[CO-CURE] NOTICE: Multiple Chemical Sensitivities can drive sufferers into pover

[Guest guest]

I personally don't think this says anything earth-shattering that

those with MCS don't know - that is not to say that those whom do not have MCS

are

aware of it however. I do think it is worth reading though.

For myself; I think I will give a copy to my family members and several

friends.

blessings

Shan

 

[This may be of interest to those with ME/CFS and/or fibromyalgia who also

have MCS or know someone who does.]

 

Sense and Sensitivities

Multiple Chemical Sensitivities can drive sufferers into poverty as well as

ill health

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.

 

Now imagine that you're allergic to virtually all of them.

 

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 effective treatment.

 

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

wench 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.

 

" 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 shelter. "

 

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 crucial accommodations.

 

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 symptom-free life.

 

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 MCS. "

 

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

safehousing. 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. "

 

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 Chemical Sensitivities.)

 

" [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. " Outof

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 cadmium.Very little is known about how individual chemicals

affect the human body, let alone the potential cumulative effects of dozens or

hundreds of interactingchemicals. 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 harmfulness.

 

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.

 

- - - - - - - - - -

Hymas is Grist's editorial assistant. He's had Multiple Chemical

Sensitivities since 1998.

 

 

Source:

 

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