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#585 - A New Mechanism Of Disease, 11-Feb-1998

Multiple chemical sensitivity (MCS) is an ailment, or a family of
ailments, that has very real consequences for tens of millions of
Americans.

In various large surveys 15% to 30% of Americans (37 to 75 million
people) report that they are unusually sensitive or allergic to certain
common chemicals such as detergents, perfumes, solvents, pesticides,
pharmaceuticals, foods, or even the smell of dry-cleaned clothes. An
estimated 5% (13 million people) have been diagnosed by a physician as
being especially sensitive. Many of these people react so strongly that
they can become disabled from very low exposures to common substances.
[1,pgs.232-233] Typical symptoms include prolonged fatigue, memory
difficulties, dizziness, lightheadedness, difficulty concentrating,
depression, feeling spacey or groggy, loss of motivation, feeling tense
or nervous, shortness of breath, irritability, muscle aches, joint
pain, headaches, head fullness or pressure, chest pains, difficulty
focusing eyes, nausea, and more. This group of symptoms is known as
environmental illness or, more commonly, multiple chemical sensitivity
(MCS), meaning "sensitivity to many chemicals."

MCS has been recognized by its symptoms for 50 years because MCS
sufferers in many geographical areas, researchers studying them, and
doctors treating them, have reported a remarkably consistent picture of
disease. However, because MCS sufferers react to chemicals at levels
that are hundreds or thousands of times lower than allowable
occupational exposures, traditional toxicology dictates that their
symptoms cannot be caused by chemical exposures. Nor is MCS a true
allergy because there are no IgE-mediated reactions involved, so
allergists don't know what to make of it.

In sum, because MCS does not fit any of the three currently-accepted
mechanisms of disease --infectious, immune system, or cancer --
traditional medicine has not known how to explain MCS, and so has often
labeled it "psychogenic" --originating in the patient's mind. This has
left MCS sufferers in limbo. Told they are crazy, or imagining their
disease, or making it up, they find themselves passed from physician to
physician without any satisfactory answers and often without relief
from their very real distress. (Some MCS sufferers DO have
psychological symptoms, but that doesn't necessarily mean their disease
ORIGINATES in their mind.) Forty percent of MCS sufferers report having
seen more than 10 medical practitioners.

MCS came to the attention of mainstream science and medicine forcibly
in 1987 when U.S. EPA (Environmental Protection Agency) installed
27,000 square yards of new carpeting and painted and remodeled office
space at its Waterside Mall headquarters in Washington, D.C. Some 200
agency employees developed symptoms associated with "sick building
syndrome"[1,pgs.174,76-77] --and several dozen EPA employees later
reported developing MCS. The National Research Council has now accepted
that "sick building syndrome" is a real phenomenon, producing MCS-like
symptoms.

Most recently, MCS has been in the news because there are two new,
large populations of people who exhibit some or all of the symptoms of
MCS: Gulf War veterans, and women with silicone breast implants.

Since 1990, progress has been made defining and understanding MCS,
though there is still a long way to go. Nevertheless, real progress has
been made. A new book --a second, updated edition of CHEMICAL
EXPOSURES; LOW LEVELS AND HIGH STAKES, by Nicholas A. Ashford and
Claudia S. Miller[1] --offers a lucid, thoughtful description of the
current science and medicine of MCS, suggests a hypothesis (which could
be tested) about the origins of the disease(es), and offers real hope
to sufferers that one day their ailments will be understood and
treated, possibly even prevented.

The stakes are enormous, and the chemical industry knows it. If a
clearly-defined disease emerges from research on MCS, with chemical
causes that are understood, then it can't be too many decades before
chemical corporations will have to face liability and compensation
claims from millions of victims harmed by their products. Who knows
where this might lead in the relationship between corporations and an
angry public?

Like the tobacco companies before them, the chemical corporations are
bent on casting doubt on the serious medical research now being
conducted to discover the causes and physiologic mechanisms of MCS. The
chemical corporations have labeled such research "junk science," and
they have funded a new research arm of their own (modeled on the
Tobacco Research Institute?) called the Environmental Sensitivities
Research Institute (ESRI). DowElanco, Monsanto, Procter and Gamble, the
Cosmetic Toiletries and Fragrances Association, and other companies and
trade associations involved in the manufacture of pharmaceuticals,
pesticides, and other chemicals, each pay $10,000 per year to keep ESRI
going. The head of ESRI is Dr. Ronald Gots, who also runs something
called the National Medical Advisory Group, which provides expert
witnesses to defend the chemical corporations in tort lawsuits. Dr.
Gots has published no original peer-reviewed research on MCS, yet he
and ESRI specialize in claiming that MCS is a mental disorder. Dr. Gots
says, "[E]verything that is known about MCS to date strongly suggests
behavioral and psychogenic explanations for symptoms."[1,pg.280] In
other words, if you exhibit some or all of the symptoms of MCS, you are
probably crazy and if your doctor thinks otherwise, he or she is
probably a charlatan. Such a claim has special staying power because it
cannot be tested scientifically. As long as anyone is around to assert
its validity, such a claim surrounds MCS research with an aura of
controversy --and controversial topics have trouble attracting
mainstream funding.

Here is a typical "advertorial" by ESRI from the February, 1996 issue
of THE MERCHANDISER (Spring Grove, Pennsylvania):

"Multiple Chemical Sensitivities: Fear of Risk or Fact of Life?

"Scientists are increasingly concerned that a doubtful new diagnosis--
supposedly caused by everything 'man-made' in the environment--is
unnecessarily making thousands of Americans miserable each year. One of
these so-called 'modern diseases' is called MCS, for Multiple Chemical
Sensitivities. Many established scientists and physicians doubt MCS
actually does exist; it exists only because a patient believes it does
and because a doctor validates that belief. For information on MCS,
write the Environmental Sensitivities Research Institute, 6001 Montrose
Road, Suite 400, North Bethesda, MD 20852."

The authors of the new book on MCS are highly qualified. Nicholas
Ashford is professor of technology and policy at Massachusetts
Institute of Technology (MIT) with advanced degrees in chemistry and
law. Claudia Miller is a medical doctor with a masters degree in
environmental health; she teaches at the University of Texas Health
Science Center in San Antonio. Their 1989 report on MCS, funded by the
New Jersey Department of Health, won the prestigious Macedo award of
the American Association for World Health. Their new book is a pleasure
to read. It is clear, thoughtful, intelligent, and carefully written.
It makes an important contribution to our understanding of chemical
sensitivity.

In reviewing several hundred studies --not all of them of good quality
--Ashford and Miller describe the common themes that emerge from the
good ones: MCS seems to be a disease (or family of diseases) that
occurs in two stages. MCS is "initiated" by a high exposure (for
example, a chemical fire, or spill) or by repeated moderate exposure to
pesticides or solvents or some other strong chemical(s) such as those
found in chemical dumps or used in remodeling homes or offices,
including new carpeting. After the "initiating" exposure, symptoms are
then "triggered" by extremely low exposure to many different chemicals,
such as those found in fragrances, or tobacco smoke, pharmaceuticals,
or foods. Not everyone exposed to chemicals gets MCS, just as not
everyone stung by a bee goes into anaphylactic shock. A certain portion
of the population seems predisposed to react strongly to chemicals
after an initiating event.

The mechanisms of MCS are not understood, but recent evidence suggests
that the nervous system (or perhaps the nervous and immune systems
together) somehow become sensitized by an initiating exposure.
Thereafter, low exposures to common chemicals bring on major symptoms
way out of proportion to the size of the stimulus.

Ashford and Miller suggest that MCS is not really the best name for
this ailment or family of ailments because it fails to reflect the
importance of the initiating chemical exposure. They suggest that the
name Toxicant-Induced Loss of Tolerance (TILT) better describes the
true nature of the illness(es) --initiated by a toxic exposure which
leads to the loss of tolerance for common chemicals. They suggest that
different initiating events may give rise to somewhat different
ailments, all of which cause sensitivity to chemicals --just as
different infectious diseases can all cause a fever.

The scientific community has held several symposia on MCS (or TILT)
since 1990 and a scientific consensus has been reached on the double-
blinded, placebo-controlled research that needs to be conducted to
define this disease (or disease family).

Despite this consensus, the research is not being conducted because the
needed facilities do not exist. A special "environmental medical unit"
needs to be built, preferably in a hospital, to test MCS patients by
exposing them to chemicals under controlled conditions and observing
their responses. Despite numerous recommendations that such a unit
should be built --including a recommendation from the National Research
Council --the funding is not there.

Without naming him, authors Ashford and Miller blame Ronald Gots and
others like him for the logjam: "...those who continue to promote
untested and untestable psychogenic theories for MCS are part of the
problem. Their lobbying of policymakers and others in this regard has
contributed to widespread governmental inertia on this issue, making it
near impossible to obtain funding for essential studies specifically
directed toward MCS. Many of those who advocate psychological
explanations in government-sponsored meetings and in the scientific
literature are paid corporate spokespersons or consultants with
financial conflicts of interest. Yet these conflicts generally are not
revealed when these individuals appear in scientific meetings, author
scientific articles, serve on official panels or boards, or serve as
reviewers of grant proposals. Policymakers and publishers of scholarly
journals need to recognize and remedy this appalling
injustice."[1,pg.256]

These are not academic questions. Seventy thousand Gulf War veterans,
alone, have sought help. They are told they must prove their disease
exists --but without research they have no proof. The same is true of
tens of thousands of women whose breast implants have left them with
many of the symptoms of MCS. (David Kessler, when he was head of the
Food and Drug Administration (FDA) said, "We know more about the life
of a tire than a breast implant.") These and millions of other people
are genuinely suffering, yet they are told --with no research basis --
that there is nothing medically wrong with them--it's all in their
minds. Only research can find the truth.

Quite possibly, MCS or TILT is a new, fourth disease mechanism parallel
to infections, immune disorders, and cancer. Those suffering its
symptoms cannot gain relief from their torment until the needed
research is done. Those who are being paid by chemical corporations to
stand in the way of that research deserve the labels inhuman and
inhumane. Would criminal be too strong a word?

--Peter Montague (National Writers Union, UAW Local 1981/AFL-CIO)

=====

[1] Nicholas A. Ashford and Claudia S. Miller, CHEMICAL EXPOSURES; LOW
LEVELS AND HIGH STAKES. Second Edition. (New York: Van Nostrand
Reinhold, 1998). ISBN 0-442-02524-6.

Descriptor terms: mcs; multiple chemical sensitivity; environmental
illness; allergies; nicholas ashford; claudia miller; low levels and
high stakes; tobacco strategy; junk science; monsanto; dowelanco;
procter and gamble; cosmetics, toiletries and fragrances association;
ronald gots; esri; national medical advisory group; pharmaceuticals;
pesticides; fires; environmental sensitivities research institute;
solvents; nervous system; immune system; toxicant-induced loss of
tilerance; tilt; environmental medical unit; research agendas; emu;
gulf war syndrome; silicone breast implants; breast implants; disease
mechanisms;