MCS article in the Denver Post

[Guest guest]

Chemicals fuel debate over mysterious ailment

By Blevins

The Denver Post

September 19, 2009

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. Sheis 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.

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 industries out

there, " says Jill Iwaskow, 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. "

Blevins: 303-954-1374 or jblevins@...

________________________________

****Official statements about MCS from U.S. medical groups.

(source: The Interagency Workgroup on Multiple Chemical Sensitivity,

August 24, 1998. www.health.gov / The American Academy of Environmental

Medicine)

The American Academy of Allergy, Asthma and Immunology updated their MCS

position in 1997. It includes:

" Because of the subjective nature of the illness, an objective case

definition is not possible. Allergic, immunotoxic, neurotoxic,

cytotoxic, psychological, sociologic, and iatrogenic theories have been

postulated for both etiology and production of symptoms. There is no

scientific evidence to establish any of these mechanisms as definitive.

A causal connection between environmental chemicals, foods, and/or

drugs and the patient's symptoms is speculative and not based on the

results of published scientific studies. "

The American College of Occupational and Environmental Medicine said

in its 1991 position on Multiple Chemical Hypersensitivity Syndrome:

" MCHS is presently an unproven hypothesis and current treatment

methods represent an experimental methodology. The College supports

scientific research into the phenomenon to help explain and better

describe its pathophysiological features and define appropriate

clinical interventions. "

The American Medical Association's 1992 statement on clinical ecology:

" Until such accurate, reproducible, and well-controlled studies are

available, the American Medical Association Council on Scientific

Affairs believes that multiple chemical sensitivity should not be

considered a recognized clinical syndrome. "

The academy later co-authored a 1995 report, " Indoor Air Pollution, "

along with the American Lung Association, the Consumer Product Safety

Commission and the Environmental Protection Agency, noting that

" current consensus is that in cases of claimed or suspected MCS,

complaints should not be dismissed as psychogenic, and a thorough

workup is essential. Primary caregivers should determine that the

individual does not have an underlying psychological problem and should

consider the value of consultation with allergists and other

specialists. "

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. "

http://www.denverpost.com/news/ci_13371037