Collaborative development of an innovative provocation protocol in studying electrohypersensitivity

Introduction

Electrohypersensitivity syndrome (EHS) constitutes a relatively new public health issue. It is characterised by a variety of non-specific symptoms that are attributed to electromagnetic fields (EMF) by electrohypersensitive people (EHP). However, despite the great distress of certain individuals, symptoms cannot be objectively attributed to EMF so far: epidemiology and provocation studies have not allowed yet establishing a direct causal link with the appearance of symptoms (Rubin et al., 2010, 2011).

Some researchers concluded that the nocebo effect is the probable cause of EHS (Regel et al., 2006; Oftedal et al., 2007; Rubin et al., 2010). In this context, the future of provocation studies is questioned: could they still provide advances in the knowledge?

Methodological limits are expressed by EHP and associations: inadequate inclusion criteria, diversity of individual sensitivities, latency in the appearance of symptoms, health status before exposure… Highlighting several drawbacks, Leszcynski (2018) stated that even an improved methodology would not allow providing objective and reliable scientific data. However, EHP remain convinced of the relevance of provocation studies. Their results appear even more unacceptable to EHP so as their conviction of the electromagnetic origin and the results of their own experiments (Dieudonné, 2016; Prignot, 2016). Moreover, it has been observed that symptoms often occur before establishing a link with EMF (Bergqvist & Vogel, 1997; de Graaff & Bröer, 2012; Dieudonné, 2016). The nocebo effect could therefore explain the persistence or aggravation of the symptoms, but not their initial appearance (Dieudonné, 2016). EHP request protocols that would fully consider the specificity of their condition (Prignot, 2016).

Research is continuing, and original methodologies are being developed considering the observations and suggestions of EHP (Huss et al., 2016; Andrianome, 2017; van Moorselaar et al., 2017) and under real-life conditions (Baliatsas et al., 2015b; Bolte et al., 2015).

Provocation studies have not exhausted their interest yet. They can contribute to the knowledge of EHS by exploring unusual exposure modalities, especially since studies in real conditions do not yet allow a comparable dosimetric precision to be achieved, nor to distinguish as precisely the contributions of the various factors involved. These innovative studies need to integrate the criticisms of stakeholders when they are scientifically legitimate. The ExpoComm project intends to develop an original provocation test to radiofrequency electromagnetic fields that would meet acceptability criteria for individuals with self-reported EHS.

Note: ExpoComm is funded by The French National Research Program for Environmental and Occupational Health of Anses (EST/2017/2 RF/19).

Phases of the ExpoComm project

The ExpoComm project is divided into two phases. In the first phase, two workshops are planned to think about the conditions required to meet the needs of EHP. For that purpose, limits of the current provocation tests will be analysed and solutions will be explored through an iterative co-creation process involving various actors: EHP, researchers and technical experts. In the second phase, EHP will have the opportunity to test the protocol.

In this paper, we are focusing on the description of the first phase description.

Implementation of the first phase

The process used in this first phase is supported by the Wallonia e-health Living Lab (WeLL, http://well-livinglab.be/), specialized in the co-creation of technological solutions in the field of health, involving future users. Their experience in the organisation of co-creation workshops will ensure that brainstorming sessions prior to the development of the protocol are carried out as efficiently as possible. Focus is given to a precise definition of needs.

This phase is in progress; workshops are planned in April and May 2018. At the time of BioEM2018, both workshops will have taken place. Results and challenges will be presented.

Objectives of the workshops

A first meeting was organized by the WeLL in January 2018 to define the specifications of the workshops and the action of the WeLL. All ExpoComm project collaborators attended this meeting. Limitations related to provocation tests and requirements involving good practices in science were discussed.

A list of compelled criteria and of those that are open to discussion was drawn. Some of the compulsory criteria include the need to:

• explore links between defined EMF sources and symptoms through individualized double blinded conditions of exposure, taking care of minimizing potential nocebo responses;
• clarify the status of these responses by trying to reduce the anxiogenic character of the tests and by comparing EHP to a control population sharing similar psychometric characteristics.

Attention will be given to individualize exposure sessions (duration, latency, signal…), to limit nocebo responses, and to handle the actual sensitivity. These criteria will be targeted in the first workshop and collectively debated.

An on-going evaluation of the co-creation process will be conducted to explore the relevance of collaborating with EHP in the development of the study protocol.

The second workshop will be conducted as a usability test aiming to evaluate the acceptability of the protocol.

Recruitment of volunteers

As early as March 2017, before submitting the ExpoComm project to Anses, we contacted a Belgian association active in EHS recognition to solicit collaboration. However, the length of time required to establish contacts did not allow including them.

New contacts were made in October 2017 when the ExpoComm project had been approved by Anses. Currently, this association does not wish to become involved in the study because of questions about the direction taken by the study and our financial independence. We hope that the quality of the work that will be provided in the first stage will help ensuring their interest and establishing a climate of trust. Their participation in the second stage of the project would be valuable.

Following discussions with this association and several people, a document explaining our reflections on EHS, the objectives of the study, its planning and the source of funding was drafted. This document was sent to various contacts established with other associations and with people met at public seminars. Anyone wishing further information was also invited to contact us to discuss his or her questions.

Currently eight EHP have agreed to participate to the workshops. Some of their characteristics are summarized in Table 1, based on informal interviews. A dedicated questionnaire is developed to assess the level of sensitivity, the confidence of being sensitive to defined sources, the impact of this sensitivity in daily life, adaptations made to manage exposure, the general sensitivity and symptomatology.

Table 1 – Characteristics of the volunteers

The varied profiles of participants suggest that the range of contributions will be very broad. Nevertheless, we would welcome some additional participants to ensure the widest possible reflection on the issue.

References

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Baliatsas, C., Bolte, J., Yzermans, J., Kelfkens, G., Hooiveld, M., Lebret, E., & van Kamp, I. (2015). Actual and perceived exposure to electromagnetic fields and non-specific physical symptoms: an epidemiological study based on self-reported data and electronic medical records. Int J Hyg Environ Health, 218(3):331-44.

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