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Sense and Sensitivities .... Multiple Chemical Sensitivities can drive sufferers into poverty as
By Todd Hymas
17 Mar 2006
Consider the trappings of modern life: Calvin Klein Eternity,
gasoline, Gore-Tex, Aveda hairspray, paint, particle board,
polyurethane iPod cases.
Is this the face of the future?
Photo: iStockphoto.Now imagine that you're allergic to virtually all
Environmentalists usually think about chemical toxicity as either a
dramatic local crisis (Bhopal, Love Canal) or the simmering concern of
those far away (breast-feeding mothers in the Arctic) or far in the
future (our oft-evoked grandchildren). But for people suffering from
Multiple Chemical Sensitivities, the chemical crisis is already here.
Indeed, thanks to industrialization, it is already everywhere. And,
like so many environment-related health issues, it disproportionately
affects the poor -- and, moreover, drives many once financially stable
people into poverty.
As a disease, Multiple Chemical Sensitivities doesn't have an official
case definition yet (more on this soon), but rather refers to a broad
range of adverse symptoms brought on by an even more broad array of
everyday chemicals. These symptoms are often provoked at exposure
levels far below those that seem to affect the rest of the population
-- levels virtually always present in our homes, workplaces, and
social venues. They commonly include severe headaches, food
intolerances, difficulty breathing, nausea, irritation of the eyes,
ears, nose, throat, and skin, and disorientation or confusion, but
there are many more.
The best information currently available suggests that MCS is a
chronic condition with no cure. Although some treatments (such as
acupuncture) seem to help some patients, recent surveys by the
Chemical Injury Information Network, a nonprofit education and
advocacy organization for people with chemical sensitivities, found
that avoidance of problem chemicals was the only consistently
If only avoidance were as simple as it sounds. Just as modern life
almost inevitably involves contributing greenhouse gases to the
heating atmosphere, it is all but impossible to navigate the
industrialized world without being immersed in tens of thousands of
potentially troublesome human-made chemicals. And just as an honest
fight against global warming would pose a huge threat to powerful
energy companies, a real effort to take MCS seriously could throw a
wrench into the operations of a huge range of industries that produce
chemicals and chemical-laden products.
Research and You May Not Find
Mainstream medicine has been slow to recognize the role environment
can play in disease. With many doctors either unaware of MCS or
doubtful it's a real condition, simply getting diagnosed is a battle.
Even those who recognize the disease are often unfamiliar with
treatment options. As a result, MCS patients frequently must visit
multiple health-care practitioners -- a process that is both
emotionally and financially costly -- before they can put a name to
their illness and make the necessary (and often radical and pricey)
lifestyle adaptations it requires.
Introduction to the series.
How environmentalism got its elitist tinge.
Photos of Louisiana towns battered by Katrina.
A look at the poultry farms ravaging the South.
How coal mining has scarred the hills of Appalachia.
A virtual walking tour of the polluted South Bronx.
More stories on poverty & the environment.
Join the discussion"Prior to 1988, I was a healthy, athletic physician
who played drums in a rock band. A year later, I was severely disabled
with Multiple Chemical Sensitivities," wrote Ann McCampbell, a member
of the board of the Multiple Chemical Sensitivities Foundation and
chair of the MCS Task Force of New Mexico, in Focus magazine. "The
onset was subtle, with slowly worsening food intolerances, progressing
to the point I could only eat three green vegetables. By then I was
also having severe reactions to inhaled substances and had developed
headaches, fatigue, heart palpitations, abdominal pains, and nausea.
Like so many others with MCS, I could no longer tolerate where I lived
and was forced to live outside in my yard, the car, or a makeshift
Despite some improvements since then, "I go to few places outside my
home," she wrote, "in order to avoid exposures to cigarette smoke,
pesticides, perfume, vehicle exhaust, cleaning products, and other
toxic fumes which make me sicker."
McCampbell hasn't discovered what triggered her sensitivities, and her
baffling experience is typical of many others with MCS. The few
scientists studying the disease are baffled as well, struggling to
understand its etiology. Current theories range from a genetic
predisposition to chemical injury, to neurological damage, to
abnormalities in detoxifying enzymes, to a so-called "toxicant-induced
loss of tolerance" to environmental stressors, in which one particular
exposure to a toxic substance overwhelms a person's system and leaves
them unable to cope with exposures to a wide range of other toxins.
In fact, doctors have thus far failed to agree on a case definition
for the disease. That's created a catch-22: the lack of a definition
makes it more difficult to secure funding for MCS research, but more
research is needed to better understand and define (not to mention
treat and cure) the disease. "Right now, one of the things MCS
[researchers and patients] get hammered on is that there is no
agreed-upon case definition, despite the fact that three attempts have
been made to get the [Centers for Disease Control and Prevention] to
accept one," said Cynthia Wilson, executive director of the Chemical
Injury Information Network.
Other activists, like McCampbell, stress that there's a working
definition of MCS, and that the lack of a standardized case definition
shouldn't be used as an excuse to halt research or deny patients
What few surveys have been conducted on the prevalence of the disease
in the U.S. paint a patchy picture, but hint that it may be relatively
widespread. A 1995 survey by the California Department of Health
Services found that 6 percent of state residents reported
doctor-diagnosed MCS, while a more recent survey of Atlanta, Ga., area
residents published in the May 2004 issue of the American Journal of
Public Health found that 3 percent of respondents reported receiving
an MCS diagnosis.
Home Is Where the Health Is
If those figures are at all representative of the nation as a whole,
the number of MCS sufferers could range from 9 million to 17 million.
Some of them are undoubtedly able to function with lifestyle
adaptations: removing carpet from their homes, filtering air and
water, using ultra-eco-friendly cleansers and personal-care products,
eating organic foods, and limiting contact with toxic substances like
pesticides and solvents. Other patients, however, are far more deeply
compromised by the disease.
For those in the latter group especially, the No. 1 issue is housing.
"Because of the nature of construction materials, it's very difficult
for people [with MCS] to find safe housing," says CIIN's Wilson. And
without safe refuge, it is all but impossible to live a relatively
Some people with severe MCS try to build or renovate from the ground
up, using exclusively nontoxic materials, but even under the best
financial circumstances this is no small feat. Moreover, people can
only exercise so much control over their surroundings -- there are
neighbors and property owners to worry about. "Even if [people with
MCS] find safe housing," says Wilson, "it doesn't mean it stays safe
housing. If, for example, a bug shows up, a landlord typically wants
to spray a pesticide, [rendering] the housing no good for someone with
For many without a significant financial safety net, the quest for a
safe space is maddening -- and the first step on the road to economic
ruin. Susan Abod is a Santa Fe, N.M.-based vocal artist and filmmaker
with MCS whose latest film, Homesick, documents how people with MCS
are affected by their search for safe housing. The ability to cope
with the disease, she says, "has to do with access to finances and
resources. ... If you do have money, you can always find another home,
and you can refurbish it with safe products. But those of us who don't
have access to a lot of money or who are renters or who have assisted
housing from the government [face] a lot more limits."
Extreme Makeover: Home Edition.
Photo: iStockphoto.CIIN's Wilson concurs. "For lower-income people who
do not have the wherewithal to move or to find safe housing, it is a
big problem," she says. "Most people with MCS end up living in their
cars." Others wind up in a friend's backyard, a stripped-down RV, or a
canvas tent on public land. For that reason, the housing problem gets
worse in winter, says Wilson, "because people can't just go camping,
can't solve their problems by living outdoors."
Nor can they take advantage of traditional safety nets for the
homeless. People with MCS "have to stay away from most chemicals that
are on people's clothes, on people's bodies, and in buildings," says
Rhonda Zwillinger, an artist and photographer who spent close to a
decade interviewing and photographing some 250 people with MCS for The
Dispossessed Project, a powerful ongoing photo essay. (That project
was compiled into a book called The Dispossessed: Living With Multiple
"[The MCS homeless] are mostly not living in urban areas, they're
mostly trying to live in rural areas where the air is cleaner and the
water is cleaner, and that becomes a problem because the services [for
the homeless] are less available in rural areas," says Zwillinger.
"And they can't go into shelters the way the [non-MCS] homeless can,"
because in a busy building they would likely encounter any number of
chemicals their bodies can't handle.
It can be even more difficult finding an MCS-safe job. Even if a
workplace itself is a tolerable environment (rare, given the ubiquity
of toxic building materials), basic job-related interactions with the
general public can be impossible. "The way a typical story goes," says
Zwillinger, "is that people lose the ability to make a living because
they can't be out in the public arena" without getting ill. Some MCS
patients find a way to work from home (assuming they've found safe
housing) -- but that option is seldom available to poorer Americans
forced to rely on low-wage, low-skill jobs.
"Almost all of us have to make severe accommodations to [MCS], and it
does take a lot of money to successfully do that with any kind of
grace," said Wilson. "Most people find themselves one day employed and
the next day unemployable. The financial upheaval that this illness
causes is heartbreaking."
I Know Why the Caged Bird Stopped Singing
Even chemical companies no longer deny that chemicals accumulate in
our bodies simply by virtue of being alive today. But they insist that
the concentrations are too low to cause any harm. For MCS sufferers,
at least, that reassurance rings brutally hollow.
A well-publicized 2003 study by the Environmental Working Group and
Mount Sinai Hospital in New York found "an average of 91 industrial
compounds, pollutants, and other chemicals in the blood and urine of
nine volunteers." Out of the 210 substances tested for, 167 showed up
in at least one of the volunteers. Meanwhile, the Centers for Disease
Control and Prevention's latest National Report on Human Exposure to
Environmental Chemicals contains a detailed breakdown of 148 different
chemicals and substances found in a representative sample of the U.S.
population -- from organochlorine pesticides to dioxins to metals like
Spend your $.02
Discuss this story.Very little is known about how individual chemicals
affect the human body, let alone the potential cumulative effects of
dozens or hundreds of interacting chemicals. There are over 80,000
chemicals registered for use in the United States, with up to 2,500
new ones reviewed by the U.S. EPA every year, and government oversight
is minimal when there's any at all. Manufacturers are responsible for
safety-testing their own products, and they have no incentive to look
for potential problems -- quite the contrary.
The lack of chemical regulation in the U.S. is perhaps most glaring in
the case of cosmetics and personal-care products, which, given their
ubiquity, are subject to shockingly lax oversight. The Food and Drug
Administration has nominal authority over them, but little actual
regulatory power. Makers of lotions and potions aren't required to
file information on ingredients with the government, or report
cosmetic-related injuries. The FDA can't mandate safety studies of
cosmetics, and doesn't even have the power to order product recalls.
"An average adult is exposed to over 100 unique chemicals in
personal-care products every day," says Jane Houlihan, vice president
for research at the Environmental Working Group. "These exposures add
up." EWG has been sounding the alarm on carcinogenic or otherwise
worrisome cosmetic ingredients, and has built an interactive database
that ranks shampoos, deodorants, and other products on their potential
The ubiquity of cosmetics is just one reason people with MCS remain
segregated from society, though there have been some advancements on
this front in recent years. Some workplaces and schools (like The
Evergreen State College in Olympia, Wash.) have instituted
no-fragrance policies -- but in general, those with MCS cannot count
on much help or protection from employers, landlords, the government,
or the medical establishment.
It's a bitter irony, since many with MCS see themselves as canaries in
the modern-day coal mine. As recently as 1986, the exquisitely
sensitive yellow birds were used to detect the presence of dangerous
gases in mine shafts, and when they showed signs of illness -- when
they ceased to sing -- it was an unambiguous warning: evacuate.
As growing numbers of MCS sufferers are driven from their homes and
jobs, pushed to the fringes of medical science and the brink of
financial ruin, made sick by industrialized civilization itself, we
would do well to heed their equally urgent warning. And fast, because
this time around we can't evacuate. There's nowhere else to go.
- - - - - - - - - -
Todd Hymas is Grist's editorial assistant. He's had Multiple Chemical
Sensitivities since 1998.
Note from Ilena Rosenthal:
The most rabid and deceitful Chemical Industry hack, Stephen Barrett,
has led campaigns for years against fine scientists and doctors
looking to help the many like Todd who suffer from MCS.
This unlicensed for over a decade, so called 'psychiatrist' never was
able to pass the psychiatric board certification ... and has written
many deceitful articles on MCS for ACSH.org ... long funded by the
Thousands of women with breast implants are affected by MCS ... and
many of their physicians have been ravaged by this maniac.
This is just one:
Thankfully ... after years and years .. Dr. Sinaiko prevailed at huge
cost and loss of years of helping patients.
Unlike the scientists he harasses and attempts to destroy through
bogus investigations and attempts at their licenses ... Barrett
totally and utterly refuses to disclose on his MCS rants that the
chemical industry funds those who pay him ...
He has a team of idiots like Nanaweedkiller and disbarred and shamed
attorney Mark S Probert to back his campaign from hell.
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