Pilot questionnaire survey shows the lack of diagnostic criteria for electromagnetic hypersensitivity: a viewpoint

Introduction

The rapid technological progress in wireless communication has created new ways of providing clinical health services. The rapid development of telemedicine impacts the quality, cost-effectiveness, and access to healthcare. The deployment of the fifth generation of wireless communication technology (5G) and the beginning of the deployment of the sixth generation of wireless technology (6G) are making telemedicine services faster and more reliable as well as more versatile due to the dramatic shortening of the latency period between sending and receiving wirelessly information. However, as with any technology, there are concerns about the potential impact on human health and society in general.

Wireless communication devices and networks are currently prevalent in human environment. Some persons claim to be sensitive to emitted by them microwave radiation (1). The sensitivity was originally called a ‘microwave disease’ (2). Currently, this sensitivity is called electromagnetic hypersensitivity (EHS). However, because of the yet scientifically unproven link between radiation exposures and EHS symptoms, this sensitivity is also called idiopathic environmental intolerance attributed to electromagnetic fields (IEI-EMF) (3).

The World Health Organization (WHO) does not consider EHS as a disease or as being caused by exposures to wireless radiation (3). The symptoms experienced by the persons claiming to be EHS are numerous and unspecific. The real cause of the symptoms, whether wireless radiation or other environmental factors, is not established by the to-date executed scientific studies. Persons considering themselves as experiencing EHS, the self-declared EHS, have numerous health-related symptoms affecting their professional and private lives. However, they do not receive help from health professionals because the curriculum for medical students does not prepare them for dealing with EHS physiological and psychological symptoms experienced by the self-declared EHS persons. There is also a lack of public health policies that would help medical professionals to deal with the EHS. Finally, the scientifically unresolved status of the EHS adds to the confusion among both medical professionals and self-declared EHS persons (4).

The scientific proof of individual sensitivity to wireless radiation remains missing because the published science on EHS is limited and of inadequate scientific quality (2,5-11). However, even though the scientific proof of EHS remains elusive, logically it is possible to consider that some form of individual sensitivity to very low doses/dose-rates of wireless radiation exists, similarly to the existence of individual sensitivity to all known environmental pollutants (11,12).

Currently, there are no medical criteria and tests for objective scientific diagnosis of individual sensitivity to wireless radiation. However, there are self-declared EHS persons claiming to have a diagnosis made by a medical professional. This means there is a contradiction between the lack of diagnostic criteria and parallel claims of medical diagnosis of EHS. To address this contradiction, a pilot volunteer questionnaire study was set up to find out what medical tests and criteria are used by the rare medical professionals who did diagnose EHS.

Execution and results of the questionnaire survey

Set-up of a volunteer pilot-questionnaire study

An open call for volunteers, the self-declared EHS claiming to be diagnosed by a medical professional was issued in 2022. An 18-question questionnaire was posted on the internet on April 11, 2022 (13). Additionally, representatives from EHS organizations in Italy, Germany, Holland, France, Finland, and Norway were contacted to disseminate the information. The questionnaire was published in seven languages: English, Finnish, German, French, Dutch, Italian, and Spanish. The total number of downloaded questionnaires was 1,253. The language distribution of downloaded questionnaires was as follows: English—609, Finnish—260, German—182, French—89, Dutch—48, Spanish—28, and Italian—37.

A total of 142 self-declared EHS persons responded to the call and sent the answers to the questionnaire. From the total number of 142 responders only 62 (43.7%) had a physician’s EHS diagnosis. It was considered insufficient for statistical analyses of correlations between different collected parameters. Furthermore, some of the questions were not answered at all or only partly by many respondents, mostly due to a very limited knowledge and/or awareness of their own exposure parameters (https://betweenrockandhardplace.wordpress.com/wp-content/uploads/2022/04/questionaire.pdf). Therefore, the final analysis of responses was limited to the following, most completely answered, nine questions:

• Where do you live—country?
• How did you learn about EHS—have you heard of EHS before you experienced health symptoms or did you experience health symptoms first and only then you did search for information on what might cause your health symptoms?
• What is, in your opinion, causing your own EHS symptoms, and what kind(s) of exposure?
• Do you know, from your own experience, ways and means how to prevent or alleviate your own EHS symptoms?
• Are your EHS symptoms occurring immediately or with a delay after the radiation exposure?
• Are there any factors [weather, pollen, ultraviolet (UV), etc.] that make your EHS symptoms stronger or easier to be triggered?
• If a physician has diagnosed your EHS—what was the basis of the diagnosis—solely your verbal description of symptoms or did the physician perform any examination and clinical tests?
• If the physician made a diagnosis using clinical tests—what tests were done and what results or changes were observed?
• Did you receive any advice, from the physician, on how to prevent or alleviate your symptoms?

Country distribution of participants

The country distribution of the 142 self-declared EHS persons was as follows: Germany—16, UK—16, France—15, Belgium—13, Finland—13, Switzerland—13, Ireland—9, USA—8, Australia—7, Norway—6, The Netherlands—5, New Zealand—4, Austria—3, Italy—3, Canada—2, Hungary—2, Slovakia—2, Spain—2, Denmark—1, Portugal—1, and Singapore—1.

How volunteers learn about EHS

All of the self-declared EHS persons responding to the inquiry stated that they first got health symptoms that the healthcare professionals were unable to diagnose. As the quality of living was affected by the symptoms, it led the persons to search for information on the internet, to inquire with friends, or to inquire with health-oriented groups on various social media platforms. All 142 participants claimed to be unaware of the EHS before they developed the unexplained health problems.

What radiation-emitters were considered as causing the symptoms of EHS

The six most commonly listed radiation-emitting devices causing EHS symptoms were: wi-fi, mobile phones, smart meters, telecommunication masts (base stations), bluetooth devices, and digital enhanced cordless telecommunications (DECT) phones. Numerous other radiation-emitting devices were less commonly claimed to have caused EHS, such as landline phones, personal computers, laptops, television (TV) sets, computer monitors (flat or tube screens), home electrical wiring, electric sockets, fluorescent lights, artificial lights, energy-saving lamps, kitchen exhaust fan, induction stoves and cookers, microwave ovens, refrigerators, freezers, boilers, laundry dryers, hair dryers and straighteners, washing machines, home electric ventilation systems, electric guitars, microphones, loudspeakers, electric clock-radios, cameras connected to wi-fi, working battery chargers, electric toothbrushes. Some self-declared EHS persons complained about radiation emitted by car electronics in general, car global positioning system (GPS), car tire sensors, or car heating/air conditioning (AC). Outdoor exposures claimed to cause EHS symptoms, were: powerlines (both before and after removing tooth amalgams), working windmills, solar panels, wi-fi enabled street lamps, electric fences, transformer stations, 5G satellites, and natural solar flares.

Symptoms of EHS experienced by the volunteers

A broad variety of individual symptoms of EHS were mentioned by questionnaire responders (Table 1). Some of the self-declared EHS persons claimed to suffer, in addition to EHS, from multiple chemical sensitivity (MCS) or Lyme disease. Some persons complained of undefined symptoms of: “weak” thyroid, “general impaired immunity” or “feeling developing inflammation” as a consequence of exposure to radiation.

Timing of symptoms occurrence after exposure

The rapidity of development of EHS symptoms in response to exposure to wireless radiation varied among the responders. Claims that symptoms occurred immediately, within 0–30 min, of exposure were presented by 42 (29.6%) persons. Symptoms occurring with a delay of a few hours after exposure were claimed by 25 (17.6%) persons. Symptoms occurring sometimes immediately and sometimes with a delay were claimed by 68 (47.9%) persons. Seven (4.9%) persons did not provide the answer to this question. A very common statement from the EHS persons was that the exposure does not work like an instantaneous on/off switch for the symptoms. This statement was often used by self-declared EHS persons as a justification for why the provocation tests examining sensitivity to wireless radiation exposures did not find a correlation between EHS symptoms and wireless radiation exposures—reactions of volunteers to exposures in laboratory conditions did not switch on/off as it was expected/anticipated by the scientists.

Factors and circumstances affecting occurrence of symptoms

There was a very long and diverse list of circumstances that were considered by the 88 self-declared EHS persons as influencing the occurrence of EHS symptoms. Fifty-four out of 142 responders (38%) did not observe any factors that would strengthen, or weaken, the occurrence and the severity of EHS symptoms. The 88 (62%) persons mentioned one, or several, factors strengthening or weakening the occurrence and the severity of EHS symptoms. The factors that affected symptoms experienced by the self-declared EHS persons are listed in Table 2. In addition, there was a complaint that the proximity to furniture/furnishings containing metal parts or proximity to mirrors and reflective surfaces worsened the EHS symptoms. Also, there was mention that a combination of exposure to wireless radiation devices and everyday psychological stress caused by family problems had a potentiating effect on the EHS symptoms.

Mitigation of the burden of EHS symptoms self-developed by EHS persons

Based on their own health problem experiences, self-declared EHS persons spoke of the ways to mitigate the burden of EHS symptoms. The most common was avoidance of exposures by not using smart devices, not having smart devices at home, avoiding places with known high saturation of wireless communication devices and antennas e.g., shopping malls, and avoidance of close proximity to persons/groups using wireless communication devices. In a few extreme cases, some had completely switched off electricity at home during times when electric appliances were not in use. However, avoidance was not always a solution for EHS sufferers because either the person misdiagnosed the cause of the symptoms or because the surrounding environment was saturated with wireless devices to such a degree that avoidance by switching off own devices had no effect. Another common way of coping with health problems perceived to be caused by exposure was to have lots of outdoor activity like forest walks, often barefoot for enhanced grounding, jogging, or swimming. However, some avoided outdoor activities to prevent exposure to radiation from base stations and radiation emitted by devices in a city setting. Other reasons to avoid outdoor activities were because for some the change of seasons, high pollen, and high UV worsened EHS symptoms (for some the opposite was reported). Avoidance of flu infections or mold was considered by many as a helpful way to lessen the occurrence and severity of EHS symptoms. For those who could afford it financially, relocating and/or radiation-shielding the old/new home was the way forward. However, in some cases, even extensive renovations of new homes and the introduction of a variety of radiation-shielding means did not lessen the EHS symptoms. Avoidance of exposure by using radiation-blocking clothing, window curtains, bed canopies, and wall paints was popular among the self-declared EHS persons. Some EHS persons were also shielding car windows. However, such protection was sometimes very costly. Some persons informed of spending in a range of thousands of euros (someone even close to 10,000 euros) for the protection of the house and body. Besides avoidance of exposures some made dietary modifications. A variety of diets and dietary supplements was used by many but the effects were very individual and not necessarily assured. Some people avoided eating meats and followed vegan or organic diets. Some people ate lots of fruits whereas others, on the contrary, avoided fruits, especially citrus fruits. Gluten and/or carbohydrate avoidance was frequent. Often sugar has been considered to potentiate the severity of the EHS symptoms. There were also those taking dihydroxyphenylpropionic acid (DHPPA), a gut-flora friendly probiotic.

Besides avoidance and dietary means, there were also attempts to control the presumed EHS symptoms with gadgets, promoted and sold on the internet. There were claims that keeping at home shungite, orgonite, or plasterite (a form of orgonite) or lamps made of them helped to mitigate symptoms of ill health. These stones are sold on the internet with scientifically unproven claims they counteract the effects of electromagnetic waves. In some cases, EHS persons used large amounts of e.g., shungite, placed in different locations at home, by the windows, by the electric wiring, and by the electric appliances. Another scientifically questionable way of protection from the effects of wireless radiation exposure was pendants and other kinds of jewelry made of these allegedly wireless radiation-protective stones. However, some used and subsequently considered shungite as of no help for any of the symptoms or causes of symptoms. There were also those claiming to get help from the ‘Prayers to Creation’ and/or from Chakra Chanting. Finally, there were also those who pessimistically thought that nothing helped to cure or alleviate their ill health symptoms. Some stated that despite using some forms of avoidance or protection from wireless radiation they feel in a poor state of health all of the time, with no exceptions.

Medical testing for EHS

Out of the 142 submitted questionnaires, only 62 (43.7%) were from persons whose self-diagnosis of EHS was claimed to be made by the physician or healthcare professional. Only in 37 cases out of these 62 cases, medical tests were performed and advice for the treatment of EHS symptoms was provided. In 12 cases the diagnosis was based solely on the verbally presented description of symptoms by the self-declared EHS person with no medical tests and the patient was provided with advice on how to deal with the EHS symptoms. In 13 cases, examinations with a variety of medical tests were performed but no advice on how to deal with the EHS symptoms was provided.

A very broad variety of tests were used to examine self-declared EHS persons by general physicians or environmental physicians or, in some cases, a kinesiologist, an acupuncturist, or a nutritionist. Thirteen of the self-declared EHS persons were examined with a test protocol developed and propagated by Belpomme et al. (14-16). The test protocol consisted of examining: blood levels of vitamin D3, histamine, immunoglobulin E (IgE) antibodies, antibodies for stress proteins heat shock protein 27 (Hsp27) and heat shock protein 70 (Hsp70), antibodies for O-myelin, levels of S100B protein, nitrotyrosine (NTT), and urinary melatonin. Besides blood tests, patients were examined with an encephaloscan, known also as ultrasonic cerebral tomosphygmography (17) to measure their blood flow in the brain. Encephaloscan examinations were used to claim that severely reduced blood flow is a marker of EHS. In tests performed according to Belpomme-protocol, findings of insufficient oxygen in the brain and elevated blood markers were considered indicators of EHS.

The physicians, who did not follow the Belpomme-protocol, often prescribed a full blood test, and measurements of C-reactive protein (CRP), creatine, aspartate aminotransferase test, nuclear antibodies, and extractable nuclear antigen (ENA) antibodies substances [autoantibody test because symptoms reminded systemic lupus erythematosus (SLE)]. Blood tests used by the general physicians examined blood cells count, CRP, IgE, glucose, hemoglobin A1C (HBA1C), AC protein P0 (myelin), protein S100 A1+B, histamine, NTT, vitamin D, glutathione reduced and oxidized, neurotransmitters, 8-hydroxy-2'-deoxyguanosine (8-OHdG), malondialdehyde (MDA), cytokine panel, full blood examination (FBE), Ca++, Mg++, vitamin D, vitamin B12, folate, IgE, histamine, serum copper, plasma zinc, Epstein-Barr virus (EBV), cytomegalovirus (CMV). Blood tests have shown some elevated and some low levels of some parameters (Table 3). Also, the rouleaux, aggregation of red blood cells visible in dark field microscopy, was tested because rouleaux are known to be associated with several pathologies such as e.g., infections, cancer, or overly high protein concentration in blood plasma. Also, there are claims that rouleaux might be caused by electromagnetic fields (EMF) exposures and it could serve as an indicator of EHS. Additionally, some of the EHS persons were found to be positive for candida, mold tests, and Lyme disease because of the similarity of symptoms.

In some patients, the sensitivity of blood lymphocytes to heavy metals was examined and the sensitivities to chromium, nickel, inorganic and organic mercury, bisphenol A, tin, phthalates, vanadium, metabisulphite, and nitrosamine were observed. No changes in lymphocyte sensitivity were detected for titanium, aluminum, benzoate, cadmium, benzoquinone, fungisterol, lead, salicylate, and polybrominated biphenyls (fire retardants in plastics).

In some persons reduced naturally occurring detoxification performance was detected. Tests for toxins have shown that in some persons heavy metals load indicated extreme stress and lowered ability to retain minerals. It was considered as likely that heavy metals were retained in the organs/bones (indicated by a naturopath exam). Some persons were tested for heavy metal load in urine-stool-blood (Table 4). In some cases, urine tests showed high pyrroles indicating a possibility of a pyrrole disorder, a clinical condition that might cause dramatic shifts in mood. It sometimes occurs alongside other mental health conditions. In some self-declared persons, some elements were examined (classification as described by EHS persons) with mostly inconclusive results. It was also common that dental amalgam checks were performed on EHS patients and dental amalgam fillings were removed either at the suggestion of the medical professional or as a precaution taken by the self-declared EHS person.

A variety of clinical tests for a variety of possible/suspected ailments were performed on various EHS patients but without clear outcomes for the diagnosis of EHS: cerebral arterial imaging (ultrasound), thyroid function exam, the intestine exam for disturbed microbiome (in person with severe diarrhea), exam of liver function, exam of renal function, ear test, mineral analysis of hair, active skin potential, skin exam (skin prick test) was performed due to hives, cervical X-ray, colonoscopy, tests for allergies to heavy metals (e.g., nickel and palladium), electrocardiogram (ECG), electroencephalogram (EEG), magnetic resonance imaging (MRI), electro-acupuncture test, and a so-called bioenergy test that was developed by NES Health Energy for Life Company.

For all of the above-shown tests performed on self-declared EHS persons, it is not known whether wireless radiation exposures have any impact at all. There were only two cases where wireless radiation exposure experienced by the self-declared EHS person in the doctor’s office appeared to affect the outcome of testing. In one case, an exposure-related skin rash or burning red face was observed in the doctor’s office and it was determined that wi-fi might be the cause of the skin reaction because switching off the wi-fi prevented skin symptoms. In the other case, heart scans and heart rate variability (HRV) tests were performed. The rythmogram, depicting the time gaps (intervals in milliseconds) between successive heartbeats, showed a stress reaction from the exposure to a personal computer and DECT phone. However, these tests were insufficiently controlled to provide anything more than an anecdotal evidence of an EMF-induced effect.

Advice and medications given to EHS persons by medical professionals

The most common advice given by physicians was to avoid/limit exposures to radiation-emitting devices known by the patient to affect well-being. This advice was given also by physicians who were skeptical about the existence of the EHS. Some physicians blamed life stress and a person’s attitudes for the occurrence of the symptoms considered to be EHS caused by exposure to wireless radiation. Commonly, medical professionals advise avoidance of stressful situations, and following a healthy diet with a balanced consumption of various products. In some cases, a low-carbohydrate diet or an organic diet was suggested. For stress-related sleep problems, melatonin was advised.

Physicians have also prescribed numerous dietary supplements considered beneficial for health. These were e.g., magnesium, magnesium malate, magnesium citrate, glutathione, vitamins B, B6, B12, B12 aguettant, B complex, C, D, D3, omega 3, selenium, and zinc. Vitamins were either prescribed as tablets or, in some cases, as intravenous injections. In one particular case, the prescribed mixture of supplements resembled the supplements used for the treatment of the genetic mutation to methylenetetrahydrofolate reductase (MTHFR supplements: methyl-B12, methyl-folate, trimethylglycine, N-acetylcysteine, riboflavin, curcumin, fish oil, vitamins C, D, E, and probiotics). The mutation may lead to high levels of homocysteine in the blood and low levels of folate and other vitamins.

Uncontrolled inflammation processes happening in the body were also considered by some physicians as a possible cause of ill health symptoms experienced by self-declared EHS persons. Hence, patients received advice to regulate the inflammation either by a special anti-inflammatory diet or by medications such as e.g., calcium channel blockers, corticosteroids, and anti-oxidants. Detoxification and hydration of the body were also advised, either with chelation therapy to remove heavy metals or by sweating. In some cases, it was suggested to filter the drinking tap water to remove possible heavy metal contaminants coming from the plumbing. Commonly a healthy lifestyle was advised, with lots of activities outdoors in the fresh air, long walks, and not overly strenuous exercise regimens, including advice about walking barefoot on grass.

Because symptoms of EHS are very unspecific, some doctors recognized some symptoms as those known also for other ailments and have suggested treatments for these medically established ailments/diseases. The most common was prescribing various antihistamine drugs. Also, there was proposed therapy for leaky gut syndrome/disease or even for Lyme disease.

Numerous pieces of advice had/might have had a severe impact on patient’s lives, including economic and family personal relations. Some of the advice was ethically questionable, e.g., providing information on where to buy protective stuff or advising to work remotely as it automatically requires the use of wireless radiation-emitting devices. These severely-impacting-life pieces of advice were:

• Protect your home and yourself from radiation with e.g., wall paint and fabrics and use radiation-shielding clothing.
• Buy protection stuff where a list of websites to make purchases was given.
• Relocate because of the radiation sources located close by.
• Relocate to nature/rural area.
• Stop working if you feel bad at work or start working remotely.
• Stop using a cell phone.
• Remove amalgams.

There was also some advice from homeopathy, naturopathy, and/or holistic medicine practitioners who prescribed natural or herbal medicines. These medicines, never scientifically demonstrated to affect in any way EHS, were to medicate symptoms experienced by self-declared EHS persons (Table 5).

There were also comments from EHS patients, both positive as well as negative, about the doctors’ knowledge about EHS and the doctors’ attitudes towards the EHS persons. Some of the examples:

• The doctor believed the patient’s story which the patient considered a positive attitude.
• The patient was uncertain whether the doctor truly believed that wireless radiation causes EHS symptoms.
• The doctor suggested moving to the Amish country (likely a sarcasm).
• The doctor dismissed outright claims that EMF exposures could cause EHS referring to the position of the WHO.

Discussion

Currently, EHS is not recognized medically as a disease and has no formal clinical diagnostic criteria. There have been published a number of studies showing potentially useful tests for the diagnosis of EHS. However, most of these tests were done in vitro or in animals, results of these studies were not sufficiently replicated and, most importantly, were not developed into and confirmed as robust clinical tests for diagnosis of EHS (14-23). However, from reading posts on social media and from discussions with EHS persons whom I met at my lectures or who have contacted me directly, I learned that while the majority of self-declared EHS persons are self-diagnosed there is a group of EHS persons claiming to be diagnosed by a physician or other medical professional. Therefore, it is of general scientific interest to find out what criteria and tests were used by the physicians who diagnosed EHS and, in some cases, issued even EHS certificates. The idea was that by inquiring among the so-called ‘physician diagnosed’ EHS persons it might be possible to compile a list of tests and criteria used by the diagnosing physicians with the idea in mind: ‘let us check what doctors do and on this basis let us formulate a hypothesis for testing diagnostic criteria for EHS’. This knowledge that is not openly and freely available in scientific literature might aid us in developing hypotheses to discover diagnostic criteria for EHS.

A set of questions was posted on the personal science blog site in April 2022 and EHS persons were asked to provide confidential answers. The posting, containing questionnaires in 7 languages, was read by 1,760 individual viewers. The questionnaires have been downloaded a total of 1,253 times. However, only 142 answered questionnaires were submitted for this study which is 11.3% of all downloaded questionnaires. Furthermore, even though the project called for responses from physician-diagnosed EHS persons, of the 142 submitted questionnaires, only 62 persons (43.7%) had a physician’s diagnosis.

The reasons for this low turnout might be several. Firstly, it is likely that the questionnaires were downloaded not only by the persons interested in participating in the study but also by persons just curious about the study. Secondly, questionnaires were downloaded not only by the so-called physician-diagnosed EHS persons but also by other self-declared EHS persons. Thirdly, the submission of answered questionnaires might have been, and in fact it was, hampered by the actions of some ‘EHS activist influencers’ in their posts on social media. After posting questionnaires, I was made aware that on social media (in one particular case on Facebook) was posted a message warning the physician-diagnosed EHS persons to not participate in the project and to not provide information. The reason was that the name of the physician might be leaked by the project scientist and physicians might face administrative consequences for their unapproved diagnoses of EHS. Such comments disseminated on social media have likely deterred physician-diagnosed EHS persons from participating in the project.

Stories about EHS in mainstream news and social media likely had an impact on the self-declared EHS persons since before falling ill they did not abstain from modern communication devices. They all lived regular lives within a society that was saturated with telecommunication technologies and, therefore, had access to news stories disseminated via electronic media. Only after they self-declared themselves and EHS they begin to avoid electronic devices, including computers and smartphones, which might have limited their access to news media on smart devices. Also, the problem of EHS is not a new one but it has been known and debated since the 1990s (18,19). Therefore, it is likely that many participants, even all, were to some degree aware of EHS’s existence even if they claimed to be unaware of EHS because they did not consider themselves to be EHS yet. It is then likely that only once they have developed symptoms that medical professionals were unable to diagnose or medicate they have begun to more seriously consider wireless radiation exposures as a potential source of their health problem. Therefore, the claims that persons were completely unaware of EHS before they developed symptoms might be imprecise. Rather, they did not take EMF exposures as any serious health-affecting factor before they started to search for the possible cause of their ill health.

The list of wireless radiation-emitting devices that were considered to cause EHS is long and, besides wireless communication devices and networks, emitting wireless radiation, it includes also a long list of household devices and modern car electronics, emitting extremely low-frequency electromagnetic fields (ELF-EMF). The radiation emitted by these devices was claimed to cause a long list of 72 different individual symptoms. Every EHS person listed several symptoms that were suspected to be caused by EMF exposures. These symptoms were not of a particular specificity and the same symptoms could have been caused also by other, non-EMF, stimuli. Furthermore, each person appeared to list all ill health symptoms that he/she experienced and there is no way to determine whether all symptoms were indeed associated with EMF exposures or whether some of them occurred concurrently but were not caused by EMF exposures. This notion is supported by the reported e.g., pollen allergies, SLE, and chemical sensitivities by the EHS persons, and symptoms associated with these ailments were reported together with all other symptoms. Therefore, the list of symptoms might include symptoms caused by EMF exposures and symptoms not caused by EMF exposures. It might be very difficult for a self-declared EHS person to separate EMF- and non-EMF-caused symptoms. However, this might cause problems in the diagnosis of EHS when a physician is not presented with the list of symptoms caused solely by EMF exposures but by the list of all symptoms of a person with ailing health. The reason for such reporting of symptoms and for the inability to clearly separate EMF-caused symptoms from all other symptoms is that the knowledge and experience of symptoms are anecdotal, not based on controlled experiments and observed correlation does not automatically confirm causation. Symptoms of EHS are always real (24) but the anecdotal evidence gathered by the EHS persons in uncontrolled ‘experiments’ is insufficient to claim that certain symptom is indeed caused by EMF exposure. For this is necessary to experiment with proper controls to exclude erroneous associations. The list of symptoms reported here overlaps partly with the list of symptoms listed in the recent review of EHS studies (11). These symptoms lack precise definitions making them prone to individual interpretation by the self-declared EHS persons. These long lists of symptoms also show how unspecific the symptoms are and how very subjective the data collected this way is.

A piece of important information for further research planning is whether symptoms occur during exposure or immediately after or whether the occurrence is delayed. In 110 volunteers, symptoms of EHS occurred immediately, within 0–30 min of exposure, and in 93 volunteers, symptoms occurred with a delay. This occurrence of immediate/delayed symptoms might have a significant impact on the outcomes of the provocation studies where the responses of the exposed volunteers were recorded during and immediately after the EMF exposure. It poses two questions concerning to-date executed provocation studies. The first question, if in numerous EHS volunteers symptoms of EHS occur immediately during or after exposure then it is puzzling that EMF sensitivity was not detected in the provocation studies. Unless, fast reacting to EMF exposure EHS persons were hesitant to participate in experiments that might be harmful to their health. The second question, because the to-date performed provocation studies examined only whether exposures cause immediate effects, these studies were by design unable to detect EHS symptoms in numerous persons claiming their symptoms occur with a several hours delay after exposure.

Out of 142 participants, 88 (62%) claimed that a variety of external/internal factors affect the occurrence and severity of EHS symptoms. The most frequent were mentioned weather-related factors, but there were also factors related to diet, medication, health status, and physical and mental stress. All of these factors might influence the outcome of provocation studies. While in the past researchers performing provocation studies considered the general health status of the volunteers they did not consider e.g., weather conditions. Thus, it might be worth considering when planning future studies to take into account the potential seasonal impact on EMF sensitivity. The potential impact of mental stress seems to be unavoidable. The involvement of physicians specialized in mental stress could provide meaningful help to alleviate such mental stress and worry. For any volunteer, coming to the laboratory or scientists visiting at home, it is a stressful situation. As it has been suggested (11), mental stress might affect the outcome of the provocation experiment (via placebo and nocebo phenomenon) and volunteers might experience some of the EHS symptoms not only when exposed to EMF but also without being exposed to EMF which skews the results of the provocation experiment. Interestingly, 38% of the volunteers did not realize that any external/internal factors would affect their response to EMF exposure. This might suggest that either these persons are indeed unaffected by additional factors or that these persons did not self-examine sufficiently well or it was difficult to pinpoint response potentiating/diminishing factors from the large variety of factors that every person is exposed to in daily life.

Of the 62 physician-diagnosed EHS persons, 12 persons’ diagnoses relied solely on the story presented by the volunteer. In 13 persons a variety of medical tests was performed but no treatment for EHS was prescribed. In 37 persons a variety of tests was performed and medical advice for the treatment of EHS symptoms/causes was prescribed. Of these 37 persons who were tested and got medical advice, 13 were tested for a set of parameters, developed by Belpomme et al., which claimed it to be specific for the detection and diagnosis of EHS (14-16).

In general, without any specific target set on EMF effects, the tests primarily examined blood biochemistry and the content of heavy metals. Physicians simply followed the symptoms presented by volunteers and looked for very general health markers. There were no attempts to determine whether any of the health parameters were affected by exposure to EMF. Only in two cases, the effect of EMF was observed but it was a rather unplanned by-product of testing. Physicians themselves often admitted that they do not know of EHS and they do not know of any testing protocol that could be used to detect it. The outcomes of the tests did not indicate that the tested parameters would behave in EHS persons differently from the rest of the population. Therefore, tests were performed to examine the general health status of a person and not specifically to detect EHS.

Belpomme et al. (14), using the biochemical approach, suggested several possible markers of EHS. The validity of these observations is, however, doubtful because of design and reporting problems in the published studies. Data was collected from 1,216 self-declared EHS, but only 727 cases were included in the published study (14). The data from the 489 EHS cases were excluded because of the poorly specified criteria, including claims of some pathologies discovered after enrollment in the study. The cohort of self-declared EHS came from Europe (countries unspecified), the USA, Canada, Australia, Russia, China, the Middle East (countries unspecified), and Africa (countries unspecified). In the published study, it was not explained how the samples were collected, stored, and transported to prevent decay, or how the samples were analyzed.

Furthermore, it is not explained how the cohort’s females (495 persons) and males (232 persons) were selected. Therefore, the claim of Belpomme et al. that women are more susceptible to developing EHS might be incorrect, potentially caused by selection bias as women more easily contact physicians than men. The claim that women are easier to develop EHS is not proven.

Patients’ health was analyzed using several tests. There was a lack of information that would ensure the reliability of sample collection and analysis, especially in the context of the broad geographical spread of the cohort. The tests analyzed levels of the following markers: high-sensitivity C-reactive protein (hs-CRP), vitamin D2–D3, histamine, IgE, protein S100B, NTT, Hsp70, Hsp27, anti-O-myelin autoantibodies, hydroxy-melatonin sulfate (6-OHMS), and 6-OHMS/creatinine. Additionally, patients’ blood flow in the temporal lobes was examined, and the pulsometric (pulsatility) index (PI) was determined using a non-invasive ultrasonic tomosphygmography (17,25-28).

The changes in biochemical markers were found in small sub-groups of self-declared as EHS, MCS, or EHS + MCS. Changes of the markers occurred only in a small percentage of examined EHS persons. Hs-CRP increased in 15%, vitamin D2–D3 declined in 23.2%, histamine increased in 40%, IgE increased in 22%, protein S100B increased in 15.5%, NTT increased in 29%, Hsp27, Hsp70 detected in 7–19%, antibody to O-myelin detected in 17–29%, melatonin to creatinine ratio declined in EHS but the variation was too large to provide a specific number. Pulsatility declined in 50.5% of EHS, but the actual pulsatility data was not shown (sic!).

Importantly, Belpomme et al. (15) did not show whether any of the EHS persons had simultaneous changes in several, or even all, of the markers. Therefore, the claim that histamine is a key pathogenic mediator of EHS, because it increased in 40% of EHS cases, was not proven.

Most importantly, the study by Belpomme et al. (14) lacked any experimental evidence that changes in examined markers were induced or modulated by EMF exposures. The EHS status of the patients was based solely on the claim of the self-declared EHS persons that symptoms are caused by EMF exposures. Belpomme et al. in their published studies (14-16) did not examine the effects of EMF exposures but relied fully on the self-diagnosis of patients. Thus, there was no evidence that the examined markers relate to EMF exposures.

Furthermore, the following claim of PI as a marker of EHS (15) is not supported by the evidence: “In a previous study we showed that EHS and/or MCS bearing patients may present with a significant decrease in mean PI in several tissue areas of temporal lobes, suggesting these abnormalities may correspond to some decrease in brain blood flow (BBF) and/or neuronal dysfunction.”

The mentioned “previous study”, is referring to the 2015 study (14) where the authors did not show the aforementioned pulsatility data (emphasis added to the quotation): “We thus measured the BBF-related pulsatility in the patient hemispheres by using echodoppler of the middle cerebral artery, and found that resistance index and systolic and diastolic velocity indexes were associated with cerebral hypoperfusion in one or the two hemisphere in 50.5% of the cases, whatever the patient group considered (data not shown).”

Finally, there is the following, unsupported by any evidence statement (15): “Reproducibility of symptoms each time the patient claims to be exposed to EMFs; regression or disappearance of clinical symptoms claimed by the patient to be associated with EMF avoidance”.

There is no evidence of such reproducibility of symptoms upon exposure in any of the studies published by Belpomme et al. (14-16).

The claims that biomarkers proposed by Belpomme et al. can be used as diagnostic markers for EHS are not supported at all by the evidence presented in Belpomme et al. studies (14-16). It is not known what kind of ailment or ailments Belpomme et al. were examining because the only evidence suggesting that EMF exposures were the cause of the observed/experienced symptoms were opinions of self-declared EHS persons. There is no evidence whether these opinions of self-declared EHS persons were correct or were a mistake. However, there were comments from EHS persons that the costs for the tests prescribed by Belpomme were very high (29), especially when some EHS persons needed a repeat of the testing. Therefore, test results reported by the 13 EHS patients cannot be used as proof of their EHS. These results certainly indicate some kind of physiological stress but there is no evidence that this physiological stress was caused or is modulated by EMF exposures. Expression of these biochemical markers might have been caused by EMF exposures but equally, it might have been caused by other stimuli. Belpomme et al. published evidence that does not prove that EMF played a role.

Some of the physicians provided some medication and advice on how to cope with EHS symptoms. Medical advice was provided by 12 physicians who did not perform any tests and by 37 physicians who performed some tests. There is an overlap between what medical advice doctors provide and what self-treatment of EHS symptoms was self-developed by self-declared EHS persons. One of the reasons for these similarities might be that EHS patients shared information on social media and persons considering themselves as EHS tried these to get some relief from EHS symptoms. Another reason for these similarities might be that physicians, largely unaware of what EHS is and not having any advice from the medical community, tried to provide relief by suggesting various general health improvements in living habits and supplementation of diet as well as detoxification of the body from heavy metals. Such treatments, if not helpful for relieving EHS, were not aggravating the symptoms experienced by EHS persons. Interestingly, there were no praises from EHS persons for the effects of medications advised/prescribed by physicians. On the other hand, there were numerous complaints about the prohibitive costs of supplements and some of the EHS persons did not use prescribed medications because they could not afford them.

Finally, this pilot study has weaknesses that prevent it from drawing far-reaching conclusions. Two of the weaknesses are common for all to-date executed EHS studies. There are a small number of volunteers willing to participate in the study and a lack of assurances that the self-declared EHS diagnosis is correct and that the person claiming to suffer from exposure to electromagnetic fields made a correct determination of the source of the health problem. Other weaknesses, specific to this study, are that only a small proportion of participants had medical diagnoses, there is no control over the quality of the information provided by participants, and there was no way to ensure that the same person has not participated in the study more than one time.

Conclusions

Individual sensitivity of people to all kinds of environmental factors, natural and man-made, is common and, therefore, it is logical to consider that also individual sensitivity to man-made EMF exists, even if we still rely on anecdotal evidence from self-declared EHS persons and do not have sufficiently robust scientific proof of it.

Trust in each other is of paramount importance in such a type of survey study. Volunteers need to trust that the information they provide will be kept private and analyzed without bias. Scientists need to trust that volunteers provide honest and not exaggerated responses to all of the questions. Without such trust execution and analysis of such survey studies is very difficult.

The observations collected in this pilot questionnaire survey study show that currently, it is not possible to medically diagnose EHS as being a result of low-level wireless radiation exposures. It is possible that further development of the questionnaire might increase the likelihood of correct identification of EHS persons but, for the final confirmation of the EHS status, some physiological tests might be necessary. Currently, the medical diagnoses of EHS, claimed by some of the EHS persons, are based solely on the anecdotal evidence presented by the EHS person and, in rare cases, on tests that lack scientific proof of their validity as EHS diagnostic tools.

Further research on the causes of EHS and on the development of methods to diagnose it is necessary. However, it is necessary to keep in mind that the biomarkers of EHS might, or will likely, overlap with markers for other IEI-sensitivities or allergies. Future research studies should concomitantly examine both, physiological (12) and cognitive (30,31) responses of the human body to exposures to electromagnetic fields.

Acknowledgments

None.

Footnote

Peer Review File: Available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-25-4/prf

Funding: This study was supported by personal scientific research grant #005032022T from The Finnish Electrosensitivity Foundation, Helsinki, Finland.

Conflicts of Interest: The author has completed the ICMJE uniform disclosure form (available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-25-4/coif). The author was supported by a personal research grant #005032022T, by two travel grants for participation in conferences ARPS2023, and ARPS2024 in Australia and by two personal research grants to prepare presentations for the ARPS2023 and ARPS2024 conferences. All support was received from the Finnish Electrosensitivity Foundation, Helsinki, Finland. The author has no other conflicts of interest to declare.

Ethical Statement: The author is accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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