=======================Electronic Edition========================

.                                                               .

.           RACHEL'S ENVIRONMENT & HEALTH WEEKLY #585           .

.                    ---February 12, 1998---                    .

.                          HEADLINES:                           .

.                  A NEW MECHANISM OF DISEASE?                  .

.                          ==========                           .

.               Environmental Research Foundation               .

.              P.O. Box 5036, Annapolis, MD  21403              .

.          Fax (410) 263-8944; Internet: erf@rachel.org         .

.                          ==========                           .

.  Back issues available by E-mail; to get instructions, send   .

.      E-mail to INFO@rachel.org with the single word HELP      .

.    in the message; back issues also available via ftp from    .

.    ftp.std.com/periodicals/rachel and from gopher.std.com     .

.            and from http://www.monitor.net/rachel/            .

.    Subscriptions are free.  To subscribe, E-mail the words    .

.   SUBSCRIBE RACHEL-WEEKLY YOUR NAME to: listserv@rachel.org.  .

=================================================================

A NEW MECHANISM OF DISEASE?

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;

################################################################

                             NOTICE

Environmental Research Foundation provides this electronic

version of RACHEL'S ENVIRONMENT & HEALTH WEEKLY free of charge

even though it costs our organization considerable time and money

to produce it. We would like to continue to provide this service

free. You could help by making a tax-deductible contribution

(anything you can afford, whether $5.00 or $500.00). Please send

your tax-deductible contribution to: Environmental Research

Foundation, P.O. Box 5036, Annapolis, MD 21403-7036. Please do

not send credit card information via E-mail. For further

information about making tax-deductible contributions to E.R.F.

by credit card please phone us toll free at 1-888-2RACHEL.

                                        --Peter Montague, Editor

################################################################