MULTIPLE CHEMICAL SENSITIVITY
"DON QUIXOTE"
[Forwarded from PNEWS]
Reprinted with permission:
MULTIPLE CHEMICAL SENSITIVITY
A DISORDER TRIGGERED BY EXPOSURES TO CHEMICALS IN THE ENVIRONMENT
Synthetic chemicals are all around us. They're in the
products we use, in the clothes we wear, in the food we eat, in the
air we breathe at work. Because chemicals are everywhere in the
environment, it's not possible to escape exposure. No wonder,
then, that many people have become sensitized to the chemicals
around them. In fact, it is estimated that 15% of the population
has become sensitized to common household and commercial
products.
For some people the sensitization is not too serious a
problem. They may have what appears to be a minor allergy to one
or more chemicals. Other people are much more seriously affected.
They may feel tired all the time, and suffer from mental confusion,
breathing problems, sore muscles, and a weakened immune system.
Such people suffer from a condition known as Multiple Chemical
Sensitivity (MCS).
WHAT IS MULTIPLE CHEMICAL SENSITIVITY?
MCS is a disorder triggered by exposures to chemicals in the
environment. Individuals with MCS can have symptoms from chemical
exposures at concentrations far below the levels tolerated by most
people. Symptoms occur in more than one organ system in the body,
such as the nervous system and the lungs. Exposure may be from the
air, from food or water, or through skin contact. The symptoms may
look like an allergy because they tend to come and go with
exposures, though some people's reactions may be delayed. As MCS
gets worse, reactions become more severe and increasingly chronic,
often affecting more bodily functions. No single widely available
medical test can explain symptoms.
In the early stages of MCS, repeat exposure to the substance
or substances that caused the initial health effects provokes a
reaction. After a time, it takes less and less exposure to this or
related chemicals to cause symptoms. As the body breaks down, an
ever increasing number of chemicals, including some unrelated to
the initial exposure, are found to trigger a reaction.
MCS affects the overall health and feeling of well-being of
those with the disorder. It typically impairs many bodily
functions including the nervous system and digestion. Each
individual affected by MCS has a unique set of health problems. A
chemically sensitive person may also have other preexisting health
conditions. Many affected people experience a number of symptoms,
in relation to their chemical exposures:
________________________________________________________________
SYMPTOMS OF MCS
* headaches * flu-like symptoms
* asthma or other breathing problems * dizziness
* increased sensitivity to odors * mental confusion
* bloating or other intestinal problems * fatigue and depression
* short- and long-term memory loss * chronic exhaustion
People with MCS report many other health conditions such as:
* persistent skin rashes and sores * inflammation
* muscle weakness and joint pains * food allergies
* numbness and tingling * visual disturbance
* ear, nose and throat problems * autoimmune disorders
* cardiovascular irregularities * seizure disorders
* genitourinary problems * irritability
* persistent infections, esp. yeast * behavioral problems
* learning disabilities in children
_________________________________________________________________
MCS may result from a single massive exposure to one or more
toxic substance or repeated exposures to low doses. On one hand,
some people may become chemically sensitive following a toxic
chemical spill at work or in their community or after being sprayed
directly with pesticides. On the other, individuals may develop
this condition from spending forty hours each week in a poorly
ventilated building where they breathe a profusion of chemicals
common to our modern way of life.
In many cases, MCS has been brought on by a wide array of
chemicals found at home and work. Studies show that many of the
people diagnosed with MCS were:
_________________________________________________________________
PEOPLE DIAGNOSED WITH MCS
* industrial workers
* teachers, students, office and health care workers in tight
buildings
* chemical accident victims
* people living near toxic waste sites
* people whose air or water is highly polluted
* people exposed to various chemicals in consumer products, food,
and pharmaceuticals
* Gulf War veterans
_________________________________________________________________
Not all people with MCS fit any of these categories. For
example, some may have experienced a toxic exposure from flea or
roach sprays or from (urea formaldehyde) foam insulation in their
home. Other people with MCS cannot identify any situations where
they had unusual exposures to chemicals.
People with MCS may become partially or totally disabled for
several years or for life. This physical condition affects every
aspect of their life. They must make dramatic changes in lifestyle
at home. Their marriages and other relationships may end from the
stress of coping with this disabling condition. As members of the
workforce, they may drag themselves to work only to return home
sicker and more exhausted each day. Alternately they may be forced
to leave their jobs and deal with the devastating loss of income
and consequent poverty. However, even in the most severe cases,
some people eventually recover, at least partially.
WHAT CAN CAUSE MCS?
No one knows for sure what causes MCS. However, in non-
industrial workplaces, a number of common products and processes
are often identified as contributing to the onset of MCS:
_______________________________________________________________
SOME EXPOSURES LINKED TO MCS
* offgassing of new carpets * gas stoves
* cleaning supplies * house paints
* pesticides and wood preservatives * vehicle exhaust fumes
* new building materials and furnishings
* toxic chemicals used in art, photography, printing etc.
* formaldehyde in new clothes, books, and other products
* carbonless paper, inks, copying machine and laser printer
toner
* second-hand tobacco smoke
__________________________________________________________________
These substances are the causes of indoor air pollution and
are the contaminants in our air and water. Many of the chemicals
which trigger MCS symptoms are known to be irritants or to be toxic
to the nervous system. One especially harmful group of chemicals,
known as "volatile organics", readily evaporates into the air at
room temperature. Permitted airborne levels of such contaminants
can still make ordinary people sick.
When our bodies are assaulted with levels of toxic chemicals
that our systems cannot safely process, it is likely that at some
point in our lifetimes many of us will become ill. For some, the
outcome could be cancer or reproductive damage. Others may become
yhypersensitive to these chemicals or develop other chronic
disorders, while some people may not experience any noticeable
health effects. Even where high levels of exposure occur,
generally only a small percentage of people becomes chemically
sensitive. The threshold for toxic injury is not the same for
everyone because sensitivity varies greatly among individuals.
Most chemicals in consumer products remain untested for health
effects, such as cancer, reproductive problems, and the impacts of
long-term, low level exposure. How these substances affect women,
children, and people with existing conditions is also little
studied.
Once a person's defenses have been broken down and he or she
has become hypersensitive, a wide variety of common chemical
exposures can trigger a reaction. Just what products and other
chemicals which cause problems varies greatly among affected
individuals. These include the same products and chemicals which
can bring about MCS in the first place, as well as the following:
________________________________________________________________
OTHER PRODUCTS WHICH CAN CAUSE A TOXIC REACTION
* perfumes and fragrances * dry cleaning solvents
* detergents and other cleaners * anaesthesia
* prescribed medications
* artificial colors, flavors, and preservatives in foods, drinks,
and drugs
________________________________________________________________
TREATMENTS
MCS is difficult for physicians to define and diagnose. There
is no single set of symptoms which fit together as a syndrome, nor
a single diagnostic test for MCS. Instead, physicians should take
a complete patient history which includes environmental and
occupational exposures, and act as detectives in diagnosing this
problematic condition.
After the onset of MCS, a person's health generally continues
to deteriorate. It may only begin to improve once the chemical
sensitivity condition is uncovered. While a number of treatments
may help improve the baseline health status for some patients, at
the present time, there is no single "cure" except avoidance.
Avoiding the chemicals which may trigger reactions is an
essential part of treating MCS. Those with MCS who are able to
strictly avoid exposures often experience dramatic improvement in
their health over the period of a year or more. Yet the profusion
of new and untested synthetic chemicals makes this extremely
difficult.
Individuals affected by MCS often create a "sanctuary"
relatively free from chemical emissions in their home, where they
spend as much time as possible. Because of the serious impact of
even an accidental unavoidable exposure, MCS sufferers often spend
as much time at home as possible and often must choose not to
participate in society. As a result, they may experience intense
isolation, and loss of self-esteem and depression from not being
able to have an active work or social life. Therefore, supportive
counseling is often a very useful form of treatment.
THE MCS CONTROVERSY IN THE MEDICAL COMMUNITY
Many traditional allergists and other physicians discount the
existence of an MCS diagnosis. They claim that there is not yet
sufficient evidence that MCS exists. Research efforts regarding
the mechanisms that cause MCS have been inadequate and
unfortunately are often financed and supported by the industries
which benefit from chemical proliferation. Generally medical
doctors have not been trained to understand or seriously
investigate conditions such as MCS. In fact, the vast majority of
physicians receive very little training (four hours or less) in
occupational and environmental medicine or in toxicology and
nutrition.
Therefore, it is not surprising that many affected individuals
consult with a large number of specialists. People with MCS are
often even diagnosed with serious degenerative diseases. Often
baffled doctors tell their patients with MCS that their illness is
entirely psychosomatic -- in their head. And many whose health is
impaired by MCS have never heard of the condition. The lack of
support and understanding from physicians and the stress created by
having no explanation for symptoms tends to produce a high level of
anxiety and distress in people with MCS.
At this time, conventional medicine offers very few medical
treatments for MCS besides avoiding offending products.
Unfortunately, medications and other conventional medical
treatments offer little or no relief and may even prompt new sets
of symptoms. Treatment with anti-depressants masks the underlying
condition and can also cause other serious problems.
Physicians who clearly recognize the MCS phenomenon include
some occupational and environmental health specialists and those
MD's who specialize in the new field of clinical ecology. A wide
range of new or "alternative" treatments have been utilized by MCS
sufferers with varying success. Though some of these treatments
are still experimental in nature, they seem to help some
individuals with MCS. These treatments may include a combination
of the following: nutritional programs, immunotherapy vaccines,
food-allergy testing, detoxification regiments through exercise and
sweating, chelation for heavy metals, as well as any number of non-
Western healing methods. Diagnosis may involve unconventional
laboratory tests not customary in conventional medicine, including
tests for the presence of chemical contaminants, such as total body
burden of accumulated pesticides.
Many workers have shown improvement with these treatments,
though others have not. Unfortunately, these treatments are not
usually reimbursed by insurance plans, since few participating
practitioners support alternative approaches. Yet some disabled
workers have won reimbursement for such treatments through
successful Workers' Compensation claims.
MCS IS NOW RECOGNIZED AS A DISABILITY
Both the US Department of Housing and Urban Development (HUD)
and the Social Security Administration (SSA) have recognized MCS as
a disabling condition. People with MCS have won Workers'
Compensation cases. A recent human rights lawsuit in Pennsylvania
established the right of an affected person to safe living space in
subsidized housing. Both the Maryland State Legislature and New
Jersey State Department of Health have officially commissioned
studies of MCS. The NJ study provides an excellent overview of
medical and legal issues related to MCS.
Just as physical barriers prevent wheelchair access, chemical
use and emissions can prevent entry to those with MCS. A new
federal law called the Americans with Disabilities Act (ADA) will
protect the disabled from many types of discrimination. This law
provides for reasonable access to people with disabilities.
Reasonable accommodations enable people with MCS to enjoy access to
work, public facilities and other necessary settings. Whether an
individual developed MCS at work or was already sensitized prior to
employment, the right to a safe workplace should be insured.
For injured workers who have a right to Workers' Compensation
or Disability, it is necessary to find a physician who can diagnose
MCS and who will also support the patient's legitimate claims.
Finding such a physician is very important in winning such a claim
and for gaining reasonable accommodation at work or in rental
housing.
_________________________________________________________________
IF YOU ARE AFFECTED
and you think your employer is discriminating
* Get your condition diagnosed.
* If you work in a unionized workplace, consult with your union
about filing a grievance or taking legal action.
* Seek legal counsel. (Your union may be able to provide an
attorney or assistance through a legal clinic or make an
appropriate referral.)
* Join a support group.
________________________________________________________________
For further assistance, contact one of the worker health
resource groups or support groups in your area as well as other
organizations listed at the end of this fact sheet. These cases
are very difficult to win and can take a long time to resolve.
Similarly if you have been injured on the job, find an
attorney experienced with chemical exposure cases in the Workers'
Compensation system or personal injury claims. In such cases, you
will not need to pay your attorney upfront; instead your attorney
receives a percentage from the settlement if you win. It costs you
nothing if you lose your case.
To find an appropriate attorney for your case, consult your
union or one of the organizations listed below to obtain referrals.
Select your attorney carefully; remember, your attorney works for
you and you should feel comfortable with him or her.
ACCOMMODATING INDIVIDUALS WITH MCS IN THE WORKPLACE
These are some suggested ways to accommodate individuals with
MCS at work. They will not be effective in all cases. These
measures will also help prevent other workers from becoming
similarly disabled, and all reductions in toxic materials
contribute to the general health of the environment.
_________________________________________________________________
REASONABLE ACCOMMODATIONS
* Windows that open
* Well-ventilated space free of pollutants such as tobacco smoke,
pesticides, toxic and fragrant-laden cleaning products,
deodorizers, and exhaust fumes
* Selection of least toxic/allergenic building furnishings and
supplies
* "Least toxic" integrated pest management (IPM) using no sprayed
or volatile pesticides in and around buildings
* Pre-notification prior to painting, pesticide applications, and
renovations with provisions for alternative work arrangements
* Education of co-workers, management, and employers as to the
nature of the disability to avert stigma and harassment
* Schedule options so that affected people can work when fewer
co-workers are present, when ventilation is working at its peak,
or where the surroundings are least problematic
* Allow the option of working at home
_________________________________________________________________
MCS MAY BE A PREVENTABLE DISABILITY
People suffering from MCS have become a driving force for
improved indoor air quality and for the adoption of less toxic
housekeeping and building maintenance practices. Good indoor air
quality and substitution of less toxic materials boost morale and
productivity. A healthy workplace also lowers absenteeism and
injuries.
A safe working environment is always a worthwhile investment
for employers. Therefore, complaints about indoor air problems
must be taken seriously by employers, labor unions, regulatory
agencies and health care providers.
Consult your union or a "COSH" group (listed on the facing
page) for help in fighting for improved ventilation and the removal
of toxic products from your workplace.
FOR HELP AND MORE INFORMATION
National Center for Environmental Health Strategies (NCEHS), 1100
Rural Avenue, Voorhees, NJ 08043. (609) 429-5358. Mary Lamielle,
President. Provides information, referral, and advocacy. Tracks
scientific, legislative, legal, medical, and policy issues.
Newsletter "The Delicate Balance". Excellent information packets.
NY Coalition for Alternatives to Pesticides (NYCAP), PO Box 6005,
Albany, NY 12206-0005. (518) 426-8246. Tracy Frisch, Coordinator.
Focuses on pesticide hazards and safer alternatives. Provides
information, referral, workshops, and advocacy. "NYCAP News" is
its 40 page quarterly. Incident reporting project. Also hosts a
MCS support group in the Albany area. (See below.)
MCS Referral & Resources, 2326 Pickwick Road, Baltimore, MD 21207.
(410) 448-3319. Fax: (410) 448-3317. Albert Donnay, Executive
Director. New educational organization initiated by Grace Ziem,
MD, DPH, to assist people with MCS and MCS physicians, attorneys,
and other professionals. Distributes relevant articles and other
resources on prevention, diagnosis, accommodation, and treatment on
MCS and is launching an 800 number referral service.
The Environmental Health Network, PO Box 1155, Larkspur, CA 94977.
(415) 331-9804. Susan Molloy, editor. "The New Reactor" bimonthly
newsletter.Chemical Injury Information Network, PO Box 301, White
Sulphur Springs, MT 59645. (406) 547-3608. Cynthia Wilson. "Our
Toxic Times" monthly newsletter.
The Labor Institute, 853 Broadway, Room 2014, New York, NY 10012.
(212) 674-3322. Cydney Pullman. Produced "Multiple Chemical
Sensitivity: An Emerging Occupational Hazard" (28 min. video), $15,
and "Multiple Chemical Sensitivity at Work: A Training Workbook for
Working People" (95 pages, $3 for shipping) Order form APEX Press,
Publication Office, PO Box 337, Croton-on-Hudson, NY 109520. (914)
271-6500.
Center for Safety in the Arts, 5 Beekman Street, Suite 820, New
York, NY 10038. (212) 227-6220. Michael McCann, PhD, CIH,
Executive Director. Provides information, referral, workshops, and
factsheets on art hazards and safer substitutes and practices.
SELF HELP/SUPPORT GROUPS
NY City Human Ecology Action League (HEAL), c/o Joy Rothenberg, 265
Quentin Road, Brooklyn, NY 11223. (718) 339-4970 or (212)
517-5937. Patient support group. Meets monthly for presentations
about treatment techniques by doctors and others. Monthly
newsletter. Tapes of speakers available.
Human Ecology Action League (HEAL) of Central NY, 3773 Dorthy
Drive, Syracuse, NY 13215. (315) 592-7580 or (315) 392-0091.
Patient support group. Meets monthly for presentations on various
subjects, from treatments to environmental concerns. Bimonthly
newsletter. Tapes of speakers.
Injured Workers of NY (IWONY), 68 North Street, Camillus, NY 13031.
(315) 672-5814 or (315) 469-8737. Helps injured workers by
providing emotional support, information, guidance to self-help and
education. Advocates for more effective prevention, education and
protection in the workplace and reform of Workers' Compensation.
Chemical Sensitivity Support Group of the Capital District, c/o NY
Coalition for Alternatives to Pesticides (NYCAP), PO Box 6005,
Albany, NY 12206-0005. (518) 426-8246. Meets monthly for
presentations and discussion.
The E.I. Network, 9175 Tonawanda Creek Road, Clarence Center, NY
14032. (716) 741-4545. A western New York support group.
Human Ecology Action League (HEAL), PO Box 49126, Atlanta, GA
30359-1126. (404) 248-1898. Has local patient support group
chapters in many parts of the U.S. Also publishes the "The Human
Ecologist" quarterly.
WORKER HEALTH RESOURCES -- "COSH" GROUPS
For information on chemical pollutants in the workplace and help in
improving working conditions.
Central New York Council on Occupational Safety and Health
(CNYCOSH), 615 West Genesee Street, Syracuse, NY 13204. (315)
471-6187.
New York Committee on Occupational Safety and Health (NYCOSH), 275
Seventh Avenue, 8th floor, NY, NY 10001. (212) 627-3900.
Rochester Council on Occupational Safety and Health (ROCOSH), 797
Elmwood Avenue, NY 14620. (716) 244-0420.
Western New York Council on Occupational Safety and Health
(WNYCOSH), 50 Grider Street, Buffalo, NY 14215. (716) 897-2110.
Allegheny Council for Occupational Safety and Health (ALCOSH), 100
East Second Street, Suite 3, Jamestown, NY 14701. (716) 488-0720.
Eastern New York Council on Occupational Safety and Health
(ENYCOSH), 121 Erie Boulevard, Schenectady, NY 12305. (518)
372-4308.
Tompkins/Cortland Labor Coalition, 109 West State Street, Ithaca,
NY 14850. (607) 277-5670. (Not a "COSH" but runs an occupational
health education and information program.)
OCCUPATIONAL HEALTH CLINICS
For diagnosis and treatment of MCS, consider consulting with
medical staff at one of the occupational health clinics overseen by
the NYS Department of Health. The medical staff at these clinics
vary in their expertise in this area; selected clinics are listed
below. Each clinic is governed by a board of directors, which
generally welcome patient feedback in the form of a letter on
clinic services.
Self-help and support groups listed above may provide
additional referrals to physicians. (The American Academy of
Environmental Medicine, PO Box 16106, Denver, CO 80216, is a
professional association of environmental physicians, also known as
clinical ecologists. Provides regional listings of member
doctors.)
Eastern New York Occupational Health Program, 1201 Troy Schenectady
Road, Latham, NY 12110. (518) 783-1518 or (800) 638-0668 x4423.
Eckhardt Johanning, MD, and Chris Grosse, Education Director.
Satellite clinics in Poughkeepsie and Glen Falls.
Central New York Occupational Clinical Center, 6712 Brooklawn
Parkway, Suite 204, Syracuse, NY 13211-2195. (315) 432-8899.
Michael B. Lax, MD, MPH, Medical Director, has a lot of experience
with workers with chemical sensitivity. Satellite clinics in Utica
and Binghamton.
Mount Sinai-Irving J. Selikoff Occupational Health Clinical Center,
PO Box 1058, 1 Gustave L. Levy Place, NY, NY 10029. (212)
241-9738. Satellite clinic in Tarrytown (Westchester County).
Long Island Occupational and Environmental Medicine Clinic, 625
Belle Terre Road, Suite 207, Port Jefferson, NY 11777. (516)
476-2719.
GOVERNMENT AGENCIES
Contact the agencies appropriate to your situation.
NY City Department of Health, Susan Klitzman or Nancy Jeffery,
Environmental Epidemiology Unit, 125 Worth Street, Box 34C, NY, NY
10013. (212) 788-4396. To report MCS cases in NY City in order to
assess the extent of the problem in NY City.
NYS Department of Health Environmental and Occupational Health
hotline, 1-800-458-1158. Includes information about medical
reporting for the pesticide poisoning and heavy metals registry.
NYS Division of Human Rights -- Check in the blue pages of your
phone book under NYS Government Offices. For general information,
call (212) 870-8400.
Pennsylvania Human Rights Commission, Raymond Cartwright, 101 South
2nd Street, Room 303, Harrisburg, PA 17101. (717) 783-8274. Mr.
Cartwright worked on the landmark Pennsylvania case which granted
a chemically sensitive woman the right to reasonable accommodations
in her rented apartment.
US Department of Housing and Urban Development (HUD), Office of
Fair Housing and Equal Opportunity
- NY City Regional Office, Stanley Seidenfeld, director, (212)
264-1290.
- Buffalo Regional Office, Charles Martin, director, (716)
846-5785.
US Social Security Administration -- Check in the blue pages of
your phone book under US Government Offices, Health and Human
Services. For general information, call 1-800-772-1213.
Americans With Disabilities Act -- hotline, 1-800-USA-ABLE.
FOR FURTHER READING
Multiple Chemical Sensitivities, Board on Environmental Studies and
Toxicology, National Research Council. 1992. (195 pp.) National
Academy Press. An addendum to Biological Markers in
Immunotoxicology. $25 from NCEHS listed above (includes chapter 9
on MCS in Biological Markers book).
Chemical Exposures: Low Levels and High Stakes, Nicholas A.
Ashford, PhD, JD, and Claudia S. Miller, MD. 1991. (214 pp.
hardcover) Van Nostrand Reinhold, NY. Based on the Landmark New
Jersey Department of Health study. $18.95 (or $15 from NCEHS with
membership. See above.)
Multiple Chemical Sensitivity, Bette Hilleman, Chemical and
Engineering News, July 22, 1991, vol. 69, no. 29. Excellent
overview article. Available from NCEHS, 1100 Rural Avenue,
Voorhees, NJ 08043. (See above.)
Workers with Multiple Chemical Sensitivities, Mark R. Cullen, MD,
editor. Occupational Medicine, State of the Art Reviews, vol. 2,
no. 4, 1987. Hanley and Belfus, Philadelphia.
Informed Consent, PO Box 1984, Williston, ND 58802-1984. (701)
774-7760. Cindy Duehring, managing editor. New bimonthly magazine
which informs consumers about the potential hazards associated with
chemicals in consumer products and promotes safer alternatives for
healthier living.
Bibliography and Resource List from "No Place to Hide: Air
Pollution in the Great Indoors" broadcast of KPFK FM (Pacifica
Radio), 3729 Cahuenga Boulevard West, North Hollywood, CA 91604.
(818) 985-2711. (Also available from NYCAP. See above.)
Canary News, from the Chicago-area EI/MCS Support Group, 1404
Judson Avenue, Evanston, IL 60201. Excellent monthly newsletter.
Staying Well in a Toxic World: Understanding Environmental Illness,
Multiple Chemical Sensitivities, Chemical Injuries, and Sick
Building Syndrome, by Lynn Lawson (editor of Canary News). 1993.
The Noble Press, Chicago. $15.95.
-----------------------------------
This booklet was produced by the:
Multiple Chemical Sensitivity in the Workplace Task Force
c/o NY Coalition for Alternatives to Pesticides
33 Central Avenue
Albany NY 12210
(518) 426-8246
It was written by Tracy Frisch with the help of many task force
members. This booklet was made possible in part by a grant from
the NYS Department of Labor Occupational Safety and Health Training
and Education Program. Reprinting with permission is encouraged.
Contact the above address.
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