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*. Health complaints as published by electro-hypersensitivity (EHS) sufferers. 

*. Health complaints as published by electro-hypersensitivity (EHS) sufferers. 

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Article
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This paper analyses the process of establishing a risk object - electromagnetic fields. This example will be used to examine risk categorisation as such, and to explore how individual and collective attempts to establish a new risk interact with health policy. We studied people who claim to suffer from electro-hypersensitivity. We conducted partici...

Citations

... Indeed, in most of European countries, its sufferers are struggling to obtain its legal and medical recognition as a genuine disease [34,35]. Many patient associations and practitioners are fighting for EHS recognition, both politically and scientifically. ...
Article
Patients’ experiential knowledge is increasingly recognised as valuable for biomedical research. Its contribution can reveal unexplored aspects of their illnesses and allows research priorities to be refined according to theirs. It can also be argued that patients’ experiential knowledge can contribute to biomedical research, by extending it to the most organic aspects of diseases. A few examples of collaboration between medicine and patient associations are promising, even if there is no single, simple methodology to apply. This article provides feedback on a project involving the experiential knowledge of electrohypersensitive persons with a view to developing an experimental protocol to study their condition. It presents the participatory approach with focus groups that was implemented and reflects on ways to take advantage of experiential knowledge. It also demonstrates the complexity of the electrohypersensitivity syndrome and reflects on the difficult transition between the experiential knowledge and the experimental design of provocation studies. • KEY MESSAGES • Experiential knowledge is a valuable source of information for research and the design of investigation protocols. • The participatory approach allows co-designing protocols by drawing on experiential knowledge. • The controversial dimension of EHS reveals the complexity of translating experiential knowledge into an experimental protocol.
... Nonetheless, such nocebo effects should not be regarded as the only explanation for IEI-EMF symptoms. They are not exclusive of other causes, as established by qualitative studies of the trajectories of people with IEI-EMF, consistently demonstrating that they start feeling sick before becoming suspicious of EMF [de Graaff and Bröer, 2012;Dieudonné, 2016Dieudonné, , 2019. The nocebo hypothesis, as such, does not disprove the existence of a physical effect of EMF exposure. ...
Article
The hypothesis of an electromagnetic origin of idiopathic environmental intolerance (IEI) attributed to electromagnetic fields (EMF) has been widely investigated by provocation studies, which consist of deliberately exposing people with IEI‐EMF in laboratory settings to particular EMF to observe volunteers’ reactions. In the majority of these studies, reactions have been found to be independent of exposure. However, most of these studies suffer from design and methodological limitations that might bias their findings or reduce their precision. As provocation studies are best suited for isolating the effects of EMF, innovative protocols should be applied. In the ExpoComm project (PNREST Anses, EST/2017/2 RF/19), several innovations have been introduced: the involvement of people with IEI‐EMF in the development of the protocol, the attenuation of the anxiogenic nature of the tests, the individualization of the protocol, the validation of the neutral or normal reactivity state before the test, and the use of a cocktail of real, rather than artificially generated, sources. The objective of involving people with IEI‐EMF was to increase the relevance and acceptability of the protocol, while respecting technical constraints and scientific quality requirements. This paper describes the protocol resulting from the collaborative process. Bioelectromagnetics. © 2020 Bioelectromagnetics Society
... EHS is also characterized by specific and sometimes spectacular behaviours, that intermittently draw attention from the media and make it known from the public. These include getting rid of personal electronic devices, avoiding highly exposed places like shopping centres or public transports, wearing EMF-shielding clothes, sleeping under protective canopies, or taking shelter in isolated woods or caves [7][8][9]. ...
... A similar argument can be drawn from the discrepancy between the diffusion of alarmist media reports, the prevalence of EMF-related worries in the general population, and the actual number of EHS persons. In the Netherlands in 2010, for instance, 24% of persons aged 15 and over declared themselves very or fairly concerned by the potential health risks of EMF [97], but only one EHS support group was active with around 300 members [7]. In France, the only EHS support group existing at this time was about the same size, while the levels of concern were even higher, reaching 49% on a similar sample [97]. ...
... The last limitation of the cognitive hypothesis is its inconsistency with EHS persons' trajectories and experience, as documented by qualitative studies [7][8][9]. In most cases, these trajectories do not begin with the reception of alarmist information on EMF health effects, but with the onset of an illness for which EHS eventually appears as an explanation. ...
Article
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Background Electromagnetic hypersensitivity (EHS) is a condition defined by the attribution of non-specific symptoms to electromagnetic fields (EMF) of anthropogenic origin. Despite its repercussions on the lives of its sufferers, and its potential to become a significant public health issue, it remains of a contested nature. Different hypotheses have been proposed to explain the origin of symptoms experienced by self-declared EHS persons, which this article aims to review. Methods As EHS is a multi-dimensional problem, and its explanatory hypotheses have far-reaching implications, a broad view was adopted, not restricted to EHS literature but encompassing all relevant bodies of research on related topics. This could only be achieved through a narrative approach. Two strategies were used to identify pertinent references. Concerning EHS, a complete bibliography was extracted from a 2018 report from the French Agency for Food, Environmental and Occupational Health & Safety and updated with more recent studies. Concerning related topics, the appropriate databases were searched. Systematic reviews and expert reports were favored when available. Findings Three main explanatory hypotheses appear in the literature: (1) the electromagnetic hypothesis, attributing EHS to EMF exposure; (2) the cognitive hypothesis, assuming that EHS results from false beliefs in EMF harmfulness, promoting nocebo responses to perceived EMF exposure; (3) the attributive hypothesis, conceiving EHS as a coping strategy for pre-existing conditions. These hypotheses are successively assessed, considering both their strengths and limitations, by comparing their theoretical, experimental, and ecological value. Conclusion No hypothesis proves totally satisfying. Avenues of research are suggested to help decide between them and reach a better understanding of EHS.
... Ils commencent aussi à militer pour la reconnaissance de l'EHS par les institutions médicosociales, en tant que maladie spécifique provoquée par les CEM. Ils revendiquent notamment l'adoption de mesures de prévention, ce qui revient à faire de l'EHS un problème de santé publique [21], ainsi que la pérennisation de « zones blanches » où ils puissent s'abriter des CEM. ...
Article
For two decades, health effects of electromagnetic fields (EMF) and electromagnetic hypersensitivity (EHS) have become increasingly controversial topics in France. They constitute "low noise" public problems, whose construction seems impossible to complete : they can neither be eliminated from the political agenda nor durably included. This article analyses the political process leading to this situation using qualitative data. In line with previous studies of the dispute surrounding mobile phone base stations, it shows how the controversy around EMF health effects emerged from an urban planning problem subsequently converted into a public health issue. This conversion gave rise to a spin-off controversy surrounding EHS, which quickly grew to become a controversy of its own. The study of these controversies reveals how the democracy crisis affecting public risk management increases the risk of false health alarms. It also explains why EHS fails to get as medically recognized as other functional somatic syndromes, like fibromyalgia. Medically unexplained symptoms thus appear likely to contribute significantly to health controversies.
... Yet, the genesis of these attributions is not well understood. To date, only two studies have attempted to document it: the first in the Netherlands [de Graaff and Br€ oer, 2012] and the second in France [Dieudonn e, 2016]. Their results converge in demonstrating that the conviction that one is EHS develops quite late, subsequent to the onset of chronic and disabling health problems, and the failure to obtain a satisfactory medical solution. ...
... Only then do the persons affected discover EHS, often fortuitously, and begin to regard it as a possible explanation for their symptoms. Their next step is to seek confirmation, which they obtain from "building biologists" [de Graaff and Br€ oer, 2012] or by conducting small experiments which enable them to link their symptoms to the electromagnetic environment [Dieudonn e, 2016]. Then only do they become convinced that they are EHS. ...
Article
Idiopathic Environmental Intolerance attributed to Electromagnetic Fields (IEI-EMF) is an emerging environmental illness that is characterized by the attribution of various symptoms to electromagnetic fields (EMF). To date, research has not succeeded in objectifying the illness' semiology or etiology. IEI-EMF remains impossible to define other than in terms of the attributions of the persons affected. Yet, the genesis of these attributions is still not well understood. This study's objective is to replicate previous results relating to them, while correcting their limitations. Sixteen electro-hypersensitive (EHS) subjects lent themselves to both a sociological interview and a medical interview, and completed a set of standardized questionnaires. Three distinct types of biographical trajectories leading to persons becoming convinced of their hypersensitivity were identified, which were called the Reticent Attribution model, the Prior Attribution model, and the By Proxy Attribution model. These three models of EHS attribution process do not appear to lead to clinically distinct forms of IEI-EMF. What distinguishes them is the way in which the initial suspicion of the electromagnetic environment emerges. They demonstrate a diversification of the pathways to IEI-EMF. Nonetheless, in each model, the learning process that enables the EHS attribution to be materialized and operationalized is identical. The ability to establish causation between the electromagnetic environment and their condition is therefore the result of EHS subjects' trajectories, rather than their starting point. This observation is not congruent with models attributing IEI-EMF to nocebo reactions, which raises the question of these models' ecological validity.
... Evidence for this mechanism was seen in provocation studies with sham exposure (9,26). Conversely, the experience of symptom distress may lead to a search for a cause of these symptoms (33,34) and increased attention to potential exposures. Attention focusing can amplify the perception of physical signals, a process described as somatosensory amplification (26,35,36). ...
... Adequate risk communication can improve understanding of EMF exposure in the general population (50) and may prevent the development and/or increased reporting of symptoms, in part. However, the pathways between perceived exposure and symptoms may be bidirectional, or perhaps experiencing symptoms typically precedes concern about environmental exposures (33,34). This may partly explain why our longitudinal cohort analyses did not show temporal precedence of perceived exposure before an increase in symptoms. ...
Article
We assessed associations between modeled and perceived exposure to radio-frequency electromagnetic fields (RF-EMF) from mobile-phone base stations and the development of nonspecific symptoms and sleep disturbances over time. A population-based Dutch cohort study, the Occupational and Environmental Health Cohort Study (AMIGO) (n = 14,829; ages 31-65 years), was established in 2011/2012 (T0), with follow-up of a subgroup (n = 3,992 invited) in 2013 (T1; n = 2,228) and 2014 (T2; n = 1,740). We modeled far-field RF-EMF exposure from mobile-phone base stations at the home addresses of the participants using a 3-dimensional geospatial model (NISMap). Perceived exposure (0 = not at all; 6 = very much), nonspecific symptoms, and sleep disturbances were assessed by questionnaire. We performed cross-sectional and longitudinal analyses, including fixed-effects regression. We found small correlations between modeled and perceived exposure in AMIGO participants at baseline (n = 14,309; rSpearman = 0.10). For 222 follow-up participants, modeled exposure increased substantially (>0.030 mW/m2) between T0 and T1. This increase in modeled exposure was associated with an increase in perceived exposure during the same time period. In contrast to modeled RF-EMF exposure from mobile-phone base stations, perceived exposure was associated with higher symptom reporting scores in both cross-sectional and longitudinal analyses, as well as with sleep disturbances in cross-sectional analyses.
... Activists were invited to 'consultation' and communication events. After 2006, attention shifted from general health risks to electro-hypersensitivity (ES) and the relatively small group of citizens claiming to directly suffer from exposure to EMFs (de Graaff & Bröer, 2012 ). The government's response was to take their suffering seriously while denying any causal relation with exposure to EMFs. ...
Article
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This article puts forward an interactionist discourse approach for studying the course of local political protest. We argue that how local policy-makers engage with the (anticipated) demands of citizens and mediate national policy produces distinct framing and feeling rules about potentially controversial issues. These framing and feeling rules open up or close down opportunities for citizen concerns to develop into collective action and policy change. Our contribution refines cultural approaches to social movement theory, focusing on local interactions in the formation of discourse, and allows us to better understand within-country variation in the course of contentious collective action. We develop our argument through a comparison of sixteen cases of installing mobile phone cell sites in the Netherlands. We show that the interaction between municipalities and citizens establishes a specific framing of the issue, of the role of citizens in decision-making and of the rules concerning what citizens may legitimately feel about mobile phone masts being erected in their neighbourhoods. This gives rise to four typical patterns of engagement between municipalities and citizens.
... The public experience of electromagnetic fields is therefore unavoidably mediated through expertise and technologies of measurement. Other than those people who claim to be "electrosensitive" (detecting and suffering from surrounding fields) (Soneryd, 2007;De Graaff and Bröer, 2012) or those who, as electrosensitive people often do, arm themselves with personal dosimeters (see Mitchell and Cambrosio, 1997), EMFs remain uncanny (or, as Nordmann (2005) puts it, "noumenal"). In the main, to use the distinction adopted by Soneryd (2007;following Michael, 2002), our comprehension of EMFs is detached from our embodied prehension. ...
Article
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The UK controversy over the health risks of mobile phones was at its peak around 1999–2000, at a time when policymakers were beginning to endorse moves towards greater openness in the practice of expert advice. One explanation for the subsequent calming of this controversy is that people’s sense of the benefits outweighed the minor uncertainties. However, this fails to explain the politics of mobile phone technology and, by positioning expert advice as neutral, offers no lessons for future expert practice. In this article, I argue that the mobile phones case can more productively be seen as one of public experiment. Rather than seeking closure, experts opened up the issue, made explicit previously obscured uncertainties and invited new research questions. In doing so, they remobilised previously static constructions of both science and public concern. This analysis challenges the distinction between science-as-expertise and science-as-experiment, with important implications for advisory practices and structures. This article is published as part of a thematic collection dedicated to scientific advice to governments.
... Previous cross-sectional studies showed a relationship between causal beliefs involving environmental exposures and the intensity of experienced symptoms (Bailer et al., 2007;Baliatsas et al., 2014;van Dongen et al., 2014). Interviews with IEI-EMF patients indicate that their attribution of symptoms to EMF began with a period of suffering from non-specific health complaints (de Graaff and Broer, 2012) and case reports suggest that symptoms became worse when the conviction of EMF as a cause of these complaints became stronger (Bergqvist and Vogel, 1997). Our findings in a general population sample suggest a reciprocal relationship. ...
Article
Background: Experimental studies suggest that nocebo responses might occur after exposure to equipment emitting electromagnetic fields such as high voltage power lines (HVPLs) or mobile phone base stations. Objectives: The present study investigates to what extent health responses to a new HVPL can be explained by beliefs of residents regarding the health effects of HVPLs. Methods: We used a quasi-experimental prospective field study design with two pretests during the construction of a new HVPL, and two posttests after it has been put into operation. Residents living near (0-300m, n=229; 300-500m, n=489) and farther away (500-2000m, n=536) filled out questionnaires about their health and their beliefs about the negative health effects of power lines. Longitudinal mediation models were applied to investigate to what extent these beliefs could explain a change in reported symptoms after the new line was put into operation. Results: Significant (p<.01) indirect effects were found for proximity on the increase in reported cognitive (R(2)=0.41) and somatic (R(2)=0.79) symptoms after the power line was put into operation through an increase in the belief that power lines causes health effects. The direct effects of proximity on an increase in reported symptoms were not significant. Conclusions: Our findings suggest that increases in reported health complaints after a new HVPL has been put into operation can be explained by nocebo mechanisms. Future field studies are needed to know whether our findings extend to other environmental health issues in a community.
... This tendency is strengthened by medicalisation 'from below' and 'from above'. The former type refers to peoples' attempts to secure medical diagnoses (Becker & Nachtigall, 1992;De Graaff & Bröer, 2012). Medicalisation 'from above' concerns the introduction of market mechanisms that enhance health awareness by requiring people to make health care choices, the introduction of patient-centred approaches in health care and the pharmaceuticalisation of everyday life (Abraham, 2010;Ashton & Seymour, 1988;Conrad, 2005;Greco, 1993;Sullivan, 2003;Williams, 2001). ...
Article
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Sociological theories of health risks in late modernity emphasise the individualisation and increasing anxiety that results from prevention policies, while bio-sociality theories point to the creation of new, biologically or medically based social identities. In this article, we outline an alternative approach. We use micro-sociological interaction ritual theory to examine how health risk prevention technology shape interactions that generate collective identities. Drawing on fieldwork in two Dutch villages in 2008–2009 and again in 2014 that created interview, survey and observational data, we show that automatic external defibrillators turned into symbols of collective identity that elicited feelings of group membership, reflected moral values and filled community members with pride. We demonstrate that this collective identity formation process was shaped by the institutional and technological network of the automatic external defibrillators. In the concluding section of the article, we explore the conditions under which health-related collective identities might develop, particularly with regard to the institutions that create health policies and foster health risk awareness.