons 1951). This form of legitimacy also allows chemically sensitive individuals to be absolved of blame and therefore eligible for sympathy from friends and family (Lipson 2004). Although the sceptical experts often contend that an illness with a psychosomatic cause is no less legitimate than one with a chemical cause (see for example, Staudenmayer 1999), nevertheless this approach robs chemically sensitive individuals of the claim that chemicals are making them ill. It also undermines their integrity, detracts from their claims to compensation and, like the stigma related to mental illness (Brown and Inhorn 1990), discursively portrays them as being more responsible for their condition. As a consequence, when sceptical experts offer a psychosomatic explanation, the connotation for chemically sensitive individuals is that they are being manipulative. As one chemically sensitive participant in the study reported, ‘they think I’m just a shifty bugger trying to milk the system’. The quest for legitimacy of MCS, therefore, specifically denotes the struggle to have the condition recognised as a disease, which is contingent on a medical consensus that it is a genuine disability.

For the medical profession, MCS presents a ‘source of professional confusion’ (Kroll-Smith and Floyd 1997: 17) because its symptoms are objectively hidden (Lipson 2004). According to the biomedical view there is also little evidence of toxins in the body as determined by pathological test results and the causation is difficult to measure (Gordon 1998, Wing 2000). Together with a number of controversial conditions such as Gulf War illnesses and CFS, MCS is conceptualised as a grouping of medically unexplained physical symptoms (MUPS) (Engel et al. 2002). They are emergent in the sense that, despite volumes of research, ‘no aspect of them is settled medically, legally, or popularly’ (Dumit 2006: 578). Further, the physiological or psychological origin of these conditions has remained contested and thus they defy paradigmatic biomedical assumptions of a disease’s susceptibility to observation and measurement. In the case of MCS the discrepancy between the physician’s biomedical understanding on the one hand and the patients’ toxicological explanation of their symptoms on the other often ‘yields discordant patient–provider conclusions’ and leads to a ‘therapeutically counterproductive’ medical encounter (Engel et al. 2002). The uncertainty surrounding MCS means that representative professional associations (for example, the American College of Occupational and Environmental Medicine) offer few definitive answers and minimal guidance regarding the diagnosis or treatment of MCS (see the position statement of the American College of Occupational and Environmental Medicine [Medfusion 1999] which, since 1999, has remained noncommittal on MCS). Although this article gives equal attention to the perspectives of supportive and sceptical experts, this research concurred with previous findings (Dumit 2006, Kroll-Smith and Floyd 1997) that most of the clinical medical profession view the condition as predominantly psychosomatic.1

As a consequence of their lack of recognition within, and alienation from, the biomedical community, many people with MCS align with the burgeoning environmental health movement (Brown 2007, Dumit 2006, Klawiter 2005, Zavestoski et al. 2004). As part of the rise in health social movements more generally, this mobilised community of sufferers, lay activists, academics and supportive scientific professionals are seeking improved services and care for the environmentally ill. Additionally they are also challenging the ‘dominant epidemiological paradigm’ of assessing environmental risk (Brown 2007) and providing an ‘epistemic challenge’ to the biomedical research community (Hess 2005). In conjunction with this movement, people with MCS are, for example, forming their own, original understandings of the body’s relationship to the environment, because hegemonic medical science does not make space for their condition (Kroll-Smith and Floyd 1997). They are not merely resorting to traditional folk knowledge or alternative medical ideas to understand their condition, but are rather co-opting the biomedical language of mainstream science in novel ways (Kroll-Smith and Floyd 1997: 34). Joseph Dumit (2006) suggests those with unexplained conditions further mobilise ‘facts’ on Internet chat-rooms in an effort to disseminate knowledge that may challenge institutional resistance to their claims and assist fellow sufferers in their medical, legal and bureaucratic interactions. In this global quest for MCS recognition, people who suffer from the condition have been fighting for social adaptation to their needs so that, for example, public places are made free of chemicals and fragrance (Kroll-Smith and Floyd 1997). In this sense they have aligned with the political battle of disability activists and have to some extent bypassed the standard of proof of causation required to legitimise their condition in the medical realm.

Background to the study

In Western Australia, where activism for disability status for MCS has gained little momentum, the struggle over the condition’s legitimacy has largely played out on a medico-legal stage when workers have sought compensation for the condition from their employers. The process for resolving MCS claims may differ in other countries where MCS has received recognition as an organic condition, such as Austria or where landmark decisions have been made, as in some jurisdictions in the USA (Kroll-Smith and Floyd 1997). However, in each of the case studies, experts who were sceptical of MCS were engaged by the defence in the lead-up to trial (hence termed sceptical experts), just as the plaintiff’s team engaged experts who were sympathetic to a chemical explanation. In addition to their role as expert witnesses in these cases, many of the specialists wrote editorials in, or were quoted in, local newspapers denouncing or supporting MCS; published research that supported the sympathetic or sceptical arguments; and were involved in either approving or fighting to prevent expansions of the industries allegedly responsible for causing the condition. A number of the experts involved in my case studies figured prominently in the media coverage of the two most highly publicised occupational MCS disputes. They undoubtedly informed local understanding that the condition is controversial while also contributing to the global medico-scientific contestation over MCS. The difference of opinion between these experts is therefore influential on the controversy surrounding MCS, which is shrouding the treatment of chemically sensitive people in further doubt and uncertainty. It is thus necessary to determine what informs and polarises these professionals’ opinions on MCS.

This article is drawn from a larger ethnographic project that investigates the medico-legal process surrounding MCS lawsuits in Perth. To receive a compensation payout in Western Australia, workers who have supporting medical evidence of disability do not have to prove the employer is liable if the latter agrees that such workers suffer from a work-caused condition. If, however, the employer disagrees and has contradictory medical evidence – which occurred in all of my case studies – the dispute enters medico-legal proceedings, which start with the conciliatory process of mediation and review before progressing to a legal hearing presided over by a judicial officer if resolution has not been achieved.

The focus of this article is an interrogation of the principal differences between supportive and sceptical experts. Three marked differences are identified in the supportive and sceptical decision-making process: the two groups of experts diverge in their internalised evidence requirements; they approach uncertainty in very different ways; and their faith in the medical paradigm is also polarised. However, the ethnographic process of data collection revealed that there are areas of consensus between the two groups which are obscured in the adversarial nature of the medico-legal encounter.

Methods

In the eight occupational disputes used as case studies in this article, textual analysis was made of all relevant documents to which the author was given access, including medical, legal, parliamentary and media documents. For the claim that was ongoing at the time of study, participant observation was conducted at relevant events over the three years in which the proceedings unfolded. This included attending formal legal hearings, participating in informal meetings between the plaintiff and legal team during the proceedings and engaging in social gatherings with experts and litigants outside the courtroom context. Further, 36 semi-structured interviews were conducted with a range of participants. These included chemical injury litigants, their friends, family and members of the community who acted as advocates or gave evidence during the litigation; medical and public health expert witnesses; legal practitioners; political representatives; and an investigative journalist.

Of the eight cases studied, three workers were paid out-of-court settlements, two abandoned their lawsuits, one escaped to his farm after receiving compensation, one was in dispute at the time of writing up the research, and another worker took his case all the way to the Supreme Court of Western Australia before losing in his attempt to prove disability. All their cases lasted for years and none felt they had achieved adequate treatment within the medico-legal system.

Sixteen medical experts (eight sceptical and eight supportive) figured prominently in the case studies and it is their reasoning – recorded at legal proceedings, in medico-legal reports, court transcripts, parliamentary inquiry records, authored publications and interview transcripts – that informs the argument that follows. The number of practitioners who are renowned for their expertise in MCS cases in Australia is small; thus it is notable that most of these experts frequently act in such lawsuits and are known nationally (and some of them internationally) as significant actors in the debate over the condition’s legitimacy. The expert informants came from a number of disciplines, including toxicology, psychiatry, general practice, neuropsychology and occupational therapy. All, despite the variation in disciplinary approach, are considered to be part of the medico-scientific community. At the time the study was conducted they were all in the practice of diagnosing MCS patients or assessing its risk.

Interviews were conducted with eight of the 16 medico-scientific professionals. A limitation of the research was that while six supportive practitioners were enthusiastic interviewees, all except two sceptical practitioners declined to be interviewed. This lopsided sample may be explained by two features of the research: the overly acrimonious context of occupational lawsuits means much animosity is directed at sceptical experts, who may be unwilling to provoke further acrimony. Furthermore, sceptical experts may wish to provide no further engagement with a condition they conceptualise as illegitimate. Beside two insightful interviews with a sceptical toxicologist and an infectious disease specialist, the sceptical experts are thus underrepresented in the interview data, though they are equally represented in participant observation at legal events and textual analysis.

Ways of doing science: sceptical and supportive experts

In the legal cases analysed for this article, the expert sample included both a sceptical and supportive representative from the fields of psychology, occupational medicine, psychiatry and toxicology. The differences in their reasoning therefore did not rest on the specialist axis. The experts did, however, exhibit personal propensities towards different ways of doing science. Addressing these disparities, Janice Reid and Lyn Reynolds (1990) assert that the medical science language that sceptical and supportive experts engage to explain their viewpoints on an emergent, occupational condition constitutes ‘desocialised facts’. Supportive experts apply ‘objective’ scientific discourse essentially as a disguise for their compassion for the workers in question and, equally, the sceptical experts use the language of hard science to simply veil their moral outrage at the possibility of non-deserving workers receiving compensation.

As illustrated in the opening epigraphs to this article, compassion and outrage are expressed by supportive and sceptical experts, respectively, over MCS. Reid and Reynolds emphasise that personal value systems (which delineate who should be compensated and, furthermore, who should be accountable for providing compensation) underlie the way in which medical clinicians practise their science with regard to emergent conditions. While some may have a tendency to privilege the rights of injured individuals, others may privilege a sense of social responsibility to the parties who bear the cost of compensating the injury, be it the state or an employer. Indeed, they each enact a different facet of the medical practitioner’s role. The supportive experts engage with a more traditional ideal of the physician as healer, whereas the sceptics articulate their responsibility as more pragmatic gatekeepers to compensation. The gatekeeper role relates to politico-economic pressures on physicians to ensure that medical assistance and resources are fairly distributed in a cost-effective manner (Bishop and Rees 2007, Neimeyer 1991). These roles are not fixed, however, as practitioners must alternate between the identity of healer and gatekeeper. Why, then, do sceptical and supportive experts disagree about who is genuinely ill and who deserves compassion in the first place? One distinction between the two groups relates to three key differences in their approach to science: their faith in the medical paradigm; their reactions to uncertainty; and internal requirements of evidence.

Faith in the medical paradigm and reactions to uncertainty

In describing his professional experience with MCS, a sceptical toxicologist explained:

MCS is a condition that presents itself solely with symptoms . . . there is never anything wrong that you can measure. So you can never find anything wrong on physical examination, you can never find anything wrong on laboratory examination, and even methodologies of neural imaging which are so sensitive that they can see you think still don’t see anything going wrong . . . In some circumstances it’s justifiable to measure specific toxins [. . .] But only where there has been a half-way plausible exposure history. If [not] then those tests are never abnormal, so that they’re not pursued. At the end of that kind of assessment – which is a pretty laborious process – most cases which present with MCS you can give them the reassurance that they’re not poisoned – they’ve got MCS, but it’s not to do with any poisoning syndrome

This expert’s comments are illustrative of the inductive reasoning with which medical students are taught to solve problems. Inductive reasoning in the clinic involves practitioners making inferences from the evidence at hand, which, combined with medical knowledge and previous experience, lead them to make a rational diagnosis (Gandjour and Lauterbach 2003). This is mainly carried out through differential diagnosis, whereby physicians examine the raw material, the signs and symptoms of the patient, and use their education and clinical experience to work out everything that could possibly be affecting the patient, and then isolate what is probably causing the illness (Beck et al. 2003).

However, when something is only probable, uncertainty is inevitable. Renee C. Fox (1959, 1978, 2000) suggests that learning to deal with uncertainty is an inherent part of the way medical students are ‘intellectualised’. Medical students develop collective defence mechanisms to suppress the possible perils of the uncertainties they deal with. Jay Katz (1984: 165–206) further theorised that practitioners tend to ‘avoid uncertainty’. The medical profession fosters belief in the superior effectiveness’ (1984: 165) of the treatments developed in their field, so medical practitioners are able to work within the confines of their professional paradigm, have faith in its efficiency and thus evade the notion of uncertainty.

The sceptical toxicologist quoted above has a strong ‘belief in the superior effectiveness’ (Katz 1984) of the techniques for measurement of toxicity, such as neural imaging, used in his field. Another example involves a consultant occupational physician who gave evidence to a parliamentary inquiry regarding MCS. He asserted:

I was left with no choice but to conclude that, with the measured quantities in both workplace and the environment, there was no potential for long-term health effects . . . The scientific data left me with no alternative but to come to the conclusion that there was no evidence for an association [between ill-health and emissions].

This expert similarly adheres to and has faith in a particular style of rational thought permitted within the risk assessment paradigm, which in turn leaves him with only one correct and ‘rational’ decision regarding the emissions: that they do not cause ill-health. According to these specialists, MCS does not fit into the normal toxicological paradigm because the measuring tools, in which they have faith, do not register evidence of organic illness in MCS patients. On the basis of this lack of evidence, all the sceptical experts in the case studies examined in this research concluded that MCS cannot be physiologically based.

The sceptics consequently offered alternative causative mechanisms for the condition. One suggested that for evolutionary reasons humans have developed a bodily response to bad odours and that chemically sensitive people have an extraordinarily intense reaction to them. A number of the sceptics offered the theory that MCS was a belief system, similar to a cult, perpetuated by supportive doctors, exacerbated in the media, and reflected in popular culture, such as in Erin Brockovich (2000), a Hollywood film about a single mother crusading for chemically injured plaintiffs. According to the sceptics, these elements erroneously create paranoia about chemicals that in turn cause chemically sensitive individuals to psycho-generate their symptoms. The media coverage about clusters of MCS, as well as advocacy and support groups, are similarly deemed by these experts to be responsible for aggravating the social epidemic.

By fitting the anomaly of MCS into existing frameworks or theories that they do subscribe to – such as the idea that it is a belief system, or a predominantly psychosocial condition – sceptical experts are rejecting uncertainty. Rather than approaching the condition as a ‘problem’ for which biomedical science may not yet have the solution, they are rather approaching it as a ‘puzzle’ to which they only need to apply their existing paradigmatic knowledge. From their perspective there is no need to question the fundamentals of their medical knowledge or training.

Supportive experts, on the other hand, demonstrated waning faith in the current paradigmatic assumptions in biomedicine about disease and toxicity. A supportive occupational physician, for example, asserted:

MCS is different [. . .] there is needed a change in the way we think about diagnosis and pathology [. . .] It is demanding of medicine that the doctors are prepared to think perhaps our pure pathological approach to illness doesn’t apply. Given that MCS lacks the nice heart-attack-heart-in-a-bottle-that-you-can-see, given that it lacks overt physical findings such as a tumour on the chest or a paralysed limb, given that it lacks test tube laboratory tests such as full-blood counts being down, or serum sodium being up, we are left with a diagnosis which is based on the history, which is, ‘how were you before all of this happened? When did you get sick? What was the event? When did the symptoms start?’

A supportive general practitioner, furthermore, alluded to her lack of knowledge – and that of her profession – on the subject:

I mean, medicine doesn’t know [what causes MCS], I don’t think. I mean, I certainly can’t explain. Wouldn’t even begin to. I’m a GP. I’m not a scientist. I’m not a research person. I’m not an immunologist. I’m not a microbiologist. I’m not a micro-chemist. I’m a GP. I can’t even begin to say. I mean, I would hazard a guess there’s some sort of genetic predisposition to the expression of an illness like that and there’s obviously some triggers, and that’s as far as I would go. But as far as how it works, I have no idea.

Despite her international renown for her experience in the MCS area, this practitioner inarguably demonstrates here that she thinks MCS is an anomaly, and that medical science is uncertain about toxicity, yet she is reluctant to attempt an explanation. Although she defers to other medico-scientific professionals, she does not defend her profession’s efficiency in detecting poisoning, unlike the sceptical toxicologist when he commented on the wonders of neural imaging. She does not attempt to explain the condition with existing theories, such as those regarding psychosomatic conditions or odour aversion. This doctor says ‘medicine doesn’t know’ and in doing so, exhibits a lack of faith in the existing paradigm that medicine has for understanding the effect of chemical exposures on health. Unlike the sceptical position, this supportive stance involves confronting rather than avoiding medical uncertainty.

Evidence requirements

A crucial disparity between supportive and sceptical reasoning is the standard of evidence each requires to determine the legitimacy of an emergent condition. A sceptical infectious disease specialist noted that when he first heard of MCS due to the publicity surrounding one compensation case:

I researched multiple chemical sensitivity and I went to a lecture by the expert from America [Professor Mark Cullen] [. . .] And I thought that his lecture was very nice, however it had no data in it as far as I could tell. He didn’t convince me, he didn’t actually have any evidence that it existed. Now the thing about chemical sensitivity is that there’s not a scientific basis for it.

By requiring a ‘scientific basis’, this specialist emphasises his standard of proof for believing in the organic nature of an emergent environmental condition. Objective evidence of pathology must be provided for the condition to be absorbed into the mainstream canon of scientific knowledge in which he has faith. Supportive specialists, however, assumed a different epistemological position. An occupational physician explained:

The evidence that is of the most importance in thinking about the patient with MCS is the patient themselves. It is the symptoms they’ve got. It is their story. It is their history. It is what they tell you of their experience. It’s the experiential data that is absolutely crucial.

Like all the supportive experts interviewed, he stressed the importance of listening to the patient’s narrative of illness. An occupational therapist further iterated:

So it depends on if you’re choosing to believe or if you’re choosing not to believe. And so what I tend to do is when I’m looking, I go to [the MCS patient’s] home and I look at what’s happening in their home and I just start putting two and two together and I try and analyse what’s actually going on. Yeah, I can’t believe people would purposefully make their lives so miserable. I just . . . these people are struggling. These people aren’t happy.

Thus despite an absence of objective pathological evidence for the patient’s condition, if the supportive experts believed the patient to be genuine – that there was a temporal link between chemicals and ill-health – then they would conclude that what needs to be placed in doubt is the medical profession’s understanding of toxicity and standards of proof, rather than the patient’s claims. In this respect, the patient’s experience of chemical injury in compensation cases is crucial to the opinions provided by the supportive experts, whereas it is deemed to be evidence of a psychosomatic condition by the sceptics.

In sum, supportive and sceptical experts are actually problem-solving in a similar and equally scientific way – they are both using evidence-based inductive reasoning, taking data from their surroundings and then abstracting conclusions from them. However, they differ in the set of evidence they require, in their approach to uncertainty, and in their level of faith in medical knowledge of toxicity. The sceptics privilege empirical, objective evidence while the supportive experts turn to the patient’s experience as valid data if the condition seems, to them, to be an anomaly. Each therefore has a different (rational) outcome to their scientific reasoning and both believe the other is being irrational. Consequently, for the sceptics, the empirical evidence, or lack thereof, further justifies their belief in the efficacy of medical science, whereas the experiential data justifies the supportive experts’ questioning of it. The certainty of the sceptics is therefore unshaken, whereas the supporters feel somewhat disillusioned with their profession’s approach to emergent illness.

Legal impediments to medical dialogue

Despite the supporter/sceptic binary present in the community of MCS specialists in Perth, a remarkable finding lies in the discomfort a number of the experts displayed with their perceived role as predictably sceptical or supportive. Moreover, it emerged that there were a number of similarities between their perspectives. Despite some of his acerbic comments regarding the ‘unreason running through’ MCS, for example, the sceptical toxicologist noted that he does not believe in a purely psychological causation of the condition. His belief is that:

The purely physical/mental divide doesn’t really exist in medicine any more, and explanations for any illness like MCS [that] would say that it is purely psychological and purely under the control of the patient wouldn’t be accepted as consistent with the general foundations of modern medicine and psychiatry.

Though the professor made it clear that he subscribes to the view that MCS is predominantly psychological in causation, his comments emphasise that beliefs about physiological and psychological elements of MCS lie along a spectrum. Moreover, supportive experts who sympathise with the notion that MCS is chemically caused similarly acknowledge a psychological element to the condition. A geneticist who often works on MCS cases as an expert for the plaintiff admitted that she sees a convergence between the physiological and psychological elements of the condition:

[When the condition is characterised by] a psycho-emotional sort of reaction where the person is feeling sick, it might be hard to convince people that it’s real [. . .] We don’t really know how it works. And since people involved are often suffering some, let’s say, brain dysfunction by this stage [when they are seeking medical support], they may appear to be unstable and so therefore a sort of psycho-emotional explanation is appealing.

Both supportive and sceptical professionals are in agreement that MCS affects the body through an interaction between emotional, psychological and physical responses to chemicals. Their belief about it being predominantly psycho-generated or predominantly toxogenic, however, places them in a position to support either the defendant or the plaintiff in a worker’s compensation dispute. Their subsequent role on either side of the medico-legal process pits them against each other perhaps more than would occur outside a legal context, which must be explained in four parts.

First, in workers’ compensation disputes the experts are most often engaged by the plaintiff or defendant’s solicitor to determine specifically whether or not the condition was caused at work by the negligence of the employer. In other words, beyond saying such a determination is out of their field of expertise, the expert has no alternative but to state their position on whether it is or is not chemically caused. Upon entering the medico-legal process the experts are therefore automatically positioned to one side or the other.

Secondly, the correspondence between medical experts in a legal context aggravates their professional differences. When a psychiatrist, for example, has been asked by a plaintiff’s solicitor to write a report and has determined that the worker is suffering from an occupationally induced illness, the defendant will usually engage a similarly qualified psychiatrist who is likely to determine the illness was not caused in the workplace. Then follows more correspondence among the experts and the solicitors in which the medical practitioners rebut each other’s arguments. Consider the following excerpts taken from three different reports that were written to and from plaintiff and defence experts on the subject of one worker’s condition:

Ms [supportive psychologist]’s reliance upon a now aged, qualitative and quite impressionistic interpretation . . . would appear to be poor scientific practice . . . Her quotation from Tulsky is erroneous. Whilst it is probably a typographical error . . . these errors suggest [she has] had little if any experience with the [psychological test she used].

I will respond to only some of the comments made by Mr [defence psychologist] regarding my assessments and reports, as I feel that other comments made by [him] do not really warrant my attention.

The reasoning of Dr [supportive physician] seems to go from consistency to conclusion without much in the way of evidence or experienced rational analysis in between.

An ideal medical report from a solicitor’s perspective is one that supports their client’s case and, moreover, discredits the other party’s expert regarding the diagnosis he or she has made and his or her expertise in the field. Effectively discrediting the expert evidence upon which the opposition’s case relies is a good way of achieving a finding in one’s favour. These reports highlight the differences in opinion that are manifested among the medical expert community. However, this bitter professional dispute is, though not encouraged, certainly upheld by the evidential requirements of the legal system.

Thirdly, adding to an already tense medico-legal environment is the fact that in the worker’s compensation system the experts’ bills are paid by the side who has engaged them.2 This contributes to the perception amongst both lay and expert participants that those experts providing reports for the ‘other side’ are acting under a financial incentive and diagnosing accordingly. The following two quotes illustrate the way in which each side is viewed by the other. A supportive expert commented that:

there are doctors out there who work for employers and the insurance industry and they’ve got their affiliations. They’re affiliated, they get paid by these companies, and when you look at the dynamics of medical opinion regarding MCS, you pretty well only get people who are unaffiliated and are independent to say there’s a [health] problem. And you nearly universally get the people who are working for the employer saying, ‘no, there’s no problem’. And . . . they then seek out all alternative explanations.

By the same token, a sceptical expert noted:

The patients who I’m asked to give an opinion on seem to come through a very narrow channel [i.e. from the same small group of supportive legal and medical experts]. And [the patients] do seem to have seen a certain number of people and they do seem to have ended up with the same label regardless of what the real diagnosis is. So [. . .] there is this certain big concern about the litigation process, in that it forces people to suppress the real diagnosis in favour of the one that is going to hopefully pay off in the end.

Rather than the experts identifying the issue as a professional difference in opinion, both parties feel there is a more sinister reason for the other side’s diagnosis because of the litigation context in which it is produced.

Further, judicial officers have to provide reasons for their decision as to whether or not the plaintiff was injured, and if the injury was sustained at work. This presents myriad problems for magistrates, particularly when the matter at hand implicates a field of science that is complex and in its infancy (Kirby 2008). One judicial officer in Perth presiding over a case regarding a spray-painter with chemical sensitivity concluded that:

There is insufficient material for me to infer that the worker was exposed to toxic materials at a high level [. . .] it may well be that as medical science increases its knowledge in relation to exposure to toxins, conditions relating to the effects of substances such as paint and solvents may be easier to diagnose.

Although the litigant’s narrative of illness and character witnesses are significant to judicial decision-making in MCS cases, expert medical evidence tends to be the most crucial element of the courtroom debate (see also Jasanoff 1995). Moreover, despite being aware of the spectrum of medical opinion or the grey areas in the process of ‘adjudicative fact-finding’ (Stein 2005) judges must find in favour of one side, automatically implying disbelief in the other. In this respect, the law and its practitioners hold the power to determine what is factual and what is not, which in this case inherently reifies the pole between psychological and physiological causes and, moreover, between plaintiff and defence experts.

Lastly, adversarial proceedings ‘tend to foster simplistic notions of “scientific objectivity” ’, which pressures experts into ‘professing greater certainty than they really feel’ (Good 2008: S48). The way in which supportive and sceptical expert witnesses are forced to demonstrate confidence in their professional expertise in a legal context ostensibly removes some of the unknowns that plague medical knowledge about MCS, which makes the contrast between the two positions seem starker. The diagnosis of individual medical experts is not necessarily contingent on who engages them in the lawsuit. Rather, because of their supportive or sceptical tendency on the MCS issue they become embroiled in a legal dispute that further exacerbates the gulf between them.

There were, however, two significant examples in this research where the medico-legal struggle was bypassed, and in so doing, a more productive dialogue was facilitated between the supportive and sceptical factions. A supportive expert recounted an anecdote in which she had a personal encounter at a conference with a renowned sceptical expert. The sceptical expert had in the past produced many medico-legal reports that disparaged her diagnoses and he had also attempted to discredit her expertise in the litigation context. The supportive expert explained:

and I’d imagined he was a little, old, fat sort of balding man, [who was] out of touch. But in actual fact he wasn’t anything like that, and in fact I could see where he was coming from, and it was nice to meet him. And I’m sure if we could sit down and discuss things we’d probably be more this way [she aligns her hands together]. It was interesting. But, yeah, but that doesn’t happen in the real world.

The ‘real world’ this expert refers to is the medico-legal context in which the acrimony between the two parties has developed. A clinical assessment of occupational injury can obviously never be removed from the politico-economic constraints of the workers’ compensation system. However, this practitioner’s experience demonstrates that when discussion between the two sides takes place outside the formal, inherently adversarial context, areas of common ground can be more easily identified. One way in which common ground can be reached is in a gathering of experts from both sides. The Western Australian Health Department commissioned a medical panel to investigate a cluster of workers and residents alleged to have contracted MCS from a mine site. This panel brought together 19 health professionals, both sceptical and supportive, with an independent facilitator. The event entailed discussing each other’s viewpoints and listening to stories from the allegedly chemically affected workers. After a long session where everybody was able to contribute their perspective, the panel eventually concluded that there did seem to be long-term health effects arising from the company’s operations, though the exact causal mechanisms could not be isolated (nor was that the point). Unlike the occupational dispute, the matter to be discussed at this event was not related to the politico-economic questions of compensation and culpability. Rather, the experts had gathered to determine whether there was a health problem and how it should be addressed, without the moral responsibility of personally deciding where to lay blame and award damages. (The workers were, however, offered out-of-court settlements by the mining company several months after this event.) Nevertheless, in this more conciliatory context, differences between the supportive and sceptical approaches were less stark and consensus was eventually reached. The advantages of this sort of event highlight the inefficiency of the usual adversarial legal proceedings for resolving debate among experts.

Conclusion

The positive outcome of the above deliberative interactions between experts resonates with a theme emerging from the literature on CFS. Although consensus has been reached to some extent on the multi-factorial nature of CFS (Afari and Buchwald 2003), theorists from both the medical and social science fields have sought to understand the continual battlefield that is the CFS provider–patient encounter (Aronowitz 1998, Asbring and Narvanen 2003, Banks and Prior 2001, Huibers and Wessley 2006). The research approach and conclusions differ in the range of studies conducted about CFS; however, all the authors agree on several fundamental points. Firstly, the current clinical approach to treating unexplained somatic conditions continues to be therapeutically inadequate. Furthermore, and most importantly, experts are not comfortable with the contestation surrounding these conditions. They agree that CFS and other similarly contested conditions are a combination of psychological and physiological factors and ultimately wish to reconcile the objective evidence of pathology with the patient’s experience of disease.

The research discussed in this article demonstrates that the same areas of agreement exist among supportive and sceptical experts involved with MCS in Perth. There are marked differences between their ways of doing science yet, when face-to-face discussion and debate is facilitated between the two factions, the similarities in their equally scientific and inductive approach are highlighted. In this context genuine dialogue is facilitated and points of consensus can be reached.

However, when the quest for MCS legitimacy is tied up in the medico-legal field, as it is in Western Australia, discussion between experts is hindered by the inherently polarising legal process. To some extent, advocacy groups for an environmental condition, the environmental health movement generally, and the publicity that stems from environmental health disputes, increase social awareness about the condition and can be perceived as bolstering its legitimacy in the sociocultural milieu (Klawiter 2005). In turn, health social movement scholars suggest that popular approaches to science and a gradual cultural shift can provide a successful epistemic challenge to scientific paradigms and improve clinical approaches to emergent conditions (Brown 1992, Klawiter 2005, Kroll-Smith and Floyd 1997). However, medico-scientific contestation remains a crucial hurdle to legitimacy for people with a medically unexplained condition. When expert debate gets subsumed into an occupational dispute it engenders bitterness between the two sides, which in turn further constructs the disease as controversial. Supportive and sceptical experts involved in these cases go on to act as consultants for the plaintiff or defendant in future lawsuits, inform media representation of the condition and advise government departments about industries in which the condition or claims about the condition occur. These experts are, consequently, key players in the local construction of MCS as well as contributors to the global medico-scientific debate. It appears that the legal process is strengthening each expert’s view that the other is practising bad science for unethical reasons. As such, this adversarial legal process limits the productive dialogue that could potentially occur between them. For chemically sensitive individuals, this medico-scientific contestation is contributing to a patient–provider encounter that is often fraught with tension and is therapeutically unproductive (Engel et al. 2002). Based on the findings presented here, it would appear that more consensus meetings should occur between supportive and sceptical experts who work with people who suffer from contested emergent illnesses. Ideally, this would occur before lengthy occupational disputes over these conditions are played out on the medico-legal stage.

Footnotes

  • 1

     This is in contrast to a more equal split within the medico-scientific community (Donnay 1998).

  • 2

     That is, until one party may be ordered to pay the costs of the other party.

Acknowledgements

I would like to acknowledge Beverley McNamara and Martin Forsey for commenting on earlier drafts of this article, and the anonymous reviewers for their insightful comments and suggestions.

Ancillary

Article Information

DOI

10.1111/j.1467-9566.2010.01255.x

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© 2010 The Author. Sociology of Health & Illness © 2010 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

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Publication History

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Keywords

  • contested illness;
  • multiple chemical sensitivities (MCS);
  • medically unexplained physical symptoms (MUPS);
  • expert disagreement;
  • uncertainty

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