Exposure Perception and Symptom Reporting in Idiopathic Environmental Intolerance Attributed to Electromagnetic Fields Using a Co-Designed Provocation Test

Idiopathic Environmental Intolerance Attributed to Electromagnetic Fields (IEI-EMF) is a syndrome that defines people who report symptoms that they attribute to their exposure to EMF sources, without any identified underlying medical condition to explain these symptoms. To date, provocation protocols have failed to demonstrate a consistent relationship between EMF exposure and reported symptoms, raising questions among some researchers and individuals with IEI-EMF about the relevance of these protocols for studying the syndrome. To address these criticisms, a provocation protocol was co-designed in collaboration with individuals with IEI-EMF. This study presents the results of the tests, with a focus on exposure perception and symptom reporting among IEI-EMF volunteers. A total of 47 IEI-EMF volunteers were enrolled and participated in an open-field habituation session. Of these, 27 completed the first double-blind controlled exposure session, while 26 and 16 volunteers, respectively, participated in three sessions for collective analyses and 12 sessions for individual-level analyses. At the individual level, no consistent association was found between exposure perception certainty level and exposure status, except for one volunteer whose perception was mostly consistent with exposure status. Similarly, symptom reporting did not align with exposure status, except for the same volunteer, whose symptom reporting showed a borderline significant result with exposure status. However, for half of the volunteers, symptom reporting was significantly correlated with exposure perception certainty level, supporting a nocebo hypothesis. At the collective level, no consistency was observed between exposure perception certainty level, symptom reporting, and exposure status. This study discusses the conditions necessary for future provocation protocols to enhance their relevance, acceptability, and potential utility in a possible care-oriented approach. It also considers criticisms of using exposure perception and symptom reporting as outcomes in provocation protocols, despite their central role in how individuals identify themselves as individuals with IEI-EMF.