Chemicals fuel debate over mysterious ailment
The Denver Post (9.19.2009, reprinted for safekeeping)
BOULDER — Meggan Smoler buries her face in her hands and collapses into the back seat of the Subaru she has called home for the past four months.
“I’m fighting to stay alive in a world I can’t tolerate,” says the 32-year-old mother. “I don’t know how I can make it through the next 24 hours.”
Smoler complains of blacking out unexpectedly, nerve pain and fatigue. Her speech slurs in midconversation, and she says her vision sometimes blurs.
Unable to find a home she can tolerate, she has lived in her car — with her husband and 7-year-old son — all summer.
Smoler is crippled, she says, by encounters with routine chemicals such as pesticides, perfume, paint, air fresheners and car exhaust. She is joined by as much as 16 percent of the U.S. population who describe ailments that remain a medical mystery. Sufferers call their disease multiple chemical sensitivity, or MCS.
While many doctors and scientists call their physical symptoms an eruption of psychological stress, some research is uncovering scientific underpinnings to MCS. Japan, Germany, Canada, Austria and Great Britain have acknowledged the disease as real and eligible for insurance coverage. Colorado has even given MCS its own special month.
“I literally exist to prove to the world how toxic it is getting,” says Smoler, who thinks her big problems started five years ago in a moldy house. “I am the canary in the coal mine.”
Those who believe MCS is real say it stems from exposure to low levels of routine chemicals and pollutants such as pesticides, paint, smoke, perfumes, solvents and building products.
But citing a lack of science-based evidence showing a link between the chemicals and MCS symptoms, the most respected medical groups in the country have declined to recognize MCS as a clinical disease.
Myth vs. reality
Denver clinical psychologist Herman Staudenmayer, author of the 1998 book “Environmental Illness: Myth & Reality,” is among the skeptics. For 20 years, he has traveled the country debunking “clinical ecology” and MCS and arguing that the best way to cure MCS is through psychotherapy.
He has conducted tests that he says show MCS sufferers do not objectively react to chemical exposures.
“I don’t call it a disorder; I call it a belief system,” he said. “These environmental physicians exploit patients by telling them they have chemical sensitivities. It’s analogous to a religious cult. These people have certain needs, and the cult leaders provide them with what they need. They authenticate, validate their beliefs.”
Believers in MCS point to researchers, many studying the baffling symptoms of military veterans with Gulf War syndrome, who have found particular genes and missing enzymes — ones that assist in detoxifying the body — among people who say the are chemically sensitive.
“It is a stunningly common disease, even more common than diabetes, and may even have wider health ramifications than diabetes,” says Dr. Martin Pall, a molecular bioscience researcher at Washington State University and author of the book “Explaining ‘Unexplained Illnesses.’ ”
“It is no longer sustainable for the medical community to keep ignoring the size and sweep of this epidemic.”
Pall has identified classes of chemicals that produce specific responses in the body and studied how some immune systems can become hyper-sensitive to those chemicals.
“The real tragedy here is that there are so many self-appointed experts who have been arguing that MCS does not exist and therefore we can keep using chemicals like we have.”
If formal recognition ever comes, the national economic implications are sweeping, with insurance companies, Medicare, Medicaid and Social Security Disability on the hook for care.
As early as 1994, when MCS issues first were drawing nationwide attention through lawsuits and workers’ compensation claims, the American Council on Science and Health published a report arguing that formal recognition of MCS claims would be financially “catastrophic.”
That potential impact is yet another hurdle to acknowledging MCS, say sufferers.
“It’s very political. We are going up against fragrance, pesticide and chemical companies; some of the most powerful in dustries out there,” says Jill Iwas kow, a 41-year-old Boulder mom who has battled MCS for eight years. “Many diseases went through this same criticism before they were properly understood. Right now we are at the tipping point where there are simply too many people with chemical sensitivities for doctors to write them off anymore.”
“We get trampled”
Many people who say they suffer from MCS trace their worst symptoms to an exposure to pesticide or mold, two scientifically proven irritants. Colorado is one of 10 states that offer a pesticide registry so residents can receive advance notice when parks, roadways and public areas will be sprayed with chemicals.
The city of Denver’s pesticide registry began in 1994 and now has 170 participants, up from 112 in 2006, the last year of available registry data.
Benevolence Barrymore is back living in her car for the fourth time this summer. She heads there when landscape companies spray pesticides near her Englewood apartment.
The 77-year-old artist and poet says her symptoms prevent her from even touching the fresh ink in her mail or reading a newspaper. The persistent pesticide applications, she says, are preventing her body from recovering. She laments how easily her pleas for help are dismissed. She, like Smoler, calls herself the “canary in the coal mine.”
“The pollution of the planet is a stampede, and because we are weaker, we get trampled first. But that doesn’t stop the stampede,” she says. “Once we are all gone, it will be too late for everyone else.”
Healing through detox
For those who find doctors willing to treat MCS as a physical disease, the treatment can be as isolating as the symptoms. Following detoxification, the primary treatment involves limiting exposure to damaging chemicals. Mostly that means sequestration in a carefully built “safe house” where offensive chemicals are banished.
“My life was saved because of my home,” says Caryl Schonburn, who slept with hundreds of building materials next to her pillow before approving their use in the construction of her toxic-free safe house near LaPorte. “When you have a safe house, it gives your immune system a chance to rest and time to heal.”
Dr. Pierre Brunschwig at Boulder’s Helios Integrated Medicine clinic, provides a host of treatments to his MCS patients, including intravenous nutrient drips. MCS symptoms vary, he says, depending on how patients respond to different chemicals and the strength of their immune systems.
Brunschwig says that although chemicals are tested for safety in isolation, they should be studied while they interact with the world.
“There are complex interactions between toxins, ecosystems and individuals that we don’t clearly understand, and MCS is a modern disease reflecting the complexity of those interactions,” he says. “What about their biology makes them so susceptible and what does that mean for our population as a whole? No one is answering those questions.”
“…The American Academy of Environmental Medicine in 2008 said the more than 90,000 chemicals in routine use in the world were sickening 10 percent to 15 percent of Americans.
“‘The fact that chemically sensitive individuals demonstrate exquisite vulnerability to toxic injury should serve to alert us to the disturbing reality that our modern industrial society, despite its many advantages, may ultimately compromise the health of us all.'”