TY - Generic T1 - Collaborative development of an innovative provocation protocol in studying electrohypersensitivity Y1 - 2018 A1 - M. Ledent A1 - M. Dieudonné A1 - J. Bordarie A1 - W. Pirard A1 - B. Vatovez A1 - C. Geuzaine A1 - V. Beauvois A1 - Luc Verschaeve AB -

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:

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

 

Sex

Age group

Duration of EHS (> 7 years)

Employment status

EHP1

F

> 60 y

Yes

Inactive

EHP2

M

40-60y

No

Active

EHP3

F

40-60y

No

Active

EHP4

M

20-40y

/

Active

EHP5

M

40-60y

Yes

Active

EHP6

M

40-60y

Yes

Active

EHP7

F

40-60y

(In questioning)

Active

EHP8

M

> 60 y

Yes

Inactive

 

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

Andrianome, S. (2017). Intolérance environnementale idiopathique avec attribution aux champs électromagnétiques (IEI-CEM) : Étude des systèmes endocrinien, nerveux sympathique et immunitaire, Thèse de doctorat en Biologie et Santé, Amiens, Université de Picardie Jules Verne.

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.

Bergqvist, U. & Vogel, E. (1997). Possible health implications of subjective symptoms and electromagnetic field. A report prepared by a European group of experts for the European Commission, DGV. Arbete och Hälsa, 1997:19. Swedish National Institute for Working Life, Stockholm, Sweden. ISBN 91-7045-438-8.

Bolte, J.F.B., Baliatsas, C., Eikelboom, T., & van Kamp I. (2015). Everyday exposure to power frequency magnetic fields and associations with non-specific physical symptoms. Environmental Pollution (Barking, Essex: 1987), 196, 224‑229.

de Graaff, M. B., & Bröer, C. (2012). ‘We are the canary in a coal mine’: establishing a disease category and a new health risk. Health, Risk & Society, 14(2):129-147.

Dieudonné, M. (2016). Does electromagnetic hypersensitivity originate from nocebo responses? Indications from a qualitative study. Bioelectromagnetics, 37(1):14-24.

Huss, A, Murbach, M, van Moorselaar, I, Kuster, N, van Strien, R, Kromhout, H, Vermeulen, R, & Slottje P. (2016). Novel exposure units for at-home personalized testing of electromagnetic sensibility. Bioelectromagnetics, 37(1):62-8.

Leszcynski,, D. (2018, February 11). Brief report on the EHS provocation studies. Retrieved from https://betweenrockandhardplace.files.wordpress.com/2018/02/leszczynski-updated-brief-report-on-ehs2.pdf

Oftedal, G., Straume, A., Johnsson, A., & Stovner, L.J. (2007). Mobile phone headache: a double blind, sham-controlled provocation study. Cephalalgia, 27(5):447-55.

Prignot N. (2016). L’onde, la preuve et le militant. L’écosophie de Félix Guattari à l’épreuve de l’électrosensibilité et de la polémique sur les dangers des ondes électromagnétiques, Thèse de doctorat en philosophie, Bruxelles, Université Libre de Bruxelles, 444 p.

Regel, S.J., Negovetic; S., Röösli; M., Berdiñas; V., Schuderer; J., Huss; A., Lott; U., Kuster; N., & Achermann, P. (2006). UMTS base station like exposure, well being and cognitive performance. Environmental Health Perspectives, 114 (8):1270-1275.

Rubin G.J., Nieto-Hernandez R. & Wessely S. (2010). Idiopathic environmental intolerance attributed to electromagnetic fields (formerly “electromagnetic hypersensitivity”): An updated systematic review of provocation studies. Bioelectromagnetics, 31(1):1-11.

Rubin G.J., Hillert L., Nieto-Hernandez R., van Rongen E. & Oftedal G. (2011). Do people with idiopathic environmental intolerance attributed to electromagnetic fields display physiological effects when exposed to electromagnetic fields? A systematic review of provocation studies. Bioelectromagnetics, 32(8):593-609.

van Moorselaar I, Slottje P, Heller P, van Strien R, Kromhout H, Murbach M, Kuster N, Vermeulen R, & Huss A. (2017). Effects of personalised exposure on self-rated electromagnetic hypersensitivity and sensibility - A double-blind randomised controlled trial. Environ Int, 99:255-262.

JF - BioEM2018, 24-29 June 2018 CY - Portorož, Slovenia CP - Joint meeting EBEA/BEMS ER -