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Brain on fire: Living with electromagnetic hypersensitivity

4 settembre 2015 – “stuff.co.nz – well&good”, by Mark White

IT specialist Steve Weller describes the pain of EMS as like "a tight-fitting hat being pulled down on your head".
IT specialist Steve Weller describes the pain of EMS as like “a tight-fitting hat being pulled down on your head”.

Hellish headaches are just the start for people with electromagnetic hypersensitivity – and in our wi-fi world, there’s almost nowhere to hide.

After an hour of measuring radio-frequency levels around Benalla, the north-eastern Victorian city of 9300 deep in Ned Kelly country, Australia, Bruce Evans puts down his smartphone-sized digital meter.

He says he wants to demonstrate how badly cordless phones leak radiation, and there’s one in the Benalla bookshop he can test. He strides off with intent on a sunny Sunday morning, a burly man with a shaved head, like a friendly bouncer you nonetheless wouldn’t want to mess with.

EHS sufferer Bruce Evans.
EHS sufferer Bruce Evans.

Evans, a 50-year-old web designer and former Australian Army commando, is showing me where he can go without falling ill. He says he has a controversial condition known as electromagnetic hypersensitivity (EHS), triggered by electromagnetic fields (EMF) emitted by power lines, devices such as smartphones and laptops, by wireless routers and towers pumping out telco and NBN signals – the building blocks of the modern economy; indeed, of modern living as we know it.

Symptoms range from a mild headache through to tingles, tinnitus and heart palpitations to incapacitating migraines, fatigue and nausea. Being EHS puts a huge mental strain on sufferers, both from their symptoms and from not being believed.

EHS is contentious because the radio-frequency levels at which sufferers say they’re affected fall well below those considered dangerous by regulators. And its existence is denied by mainstream medicine. While allergies can be tested with a needle-prick blood sample, there is no accepted diagnostic test for EHS, so most sufferers are self-diagnosed. “The collection of symptoms,” says a World Health Organisation (WHO) fact sheet, “is not part of any recognised syndrome.”

Theo R, who has moved to an isolated property with his partner Irma.
Theo R, who has moved to an isolated property with his partner Irma.

We enter the bookshop. Evans doesn’t recognise the young woman behind the counter. He reaches into his backpack and removes his meter. “I was wondering if I could just measure the telephone?” he asks.

“Hi,” I add. “I’m from Good Weekend magazine, we’re doing a story about – ” I fumble briefly ” – how some electrical items leak electricity … ”

The woman freezes. “I’m sorry,” she finally says. “If I had some proof of who you are … ”

Signs outside Theo and Irma's home.
Signs outside Theo and Irma’s home.

We leave without the measurement but with a glimpse into Evans’ world. “She was probably looking for the big red button under the counter to call the Men in Black,” he jokes.

Sufferers of EHS say they are environmental refugees in their own country, moving to other cities or suburbs or retreating to remote rural hideaways to escape their symptoms. I spoke to a dozen sufferers, some of whom coat their houses in paint that reflects electromagnetic radiation (EMR), fit wire mesh over their windows, or wear protective caps made of cotton-metal-blend fabric. Shielding items cost dearly: one online business lists a five-litre pot of paint for NZ$550 and a protective iPhone 6 case for NZ$60. “The number of people contacting us with EMR-related problems is absolutely growing,” says EMR Australia director Lyn McLean.

Steve Weller, a 46-year-old IT specialist, moved his family from Melbourne to Brisbane because of EHS, but continues to search for a “haven”. He describes his symptoms as akin to “a tight-fitting hat being pulled down on your head, often accompanied by a pricking feeling over the scalp”.

Bruce Evans with his smartphone-sized digital meter.
Bruce Evans with his smartphone-sized digital meter.

Wendy McClelland, 57, has been on a government disability pension since 2003 because of her EHS symptoms. She covers her face with a shielding cloth and sunglasses when she drives into Ballarat from her isolated property in country Victoria – and has been abused at traffic lights because people think she’s Muslim.

Bruce Evans has a vision for sufferers of EHS. He wants to build a community in an area of low EMF emissions, known as a White Zone, where victims can live and thrive together. There are a handful globally, largely in northern Europe and the US. Evans’ community could take root at his dad’s farm at Myrrhee, in north-east Victoria, on land his family has worked for 150 years. It could then expand through the valley, a dead zone for mobile phone signals … for now, at least.

The WHO insists there’s “no scientific basis” for a link between EMF exposure and EHS, but agrees the symptoms are real. Estimates of EHS’s prevalence vary widely, from one in 30 people to a few in a million.

EHS sufferer Irma.
EHS sufferer Irma.

The Australian Medical Association declined to comment on EHS. Michael Repacholi, the Australian former co-ordinator of the WHO’s Radiation and Environmental Health unit, says studies show “as conclusively as possible” that sufferers’ symptoms are not due to EMF, but could have another explanation. He suggests EHS could be “psychosomatic”.

But sufferers insist their symptoms are real, and caused by EMF. “Cate”, a 43-year-old project manager in health evaluation in Sydney, doesn’t want her name published because she’s worried she’ll be “pigeon-holed by colleagues”. She believes she’s a likely EHS sufferer – it’s the only explanation for five years of severe nausea, muscle weakness, migraines and body tingling.

After she moved from her inner-city unit to outer Sydney, where a friend of hers has measured 16,000 times less EMF exposure, she says her health improved significantly. A nodule on her thyroid, which was set for surgery, stopped growing.

EHS has had some high-profile sufferers, including Gro Harlem Brundtland, a former Norwegian prime minister and WHO director-general, who banned mobile phones in her office as they gave her headaches.

Chuck, a character with EHS in the Breaking Bad spin-off series Better Call Saul, confines himself to his house, which has the electricity disconnected. In one episode he sprints outside for a few seconds, wrapped in a metallic sheet that flaps behind him like Batman’s cape. His vision blurs and a howling noise rings in his ears.

Steve Weller has watched this and says the sounds were added for dramatic effect: “Some people experience tinnitus from exposure events, but not like on the program.” Weller started suffering symptoms – heart palpitations and headaches – when he installed a wireless router in his home in 2001. The symptoms immediately dissipated once he turned the router off. He went on to spend more than NZ$22,000 on shielding his house, which didn’t stop the pain and discomfort coming on when he was outdoors.

In 2013, he finally left Melbourne to escape the compulsory statewide rollout of smart meters to measure electricity use, commonly blamed by Victorian EHS sufferers as provoking symptoms.

The notion of EHS would once have been “rubbish” to Weller. “I was addicted to my smartphone and playing computer games,” he says. Wireless technology gives us so much freedom that people don’t want to accept that it may come with a cost, he adds.

Bruce Evans is gloomily contemplating an NBN tower about to go live at Moyhu, near his favourite burger joint. The north-eastern Victorian town is just over the lip of the valley in which he lives.

Evans moved to a cottage adjoining his dad’s farm in 2012 after five years of deepening health problems in Melbourne. These began when he first used an iPhone. (“Bang! It was like someone had stuck an ice-pick in my head,” he says.) His symptoms intensified in line with the rollout of the 3G mobile network and smart meters.

During Evans’ last two years in Melbourne, he only left his room to buy food. His social life disintegrated and he couldn’t attend business meetings. Years earlier, he’d met a woman with a sensitivity to chemicals who refused to get in a car. “I was like, ‘Pffft, loony’ … I met a couple of other people in similar situations and I just wrote them off as nuts, bloody sensitive little namby-pambies. Then it started happening to me.”

Evans drives up a mountain to show me the valley in which he dreams that dozens of White Zones homes could be built. He stops to read his meter. It’s hundreds of times his safe limit. “Oh f…,” he says, reversing the van, away from the danger zone. Five minutes later, he touches his top of his head. “I’ve got pressure here.”

Evans posted his idea for a community on the web. One line read: “I want this area declared a sanctuary where telcos cannot infringe.”

The post went viral and emails poured in from around Australia and abroad. Theo R, 60, contacted him from a caravan on the Gwydir River, in NSW’s Northern Tablelands, where he was living with his partner, Irma, 55. The couple had moved to the tablelands in 2014, their only guests the occasional fisherman and flocks of native birds. Irma’s EHS is so severe, Theo had to construct an EMF-blocking Faraday cage – pasting heat-reflective foil over their entire mobile home.

Clinical studies have shown that sufferers frequently can’t tell when an EMF source is present; they only have symptoms when they believe one exists. Other studies indicate that the effects of EMF on laboratory animals, plants and human cells are real. These conflicting results are cited by EHS sufferers and sceptics as proof that each side is right.

Professor Rodney Croft, of the Australian Centre for Electromagnetic Bioeffects Research at the University of Wollongong, is keeping an open mind on whether EHS exists, despite his own research casting doubt on the claims of some sufferers, which he is now re-conducting. “My feeling is [their condition] won’t end up being due to radio frequencies, but there is a large number of people with quite serious problems,” he notes. “It’s very real.”

One way to prove EHS is real is with “provocation tests” – introducing and removing frequencies and asking sufferers to match their presence to their symptoms. According to Steve Weller, these tests can’t reliably distinguish genuine EHS victims from those suffering a possible “nocebo” effect (generating adverse symptoms themselves). Weller says that biological tests are a better way of testing for the condition.

Former Sydney University physics lecturer Jim McCaughan agrees. Provocation tests, he argues, “assume the brain is acting as a meter”. He believes that damage from EMF is cumulative.

McCaughan was forced to retire from academia after a sudden EHS onset in 2013, when he felt his brain “rippling” under his skull. “That was scary,” he says. When we meet in a Sydney cafe, he’s wearing a smart cream hat; underneath it are seven skullcaps made of shielding fabric which he says reduces his EMF exposure by 99 per cent. McCaughan speaks with a veteran lecturer’s rational tone. If he wears the shielding, he can function normally – if he doesn’t, he could pay for it later. That’s enough to prove a link, he insists.

The most high-profile official recognition of EHS in Australia occurred in 2013, when the Administrative Appeals Tribunal (AAT) awarded compensation to former CSIRO senior research scientist David McDonald. When he was hired in 1994, he told CSIRO he had EHS and was granted an assistant to help with computer work.

That help was withdrawn in 2006, and he was required to trial electronic equipment. Each time, he suffered nausea, headaches and migraines. Government insurer Comcare argued EHS is not an “ailment” as it has no diagnostic criteria, but the AAT dismissed this and ruled that CSIRO had worsened his EHS symptoms.

By 2009, as his condition worsened, McDonald, now 61, had to move with wife Lynne, 54, from their inner-city Melbourne house to a 40-hectare farm north of the city. They use a low-voltage electricity system, which runs the tiny TV on which he watches his footy team, Hawthorn, play. Going to a game is out of the question and his career is finished. “I’m not whinging about it,” he says. “I’ve just had to restrict my activities a great deal. Not working has been a huge restriction for me.”

His GP Russell Cooper’s diagnosis of EHS in 1992 formed part of the evidence at McDonald’s tribunal. While not commenting on McDonald’s case, Cooper says he sees sufferers react to WiFi in his Tasmanian practice if it is turned on. And he believes he’s identified a way to test for EHS – the first – which is being developed in a Greek laboratory, based on variations in “heat shock protein” genes that help protect people from radiation exposure. “It’s early days yet,” he says.

In the meantime, a grassroots movement is growing across Australia against new mobile or NBN towers. The community-based OREAD Project in Kyogle, NSW, adopted a biological approach to testing EMF effects ahead of a proposed NBN tower in the area. Twelve residents had their blood analysed, and the results were sent to NBN Co., Visionstream and Ericsson by Nimbin solicitor David Spain. If the tower is erected and subsequent blood tests show their health has been compromised, Spain says there could be grounds for an injunction or as a precedent in future planning cases.

If EHS is real, then the implications of more and more WiFi are scary. Lynne McDonald believes her husband could be one of the “coal-mine canaries” for EMF effects.

Bruce Evans enters a two-storey building on his dad’s farm where dormitory accommodation might be sited. The ground floor is a jumble of machinery, creating an obstacle course to the ladder leading upstairs. On the upper level, there are bird droppings on the floor and ripped cladding hanging from the ceiling. Seasonal hops pickers used to bunk here, but not recently.

His dad, John, 76, is outside. He resembles an older version of Bruce and also suffers from EHS. “I gave him an iPhone once and he was a write-off for two days,” says Bruce. “Yeah,” replies his father. What does dad think of having people with EHS here? “We’ve got all these old buildings here not being used for anything. We could have a set-up where people could come.”

The summit of a nearby hill is speckled with blackberry bushes, splats of dung and a few rabbits darting out of sight. Huts could be built here and on the facing slope. John is an irrigation engineer, so they can pump water up the hill. A dam in an adjoining hollow could be a recreation area for fishing. Evans works in the cottage at a kidney-shaped desk, with filters over the computer screens. He’s built a website called Radiation Refuge to match EHS sufferers with suitable accommodation, which had 14 listings in August.

You sense Evans thought his White Zone would be a simple undertaking: declare it open and they will come. But Diane Schou, who lives with about 50 other sufferers at the White Zone of Green Bank, West Virginia, warns there’s a lot to consider. “We are all different,” she says. “Certain frequencies seriously harm some of us, but do not harm others.”

Evans has learned that lesson the hard way, with several sufferers finding it difficult to stay there, and a recent one having problems as soon as she entered the valley. His first visitor, Kaytie Wood, felt the cottage was “not a safe place”. Wood, a 58-year-old energy healer, had an immediate headache as soon as she arrived. Evans turned off various items, including a smart meter housed 70 metres away in a shed. That helped, but over the next day she became steadily worse: her headache grew, she became nauseous and could barely move. “It was like having an all-over-the-body migraine and the power was off there,” says Wood. “It must have been something else.”

Evans convinced his sister – who runs a goat farm over the road – to turn off her electric fences, which helped. Wood camped outdoors the second night. “I think there was a lot of learning for Bruce,” she says. “He discovered we’re sensitive to different things.”

The NBN tower at Moyhu was recently turned on. Evans can’t measure any difference with his meters, but now feels like he has “termites in his head” when he goes for a run up the road.

In July, he discovered a mobile phone tower will be erected – he’s not sure when – on a hill he can see from his office window. His dream of a White Zone seems over. He doesn’t know how he will cope. He’ll have to take to the road and is hoping someone will donate a caravan for him to live in.

Theo R and Irma might have a solution. They moved in May to NSW’s Central West, to an abandoned five-room homestead on 160 hectares, owned by a friend, by the Warrumbungle National Park. Theo repaired the doors and windows and dug a new dunny pit. Irma has regained her energy and is thinking of starting a business. They’re inviting people with EHS to camp there.

“The scenery is second-to-none,” Theo says. “It’s a little miracle.”

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