[Drivers and barriers in participating to an exposure study in electrohypersensitivity]

People reporting electromagnetic hypersensitivity (EHS) attribute various functional disorders to their exposure to electromagnetic fields (EMF). To date, the results of provocation studies do not support the existence of a causal relationship between EMF and the reported symptoms. However, these studies suffer from various methodological limitations, including low statistical power due to an insufficient number of volunteers.

The objective of this paper is to present the motivations of EHS people who participated in co-creation workshops towards the development of a provocation protocol that would overcome the limitations of existing studies and improve EHS knowledge.

In a first phase, participants were invited to discuss the reasons for (not) participating in such a provocation study in order to understand barriers and challenges. Among the drivers, the improvement of the knowledge and the sensitization of the medical profession, as well as the official recognition of EHS and its implications are of great importance. The participants also stress the interest of getting to know themselves better and see the study as a step in the development of therapeutic tools. Among the barriers, people emphasize fears about the project independence and results neutrality, as well as methodological choices. Some also highlight the consequences of the test on their health (suffering) and social aspects.

We identify precautions and recommendations for the implementation of a collaborative work with EHS people and in their perennial inclusion in an exposure study.