Shrouded in a thick, white sheet, William looks like a tall child wearing a ghost costume. He lives like a hermit, isolated in a remote cottage in Sweden, and speaks of the pain that prevents him leading a normal life: “It feels like having your head caught in a vice.”
A former master’s student and aspiring musician, he is now in his 40s and has been living this way for more than a decade, his family taking him water and food to keep him alive. William’s story is told in a new documentary, Electric Malady, which tackles the subject of electromagnetic hypersensitivity (EHS) – an alleged sensitivity to electromagnetic fields from the likes of mobile phones, WiFi and other modern technology.
EHS is not a scientifically recognised condition and years of controlled, “double-blind” studies – in which neither the participants nor the researcher knew whether equipment was switched on or off until the end of the trial – have found no evidence that modern technology is the physical cause of the symptoms.
It received increased awareness a few years ago thanks to Breaking Bad spin-off Better Call Saul, which saw Saul’s brother Chuck living as a recluse, often draped in a silver blanket and living by candlelight.
Many experts say it is psychosomatic. The World Health Organisation (WHO) states that EHS is not a medical diagnosis but acknowledges symptoms are real and that it can be “a disabling problem for the affected individual”.
‘We completely rewired the house’
Electric Malady was made by Marie Liden, who was nominated in the outstanding debut category at this year’s BAFTAs for the project. She was inspired to tell William’s story as her mother experienced symptoms for several years.
“I was eight years old when mum got ill,” she says. “We completely rewired the house and we used oil lamps and candles instead of lamps. It was an unusual childhood, but it just became normal.”
She points out that William’s experience is extreme, but says she wanted to tell his story because he “talked so beautifully about the kind of otherness and isolation and loneliness that comes from suffering from something like this”.
Filming, with the tech involved, was always going to be a challenge; Liden used a battery-driven camera, and no lights. “The devices had to be kept outside his house and we used long lenses to stay as far away from him as we could,” she says. “Sometimes after a few hours or a day of filming, we would have to stop and he would spend a whole day recovering.”
A controversial subject
Like William, Liden’s mother believed her EHS started after a mercury filling in her teeth became loose. “She had 19,” Liden says. “It was a long process because every time she took one out, it would get worse.”
The filmmaker says her mother is now well after having the fillings removed. “She uses a mobile phone now – she tries not to hold it against her head or sleep with it next to her bed, or anything like that. But she lives a normal life.”
The British Dental Association says dental amalgam is safe and durable. There is no evidence to suggest exposure has an adverse effect on patient health, says Mick Armstrong, the chair of the organisation’s health and science committee.
Erica Mallery-Blythe, a former A&E doctor who set up the PHIRE (Physicians’ Health Initiative for Radiation and Environment), says that less than 1% of the population would suffer as extremely as William.
“You have a spectrum of less severe cases, but nonetheless very disruptive to life, where they can no longer work, they can no longer live in a normal residential area,” she says.
“Then you have what I would call moderate cases, where they’re quite unwell but still managing to pin down a job, still managing to live at home in a relatively normal environment. And then you have very mild cases; they might be people who, for example, are just getting headaches.”
Warnings to campaigners
In the modern world, it is a subject that needs to be approached with caution. When technology is unavoidable for most people, there is a very real danger of scaremongering.
In 2020, charity Electrosensitivity-UK was warned by the Advertising Standards Agency (ASA) over a poster featuring a headline which posed the question, “How safe is 5G?” and listed a range of what it claimed were health effects such as “reduced male fertility, depression, disturbed sleep and headaches, as well as cancer”.
Banning the ad after assessing WHO and government guidance, the ASA told the charity to ensure they did not make claims implying “robust scientific evidence” of negative human health effects without adequate substantiation.
In 2007, the BBC upheld complaints against an edition of its current affairs programme Panorama, titled Wi-Fi: A Warning Signal, after two viewers said it exaggerated the evidence for concern about the potential health hazards.
‘It is a tragic situation’
Kenneth Foster, a professor of bioengineering at the University of Pennsylvania, who has spent decades studying the impact of radiation, says symptoms of electrosensitivity are real, but no well-controlled studies have shown they are linked to actual exposure.
“[People with EHS symptoms] vociferously resist any suggestion that the symptoms are psychological in nature – although the evidence seems to point in that direction,” he tells Sky News. “It is a tragic situation that has been around for many years. I do not see any easy solution.”
Another radiation expert, Eric van Rongen, says that while there is no scientific proof for EHS, and he believes mental health plays a part for many sufferers, he does not rule out the possibility that there could be people who really are physically sensitive.
Studies have shown awareness of exposure influences complaints, he says. “So there is most certainly a psychosomatic component in the whole issue. But whether that is the explanation for all the problems that people experience, that is not clear. You cannot exclude the possibility that there are people who really are electro-hypersensitive.”
One theory is that the condition is comparable to allergies to peanuts, penicillin, or insect stings, for example.
“There’s still a lot of mysteries in the human body,” Dr Van Rongen says. He concludes by assuring that the world has been exposed to electromagnetic fields for a long time. “It certainly is not a major health issue for the population in general.”
Liden says she feels EHS is “still very controversial and really toxic to talk about” but she was determined to shine a spotlight.
“I’ve seen first-hand the physical reactions, with my mum,” she says. “If we drove under low-hanging electrical wires, she would have a reaction. She would get really sick, flare up in her face and become really nauseous.
“My film is not trying to prove whether this is real or not. It’s looking at the sometimes really extreme situations that people are forced into because they have nowhere to go.”
Electric Malady is out in cinemas now