Refugees of the Modern World
The “electrosensitive” are moving to a cellphone-free town. But is their disease real?
By Joseph Stromberg
Nicols Fox moved to the Radio Quiet Zone to escape electromagnetic forces
Courtesy of Christine Fitzpatrick
You can turn your phone on in Green Bank, W.Va., but you won’t get a trace of a signal. If you hit scan on your car’s radio, it’ll cycle through the dial endlessly, never pausing on a station. This remote mountainous town is inside the U.S. National Radio Quiet Zone, a 13,000–square-mile area where most types of electromagnetic radiation on the radio spectrum (which includes radio and TV broadcasts, Wi-Fi networks, cell signals, Bluetooth, and the signals used by virtually every other wireless device) are banned to minimize disturbance around the National Radio Astronomy Observatory, home to the world’s largest steerable radio telescope.
For most people, this restriction is a nuisance. But a few dozen people have moved to Green Bank (population: 147) specifically because of it. They say they suffer from electromagnetic hypersensitivity, or EHS—a disease not recognized by the scientific community in which these frequencies can trigger acute symptoms like dizziness, nausea, rashes, irregular heartbeat, weakness, and chest pains. Diane Schou came here with her husband in 2007 because radio-frequency exposure anywhere else she went gave her constant headaches. “Life isn’t perfect here. There’s no grocery store, no restaurants, no hospital nearby,” she told me when I visited her house last month. “But here, at least, I’m healthy. I can do things. I’m not in bed with a headache all the time.”
The idea that radio frequencies can cause harm to the human body isn’t entirely absurd. Some research has suggested that long-term exposure to power lines and cellphones is associated with an increased chance of cancer, although most evidence says otherwise. But what these people claim—that exposure to electromagnetic frequencies can immediately cause pain and ill health—is relatively novel, has little medical research to support it, and is treated with deep skepticism by the scientific mainstream.
That hasn’t stopped them from seeking to publicize the dangers of wireless technology. One of the most prominent activists in the field, Arthur Firstenberg, gained notoriety in 2010 for suing his Santa Fe neighbor for the effects of her Wi-Fi network. But he began organizing EHS-sufferers way back in 1996—when digital cellular networks were initially installed across the country—forming the Cellular Phone Task Force and publishing Microwaving Our Planet, one of the first books on the topic. In the years since, a fringe movement has grown around the idea, with some 30 support groups worldwide for those affected by radiation. The purported “epidemic” is particularly concentrated in the United Kingdom and Sweden, where surveys have found that 1 to 4 percent of the population believes they’re affected.
Here in the United States, West Virginia’s Radio Quiet Zone has become a gathering place for the hypersensitive since the mid-2000s, when they first began arriving. Most find out about the area through EHS groups, at conferences, or by reading about it in the handful of news reports published over the last few years. Diane Schou estimates that, so far, 36 people like her have settled in and around the tiny town to escape radiation.
When you walk in the Schous’ two-story brick house, 4 miles up a forested road from the Green Bank post office, the first item you see might be a radiation meter they keep in their living room. She and her husband, Bert, moved here from Cedar Falls, Iowa, because they believe Diane is sensitive to very specific radio frequencies. She first began noticing her sensitivity in 2002, she says, when U.S. Cellular, a wireless provider based in the Midwest, built a tower near their farm. “I was extremely tired, but I couldn’t sleep at night,” she said. “I got a rash, I had hair loss, my skin was wrinkled, and I just thought it was something I ate, or getting older.” After she started getting severe headaches, she heard about EHS from a friend and did some reading online, and eventually came to believe the tower had triggered her latent sensitivity. She went for a consultation at the Mayo Clinic, but doctors refused to consider the possibility, and when she wrote to the FCC complaining about the tower, they simply replied by saying it was safe.
Over the next four years, she repeatedly left the farm to search for a safe place, traveling through Scandinavia (where their son was studying abroad) and logging more than 75,000 miles driving across the United States in their RV. She’d find relatively safe spots but still got pounding headaches and chest pains from a range of triggers: if someone nearby turned on his phone, if she drove past a signal tower, if a neighbor next door used a coffee maker. “It would be like a sledgehammer on top of my head,” she said. Initially, only U.S. Cellular phones had harmed her, but eventually, being near any electrical device was a risk. (Virtually all devices that use electricity, even if they don’t rely on wireless signals, emit a low level of radiation.)
Then, in 2007, she learned about the Radio Quiet Zone. When she visited, she finally started to feel better. She and Bert sold half of their Iowa farmland and bought the house in West Virginia, unfinished, and have since installed wiring with thick insulation to reduce radiation. (Bert—who gets much milder symptoms of EHS, including tinnitus—still goes back to their farm every summer to conduct corn research.) Over time, living without exposure reduced Diane’s sensitivity, and she can now tolerate many devices without pain. The Schous use a landline and an Internet-connected computer (without Wi-Fi). But they still haven’t found a refrigerator with low enough radiation emissions, so Diane manually fills an icebox with ice each day. Even now, if she leaves the Radio Quiet Zone, exposure can set her off: “I’ll say, ‘Oh, I have a headache,’ and then someone’s cellphone will ring,” she said. “This happens time and time again.”
The Schous often host EHS-sufferers who want to test out Green Bank. One person who relies on their hospitality is Deborah Cooney, a singer, pianist, and voice coach from San Diego. Her problems began in 2010, she told me, when a smart electricity meter was installed on her house; she believes this triggered her boyfriend’s heart issues, led to her own hypersensitivity, and even caused her cat to start panting, pacing, and shaking her paws. Over time, Cooney’s symptoms intensified—they included fatigue, numbness, circulation problems, and intense jolts of pain in her heart—and she impulsively moved out one night in October 2011. “I got so sick that I felt my life was in serious jeopardy, and if I didn’t leave that minute, I didn’t know if I’d survive,” she said. She drove cross-country to the one friend she had who didn’t get any cell service (he lived elsewhere in West Virginia) and learned about the Radio Quiet Zone soon after she arrived.
Currently, she lives without running water or electricity in a simple one-room cabin the Schous built at the foot of their driveway, because simply sleeping in a wired building makes her sick. During the day, she shares a nearby apartment with another hypersensitive person, where she cooks, bathes, and occasionally uses a computer. Because she has trouble finding work, she’s having money problems. Recently, she traveled to Texas and Florida to perform, sleeping in her car every night of the monthlong trip because of the devices and Wi-Fi networks in hotel rooms. “This is a tough place to live,” she says. “I really don’t know how I’m going to be able to support myself.”
Some residents of Green Bank, along with the nearby town of Marlinton—also in the Radio Quiet Zone—apparently aren’t thrilled about this influx.* According to Schou, many locals are reluctant to rent housing to people with EHS, perhaps a result of the fact that in a remote area with few job opportunities, any new arrivals only heighten competition—and maybe because they’re likely to ask for special treatment. Schou told me that since she requested to have the fluorescent lights shut off at the community center, she’s faced intense discrimination: Packages have been stolen from her porch, and she once found a dead groundhog in her mailbox. “I’ve been told, ‘We don’t want your kind of people here,’ ” she said. Cooney was banned from the radio observatory for bringing up radiation issues at a town meeting held there and says her tires have been punctured in the night more than once. (I tried to talk to some locals about their new neighbors—but it’s hard to do a man-on-the-street interview in an area with so few streets or proverbial men.)
Cooney, like many with EHS, is particularly angry about the rollout of smart meters by electric utilities in many parts of the country. In some places, the backlash has been fierce, in part because of the belief that their wireless signals (used to monitor electricity consumption in real time) are dangerous. In Maine, consumers successfully demanded opt-outs for those who don’t want smart meters installed, while one utility in Hawaii switched to an opt-in program. But Cooney says this doesn’t go far enough: “Those options doesn’t let me opt out of the smart meter on my neighbor’s house, 10 feet outside my door, or the bank of 100 smart meters on the apartment building behind by house. And radiation doesn’t respect property rights.” She’s currently suing California’s Public Utilities Commission for $120 million in damages and wants a decision that bans smart meters entirely. Cooney also believes the telecommunications industry has been actively concealing the dangers of radio frequencies for some time. “They just want to keep profits high,” she said. “They want to keep injuring people because they don’t want to pay the money it would take to correct the problem.”
It’s clear that Cooney, Schou, and the others are suffering. But the question remains: What exactly is “the problem”?
Even a skeptical thinker can be briefly entranced by the notion that researchers may have simply failed, so far, to uncover a real disease—as Carl Sagan was fond of saying, “the absence of evidence is not evidence of absence.” It’s especially tempting when talking to someone like Nicols Fox, who reported for the Economist on food safety issues for more than a decade and wrote three books before moving to the nearby town of Renick, W.V., in 2008 in an attempt to control her EHS. A science-minded person who probably would have once scoffed at the idea of hypersensitivity, she gradually came to believe that her shooting pains, unpredictably plunging heart rates, and difficulty speaking were a result of years in front of a computer. “I got more and more sensitive, and eventually there was a day when my body just screamed when I touched the keyboard,” she said.
Now, she lives simply in a little two-bedroom house on a forested ridge and does her writing on a typewriter (she’s working on a novel), mirroring the Luddite tradition she once wrote a book about. At night, she wears a shirt woven with silver fibers to reduce her radio frequency exposure, and though her house has electricity, she shuts it off and uses gas lamps whenever possible. During our conversation, her voice would occasionally get cracked and raspy if I got too close with my audio recorder. In the five years since she’s moved to the Radio Quiet Zone, she hasn’t left once.
Fox’s position on the dangers of radio frequency seems to make sense at first glance. “It’s completely artificial, we’ve invented it, and it’s never been on this planet before, so nothing—not animals or humans—is adapted to it,” she told me. Of course, this kind of thinking (that a natural state is inherently better than an unnatural one) is a logical fallacy, and can’t replace actual evidence in proving the existence of EHS. Nevertheless, Fox and others who believe they suffer from it often compare wireless devices to tobacco—a dangerous addiction that many of us sign up for before fully understanding the risks.
Unlike many people who believe they suffer from EHS, Fox doesn’t seem particularly worried about proving it. “I don’t care if there’s research or not,” she said. “I’ve done my research. Meaning, I’ve sat in the doctor’s office and seen my heart range drop to 36 beats per minute when they turn the equipment on.” As she points out, there’s no reason why she’d turn her life upside-down—abandoning her career and selling her house on Maine’s Mount Desert Island—to fake a disease.
But “faking it” isn’t the right way to discuss EHS—both because it alienates sufferers by making them defensive and because, more importantly, that doesn’t seem to be the case. According to research, these people’s symptoms may be real. But—and this is the important part—radiation isn’t to blame. A 2010 meta-analysis of 46 studies concluded that “repeated experiments have been unable to replicate this phenomenon under controlled conditions,” while the World Health Organization simply says that “well controlled and conducted double-blind studies have shown that symptoms were not correlated with EMF exposure.”
The primary way of testing is a provocation study, in which a purported EHS-sufferer is exposed to either an electromagnetic field or a sham field and asked to identify which is which. James Rubin, a psychologist at King’s College London who studies psychogenic illnesses, has analyzed the literature on provocation studies and conducted some at his own lab. His most recent meta-analysis—which covered 1,175 participants in 46 studies—found no rigorous, replicable experiment in which radio frequencies were identified at rates greater than chance. “It is definitely the case that some people experience symptoms that they attribute to electromagnetic frequencies,” he told me. “But is it really these frequencies causing the symptoms? At the moment, we can say that there simply isn’t any robust evidence to support that.”
Some EHS-sufferers criticize provocation studies, saying that holding them in a lab means spillover radiation from equipment and nearby buildings even in the sham condition. They also argue that the experiments don’t necessarily use the correct radiation frequency. (“The scientist is pretending to be God, knowing what frequency that person will react to,” Diane Schou said to me.) But Rubin points out that many provocation studies start with an unblinded stage, where the participants are truthfully told whether the electromagnetic field is on. “They almost always report symptoms when they know it is on, and not when they know it is off,” Rubin said. “In the second stage, when the experiment is repeated double-blind, they report symptoms to the same extent in both conditions.” When the participants know whether the field is on, in other words, contaminant radiation and frequency specificity suddenly aren’t such big problems.
As such, the best predictor for whether a hypersensitive person will experience symptoms isn’t the presence of radio frequency—it’s the belief that a device is turned on nearby. An elegant demonstration of this on a much larger scale took place in 2010, when residents of the town of Fourways, South Africa, successfully petitioned for a cell signal tower to be taken down because of the sickness caused by its radiation—even though it was later revealed that it hadn’t been switched on during the time of their complaints.
The idea of EHS is also undermined by our basic understanding of electromagnetic radiation. The full spectrum of electromagnetic radiation is divided into ionizing and non-ionizing frequencies. The former category, which includes X-rays and nuclear fallout, is energetic enough to tear electrons off our body’s atoms and cause radiation sickness; the latter isn’t. While the frequencies in this latter group (which includes visible light, cell signals, Wi-Fi, and the radiation from power lines) can burn biological tissue at extremely high intensities, our devices operate at levels well below anything considered harmful. The alluring idea that life hasn’t evolved to withstand non-ionizing radiation becomes silly when you consider that the main source of it on planet Earth is sunlight.
As Fox and others note, there is research supporting the idea that EHS is real—but scientists largely dismiss it as pseudoscience. Most well-known is the BioInitiative Report (a non–peer-reviewed publication authored by 29 self-described “scientists, researchers and public health policy professionals”), which has been widely criticized for selectively using favorable studies and data. The European Commission noted that, contrary to its claims, the report was a post facto assembly of many different papers and studies, not the consensus of a working group, and that it often ignored the conclusions of the researchers themselves in interpreting the data. A recent article in the Guardian cited a 2011 study by a team of LSU neurologists that purported to find that electromagnetic frequencies caused headaches and muscle twitching, but the study involved only one subject—and even she wasn’t able to identify if a field was turned on at rates better than chance.
Given the data, the long-hidden danger of tobacco isn’t an apt parallel for the supposed harm of radio frequency radiation. But other episodes from history are. Technology historian Genevieve Bell says that in the early days of rail travel, experts warned that if a woman traveled faster than 50 miles per hour, her uterus could suddenly fly out of her body. Bell has charged the many instances throughout history in which new technologies triggered unfounded, irrational “moral panics.” She theorizes that innovations which change our relationship to time, space, and other people are the most likely to incite fear. It’s hard to imagine technologies that hit all three of these all comprehensively as smartphones and the mobile Web.
You could also view EHS as a mass psychogenic illness, in which very real symptoms arise from a socially contagious belief in a nonexistent disease. In 1962, for example, after a June bug infestation at the Montana Mills textile factory in North Carolina, workers began getting sick: They broke out in rashes, experienced nausea, and in some cases fainted and required hospitalization. A total of 62 workers exhibited symptoms, but doctors and entomologists couldn’t find any explanation. In a seminal 1968 study, a pair of psychologists who had interviewed the staff concluded that their physical symptoms had been triggered by the belief that they were at risk, reinforced by local news stories about the infestation and resulting contagion. Interestingly, those with close friends who’d gotten sick first were more likely to develop symptoms, as were those more stressed and dissatisfied with their jobs. Other episodes attributed to mass psychogenic illness include a supposed post-9/11 chemical attack at a Maryland Metro station (in which window cleaner somehow caused 35 people to develop headaches, nausea, and sore throats), and last year’s mysterious outbreak of twitching among female high school students in Le Roy, New York.
As The New Yorker recently pointed out in a blog post, EHS, along with these types of episodes, hint at the bizarre power of the nocebo effect: the flip-side of the placebo effect, in which inert substances or the suggestion of harm brings about real physical symptoms. In many studies of the nocebo effect, simply explaining to patients that a pill might trigger side effects has been enough to cause everything from back pain to erectile dysfunction. “If you believe that a substance, compound, or phenomena harms you, and you start experiencing symptoms, there’s confirmation for your belief right there, and then it’s a self-fulfilling prophecy,” Brian Dunning, a prominent skeptic who hosts the Skeptoid podcast and frequently takes on pseudoscientific claims, told me. “You see that your phone has a signal or that there’s a Wi-Fi router in the room, it further increases your stress level, and you have very real and very distressing physical symptoms. Once you have this confirming experience, it becomes really difficult to sit there and be told otherwise.”
Our brains’ expectations, it turns out, have a surprisingly potent effect on the functioning of our bodies. If the people who moved to Green Bank truly suffer from piercing headaches, nausea, and dizziness when they are around wireless signals, the nocebo effect (and previous instances of mass psychogenic diseases) is as good an explanation of anything we have so far.
But what does this mean for people who believe they suffer from EHS? Probably not much. Science might say that they can’t possibly be allergic to cellular networks, but as long as they are certain they are, the Radio Quiet Zone is the one place they can get relief.
So, for now, most of them plan to stay in Green Bank, and more arrive all the time. In just the week before I visited, Bert Schou told me, they’d gotten calls from people in New Mexico, Oklahoma, and Virginia asking whether they could come stay. Diane wants to raise money to build a resource center for the hypersensitive nearby, where they can be medically evaluated in a radiation-free setting and stay overnight when necessary.
Above all, they want to spread the message that electromagnetic radiation is dangerous—and that the only solution is getting away from this invisible form of pollution. “You might find a friend or someone in your workplace who’s not feeling well,” Bert said to me as I stood in his driveway, getting ready to head out before it got dark. “Bring them here, and they might feel better, too.”
This article arises from Future Tense, a collaboration among Arizona State University, the New America Foundation, and Slate. Future Tense explores the ways emerging technologies affect society, policy, and culture. To read more, visit the Future Tense blog and the Future Tense home page. You can also follow us on Twitter.
Correction, April 12, 2013: This article originally misspelled the name of the town of Marlinton, W.Va.
Joseph Stromberg is a science reporter for Vox.com. Follow him @josephstromberg.