MCSA NEWS – Online Edition
MAY
2008, VOLUME 3, ISSUE 5
INSIDE THIS ISSUE:
Wood Smoke Trespass: A Violation of Property Rights
Scientific Review: Pesticides & Nerve Agents Sicken Gulf War
Veterans
Scientific Study: Heat Increases Toxicity
Scientific Study: Automobile Air Fresheners Produce Harmful
Gases in Your Vehicle
Scientific
Study: The Economy of Chronic Fatigue
Scientific Study: Everyday Products Influence Indoor Air
Quality
Scientific Study: Teenagers Increasingly Affected by Multiple Chemical Sensitivity
U.S. Governor Proclamations: MCS Awareness Month Signed Proclamations
Sal’s
Place: The Pain
of Disbelief
Inside
MCS America: MICAGO: Unified for a World Free of Harmful Chemicals
MCS Awareness Month - May 2008
Are
you familiar with multiple chemical sensitivity (MCS)? Chances are good that someone gave you this
article to help you understand and accommodate their medical condition.
MCS
is an environmental illness (EI) in which negative neurological, pulmonary,
cardiac, and rheumatic health effects, among others, are
experienced from exposure to common environmental chemicals, including
fragrances, cleaners, pesticides, and petrochemicals at concentrations that are
below regulatory toxicity thresholds normally deemed as safe.
The
MCS diagnosis is based on the following six criteria:
1. The
condition is chronic.
2. Symptoms
recur reproducibly with repeated chemical exposure.
3. Symptoms
recur in response to lower levels of chemicals than previously tolerated.
4. Symptoms
appear in response to multiple chemically unrelated substances.
5. Symptoms
improve or resolve when chemical incitants are removed.
6. Multiple
organ systems are affected.
Approximately
15% of the population report chemical sensitivity and just under half of those experience life-altering affects that lead to
disability. MCS affects all ages and
both genders.
Products
that people with MCS experience toxic reactions to include ANY quantity of
exposures to pesticides, secondhand smoke, alcohol, fresh paint, scented
products and perfumes, candles, fragrances, food preservatives, flavor
enhancers, aerosols, tap water, cosmetics, personal care products, new carpets,
petroleum products, formaldehyde, outdoor pollutants, newspaper ink, cleaning
compounds, printing and office products, and other synthetically derived
chemicals.
Some
also react to natural products that are highly concentrated such as essential
oils and natural orange cleaners due to the high volatile organic compound and
pesticide concentrations.
Symptoms
can range from minor annoyances, such as headache and nausea, to
life-threatening respiratory distress.
The most debilitating symptoms are neurological and include cognitive
impairment, brain fog, and difficulty concentrating.
The
main medical treatment for MCS is a home free of toxic chemical and strict
avoidance of exposure to any and all of the chemicals mentioned above, as well
as any products which contain them.
Below
are the most commonly asked questions about MCS.
Can't you take allergy pills?
Sometimes
the word allergy is used to describe MCS because it’s easier to
understand. However, MCS is not an
allergy or inappropriate response to a substance that can be treated with
allergy medications.
Isn’t MCS just an everyday malady
sufferers just make too much of?
No. In fact, MCS often leads to total
disability. Sufferers experience
functional impairments that can affect speech, concentration, and
coordination. Some have reported
seizures activity and life-threatening respiratory reactions. These effects are certainly not everyday
maladies.
Aren’t people with MCS just antisocial?
No. People with MCS report feeling cut off from
social activities. It’s the chemical and
fragrance exposures that accompany people and events that cause illness, which
can last for hours or days afterwards and must be avoided. Making reasonable accommodations through
fragrance free activities helps make social encounters accessible.
Why do people with MCS want to control
what I use and wear?
MCS
is not about controlling what you use or wear, though the use of safer products
is beneficial to you too. In fact,
people with MCS suffer functional impairment from exposures that, in some
cases, may cause irreversible damage.
Their requests for accommodation in the shared environment allow them to
participate much like a wheel chair ramp allows a paraplegic access to events. Neither accommodation is about “control”, but
rather “accessibility”.
Do people with MCS dislike smells?
No. People with MCS have adverse health reactions
to chemicals. Often chemicals are used
to create smells, though chemicals without any discernable odor also produce
reactions. There are as many as 5,000
fragrance chemicals and 95% of them are toxic petrochemicals.
Is MCS a conditioned response?
No. People with MCS are not conditioned to have
symptoms, though they are often hyper vigilant when it comes to following the
number one recommendation for treating MCS, which is avoiding all chemical
exposure.
Aren't MCSers just
psychosomatic?
No. Studies show reduced blood flow to the brain when under perfume exposure in
MCS subjects. Other clinically relevant test findings include altered mineral
transport/absorption and reduced capacity for detoxification, among many other
biological findings that account for their symptoms.
Isn't MCS caused by anxiety?
No. MCS symptoms are triggered by toxic chemical exposure. People with MCS
often have slow hepatic detoxification as a result of chemical injury. Because
they don´t eliminate toxicants effectively, small
amounts of chemicals affect them severely. Cellular inflammation is increased
when they are exposed to chemicals, leading to increased symptoms.
Why are you wearing that mask?
People with MCS may wear a mask or respirator to protect themselves from
exposures and allow them greater accessibility to public places. They are not
contagious. A mask is not an end all be all solution though. Fragrances, like
cigarette smoke, leave residue on skin, hair, and clothing, where they are also
absorbed into the body.
Could I catch MCS?
MCs is not a communicable disease. You cannot catch it
from someone who has it. However, many chemicals can damage genes and the
central nervous system, potentially leading to MCS. Switching to safer products
and avoiding chemical exposure will reduce the chances of developing MCS.
How come I don´t react to the same things that
someone with MCS reacts to?
Scientists are still researching MCS. Chemicals can damage genes that regulate
hepatic detoxification. Once they are damaged, toxicants build up in the body
to a point where toxicity occurs. It is likely this has not happened to you.
However, it could happen to anyone. Avoiding unnecessary exposure to
fragrances, pesticides, solvents, and carbon monoxide will greatly reduce the
chances of developing MCS.
What can I do to accommodate someone with MCS?
Accommodating someone with MCS is not difficult. The individual with MCS will
know what they can and can´t tolerate and provide
detailed instructions. Ask what their needs are and listen carefully. Take what
they tell you seriously, even if it seems far reached.
The worst thing you can do is to challenge the individual. MCS is a devastating
condition that permanently alters the lives and livelihoods of it´s sufferers. Compassion and consideration will eliminate
any problems down the road. Assist the person with requests for reasonable
accommodations in public places.
What if I did everything and they are still having difficulties?
If you have done everything asked and there are still having difficulties,
chances are there is something both of you missed. Be patient and open minded.
Help the person search out the problem and work on a solution with them. When
the needs of a person with MCS are met, the condition takes a back seat to your
personal, professional, or academic relationship. It may take some trial and
error to reach this point. Patience is required.
What should I
avoid wearing or using when I´m going to visit with
someone who has MCS?
Remove all air fresheners, cleaning chemicals, and other scented items, such as
candles from the room. Simply placing them in a cupboard is insufficient. In
their place, use baking soda and vinegar, or whatever the person with MCS
suggests.
It is usually helpful to have a set of clothes reserved only for time you spend
with the individual. Since laundry product fragrances are nearly impossible to
remove from clothing, obtaining a new outfit for this purpose only and wash it
in baking soda or unscented detergent. Usually the person with MCS is willing
to do the laundering if you visit them frequently.
Family members can help by showering when they return home to remove residues
of perfume, smoke, and other chemicals that remain on clothing, hair, and skin
from public places.
What can I do at work or in the classroom to assist?
Avoid the use of perfumes, fragrances, air fresheners, and scented personal
care products. Request that the students and staff use unscented products. The
individual with MCS may be willing to suggest a product or provide some. Do not
use cleaners around the individual. Schedule cleaning when
the person is not there. Switch to less toxic products. Again, the
individual will likely be willing to make some recommendations.
How can I assist a homebound person with MCS?
Follow the above recommendations for visiting someone with MCS. Often, the
homebound need help with basic things like shopping and medical appointments.
After an adjustment period, the above recommendations will become automatic and
effortless. Both you and the individual with MCS can enjoy a productive
relationship and better health.
Challenges Faced by Students with MCS (Multiple Chemical Sensitivities) in a Traditional School Environment
Those
who suffer from MCS (Multiple Chemical Sensitivities) face a number of unique
challenges in the traditional school setting.
“Eighty-nine clinicians and researchers with extensive experience” in
MCS, reached consensus on a definition of MCS as “[1] a chronic condition [2]
with symptoms that recur reproducibly, [3] in response to low levels of
exposure [4] to multiple unrelated chemicals and [5] improve or resolve when
incitants are removed” [6] “Symptoms involve multiple organ systems”
(Signatories to the 1999 Consensus on Multiple Chemical Sensitivities,
1999).
Researchers
who conducted a study of the American population found that 11.2% of
respondents experienced chemical hypersensitivity with 66.7% of those
describing their symptoms as severe or moderately severe. MCS was reported by all races, ethnicities,
ages and educational levels (Caress & Steinemann,
2004). Some people have MCS since birth, while others develop it
later. The age of onset of hypersensitivity In one study was found to be:
before 20 years of age, 32.4%; 21-35 years of age, 35.2%; 36-50 years of age,
14.8%; and after 50 years of age, 9.7% (Caress & Steinemann,
2003).
A
wide range of seemingly unrelated substances can cause reactions from mild to
life threatening. Typical substances mentioned include: perfumes and
fragrances; air fresheners; fresh paint; pesticides; hair spray; Lysol;
Chlorine; printed materials such as books, magazines, newspapers and phone
directories; felt tip markers; formaldehyde; auto exhaust – gasoline and
diesel; dry cleaning residual solution; fabric softener; shampoo and
conditioner; laundry soap; hand soap; hand moisturizer; natural gas, tobacco
smoke; chimney smoke; natural gas; nail polish and remover; phenol; new vinyl
plastic; rubber; fresh asphalt and moth balls. Many MCS sufferers also have
traditional allergies and can be very sensitive to mold, pollen, pet dander,
dust mites and certain foods. Some people have a dramatic reaction to EMF
(Electro-magnetic Fields) (Gibson, 2007).
There
are approximately 75.78 million Americans enrolled in school. (
Furthermore,
there are approximately 6.2 million teachers in
Types of challenges faced by MCS
sufferers in a traditional school setting as stated by survey respondents
As
shown in Appendix A, 88% of survey respondents reported experiencing mind fog
due to reactions with chemicals during class, while trying to take an exam or
while trying to study; 69% reported anxiety due to feelings of isolation due to
having the MCS condition; 63% reported having trouble getting a good night’s
sleep due to reactions; 44% reported reactions to carrying printed materials;
and 38% reported reactions in classrooms to printed materials.
In
a follow up questionnaire, respondents commented on specific school related
situations described below.
In
physical education classes the chronic fatigue that is so common in MCS
sufferers was a factor. They are usually too weak to perform as well as
their bodies would were it not for their condition. Many feel that their
bodies are letting them down. Light headedness can cause dizziness and
poor balance, a dangerous situation in some gymnastic activities such as rope
climbing or balance beams, therefore it is recommended that students be allowed
to refuse participation without penalty. Physical Education or
competition sports often leave MCS sufferers frustrated because they know they
should perform much better physically. MCS sufferers usually don’t even
know the name of their condition or why it is sabotaging their efforts.
They can’t quite grasp what to do about it or how to explain it to their
classmates and teachers. Furthermore, the stress caused by competing in
sports or even just wanting to do well, is not handled well by MCS sufferers
for physiological reasons. They find their bodies just get much sicker
instead of ramping up for the demands of the sport (Pall, 2007).
Just
carrying or using printed materials is problematic for MCS sufferers. MCS
sufferers are unable to be around printed materials without reacting to the
volatile organic chemicals in the ink. Just having a book or other
printed item near them – even in the same room - for reading in class, doing
homework, or in the case of teachers, for the preparation of lessons, will be
difficult. Respondents stated that
libraries are usually impossible for MCS sufferers. The amount of printed
materials in the building will be a major problem. Any carpet or dust in the building will
typically also cause reactions. Furthermore, the more crowded the library
is, the worse it gets for MCS sufferers due to the perfume and other substances
on other people and their clothing (Gibson, 2007)
Even
a nurse’s station is hazardous. For a MCS sufferer to get relief they
often need to find a “safe room” or go outdoors. A “safe room” is usually
well dusted, with filtered air and with all materials that can cause reactions
removed permanently from the room. A MCS sufferer will most certainly
find themselves visiting the nurse’s station for assistance (in schools that
have a nurse’s station). Unfortunately, school nurses are rarely aware of
MCS or how to help a MCS sufferer. The nurse’s station is not likely to
be a safe room so the MCS sufferer will probably react to things in the nurse’s
station also. MCS sufferers usually do not know what they have.
They might think its just allergies or a cold. Because they will already
be reacting to things when they go there, they might not understand that the
nurse’s station might be causing additional reactions (Gibson, 2007; Lipson,
2001).
A
bus ride to school or on a field trip can make them sick. MCS sufferers
are especially reactive to diesel fumes. Survey respondents stated that
enough of the exhaust fumes would get inside the bus to cause reactions.
Also, due to close proximity of others, perfumes and other substances on the
other riders and their clothing make it difficult for MCS sufferers to use a
bus (Gibson, 2007).
Giving
an oral presentation is often embarrassing, frustrating and can actually make
them sicker, respondents stated. MCS Sufferers often find that they are
exhausted; their minds fogged up, their voices wheezing and hoarse. Often
they have just been reacting to something or may be reacting to something when
called to give their presentation.
Furthermore, the extra stress of being in front of others just
intensifies their condition (Lipson, 2001; Pall, 2007). MCS sufferers have difficulty with deadlines
because they frequently must stop and recover from a reaction to some
substance. They never know when they will have a significant reaction to
something. They are only able to due so
much in a day due to fatigue. They need to be able to set their own
progress rate and turn in work as they are able. This is true even if
they are in a controlled environment. They will often need a special
accommodation of additional time to complete an assignment. Projects
requiring students to use a library, clip articles from printed materials or
just read printed materials may not be achievable (Gibson, 2007; Lipson, 2001;
Pall, 2007).
MCS
suffers may have a reaction to something in the test facility or may have had a
reaction to something just prior to arriving for a test. Due to fatigue,
too many tests in one day will be too much for them. Too long a test will
be too much for them. Special accommodation of additional test taking
attempts, rescheduling of tests and special rooms to take tests may be
needed. Tests that use printed materials may not be useable (Gibson,
2007).
Consequences of suffering with MCS in a
traditional school setting
As
indicated in Appendix B, 81% of survey respondents stated that their MCS
condition is either often, severely or completely affects their overall
academic performance adversely; 81% reported they had to leave a classroom due
to reactions due to their MCS condition; and 63% reported that they had to drop
out of school due to their MCS condition.
Conclusion
MCS
occurs in about 11.2% of the population with 66.7% of those describing their
symptoms as severe or moderately severe. All one hundred percent of MCS
sufferers who participated in the survey reported having problems in a
traditional school setting due to their MCS condition (See Appendix A). Sixty-three percent of students and teachers
responding stated that they had to drop out of school due to their condition
(See Appendix B). Since this is the first research to study this topic
and the sample size of the survey was relatively small, additional research
should be conducted to confirm the thesis.
The prevalence of MCS among students and teachers is significant and
their condition greatly affects their ability to perform in a traditional
school setting.
Copyright
© Kenneth W. Brotman
All
Rights Reserved
Reprinted
with Permission
References
Caress, S. M. & Steinemann, A. C. (2004). A National Population Study
of the Prevalence of Multiple Chemical Sensitivity. Archives of
Environmental Health, 59(6), 300-305. Retrieved November 23, 2007, from EBSCO
database.
Caress, S. M. & Steinemann, A. C. (2003). A Review of a Two-Phase
Population Study of Multiple Chemical Sensitivities. Environmental
Medicine, 111(12), 1490-1497. Retrieved November 23, 2007, from EBSCO
database.
Gibson, P (2007). Understanding
& Accommodating People with Multiple Chemical Sensitivity in Independent
Living. Retrieved December 30, 2007 from http://www.ilru.org/html/publications/bookshelf/MCS.html
Lipson, J. G. (2001). We are
the canaries: Self-care in multiple chemical sensitivity sufferers.
Qualitative Health Research, 11(1), 103-116. Retrieved November 23, 2007,
from EBSCO database.
Pall, M (2007). Explaining
“unexplained Illnesses”: Disease paradigm for chronic fatigue syndrome,
multiple chemical sensitivity, fibromyalgia, post-traumatic stress disorder,
gulf war syndrome, and others.
Signatories to the 1999
Consensus on Multiple Chemical Sensitivities (1999). Multiple Chemical
Sensitivity: A 1999 Consensus. Archives of Environmental Health, May/June 1999,
54(3), 147-149. Retrieved November 23, 2007 from EBSCO database.
Wood Smoke Trespass
A Violation of Property Rights
If
a neighbor experimented with a new invention known to spew mercury, arsenic,
lead, formaldehyde, and other dangerous toxicants into your yard, surely your
local air regulators would be able to shut down the operation immediately. Wouldn’t they? If these noxious fumes
entered your yard, home, and lungs uninvited, it would be a clear violation of
your property rights as a taxpayer. What if your neighborhood began using
them by the droves? Imagine the consequences of these compounded toxic
fumes, if allowed to continue unabated, magnifying the chances of asthma
attacks, heart attacks, reproductive birth defects, and sudden infant death
syndrome. Wood burning fireplaces, outdoor fire pits and their ilk, along
with the proliferation of wood burning restaurants, are the culprits.
Their smoke and carbon soot are polluting private property and entire
neighborhoods to an alarming degree in urban areas across the nation.
More Than a Nuisance
Wood
smoke violates nuisance ordinances and air quality standards as it fans out in
capricious and unpredictable plumes affecting property owners in entire urban
areas just like a massive invasion of tobacco smoke, only more concentrated.
Wood smoke is a mobile source of fine particulate pollution that spews
many of the same cancer-causing toxicants into the air that are in cigarette
smoke. Even low level exposures take their toll—especially on children
and others with asthma The American Lung Association cites that wood
smoke is a trigger for asthma attacks and asthma can be life threatening.
Wood Smoke Devalues Property
We
can tell our house guests that smoking isn’t allowed in our homes. We
should be able to declare our own property a smoke-free zone outdoors! A person’s right to burn wood should stop
when it interferes with another’s right to breathe clean air on their
property. Wood smoke from a neighbor or
neighboring business could devalue your property because frequent smoke is a
“material fact” that could negatively influence a buyer’s interest in your
property.
Wood Smoke’s Fine Particulates
Contribute to Climate Change
New
NASA satellite studies demonstrate that wood smoke’s fine particulates and
“black carbon soot” are major contributors to global warming - even more than
greenhouse gases. If this isn’t a wake-up call to quell polluting for
fun, what else would convince us to stop burning?
Don’t Put Up With Wood Smoke Trespass!
Contact
your city council and state legislators. Many states are beginning to
regulate wood burning, and also have bans in place on bad air days. We
must speak up or pay a high price.
Contact Us to Connect With Others Who
Share Your Concerns
Contact
info@takebacktheair.com
Julie Mellum
Scientific Review
Pesticides & Nerve Agents Sicken Gulf War Veterans
Mounting
evidence has shown that exposure to pesticides and nerve agents, such as
organophosphate and carbamate acetylcholinesterase
inhibitors (AChEis), is linked to Gulf War
Illness.
Scientists
at Department of Medicine,
Gulf
War Illness is a syndrome reported by combat veterans of the 1991 Persian Gulf
War.
Symptoms
include chronic fatigue, fibromyalgia, indigestion, memory problems, muscular
aches and pains, headache, dizziness, loss of balance, shortness of breath, and
skin irritation.
An increase
of fibromyalgia, chronic fatigue syndrome, eczema, and dyspepsia has been
shown in deployed veterans when compared to non-deployed veterans (Eisen et al, 2005). This would indicate that Gulf War
Illness is correlated to deployment.
Deployed
veterans may have been exposed to nerve gas and pesticides in the course of
duty.
Scientific
evidence has linked occupational exposure to these agents to chronic health
symptoms that mirror those of Gulf War Illness.
Gulf
War Illness is also linked to less efficient detoxification of these
agents. Lower amounts of detoxifying
enzymes and/or certain genotypes precipitate slower detoxification.
Gulf
War Illness is very similar to fibromyalgia, chronic fatigue syndrome, and
multiple chemical sensitivity.
Pesticides have also been linked to these illnesses in various
studies. This would indicate that Gulf
War Illness, fibromyalgia, chronic fatigue syndrome, and multiple chemical
sensitivity may share a common cause… pesticides.
Pesticides
are poorly regulated and often applied without regard for label instructions,
which can lead to overexposure and ultimately ill health effects. There are many natural alternatives to
harmful pesticides including keeping things neat and clean, employing
integrative pest control, and choosing less toxic substances to eliminate
pests.
Triclosan,
also a registered pesticide, is an ingredient in common hand sanitizers which
have claimed widespread use and increase exposure to this harmful
chemical. Simple soap and water kills
the same amount of germs without Triclosan.
The
best cure is prevention.
References
Eisen
SA, Kang HK, Murphy FM, Blanchard MS, Reda DJ, Henderson
WG, Toomey R, Jackson LW, Alpern R, Parks BJ, Klimas N, Hall C, Pak HS, Hunter J, Karlinsky
J, Battistone MJ, Lyons MJ. Gulf War
veterans' health: medical evaluation of a
Golomb,
BA. Acetylcholinesterase
inhibitors and Gulf War illnesses. Proc.
Natl. Acad. Sci. March 10, 2008
Scientific Studies
Heat Increases Toxicity
Core
body temperature responses to high ambient temperatures and/or toxicant
exposure can have a profound impact on the ability of an organism to survive
the exposure according to Lisa R. Leon at the US Army Research Institute of
Environmental Medicine.
“Thermal
heat responses may exacerbate chemical toxicity,” says
There
are many environmental toxicants in the air from pollution, smoke, fragrances,
pesticides, and other toxicants. These
toxicants enter the body more easily in high heat.
During
perspiration, there is an increase in blood flow to the skin, allowing for more
rapid absorption of toxicants into the blood.
Hypothermia
is an inborn thermoregulatory survival strategy rodents use to diminish the
effect of severe environmental insults.
Hypothermia is protective against increased absorption of environmental
contaminants which is minimized at reduced core temperatures.
Sauna
therapy is often used to increase detoxification via the skin using the same
principal. When the pores open and blood
flow increases to the skin, toxicants may be eliminated from within the
body.
However,
if the environment is polluted, this may also increase absorption of toxicants
from the environment. It is essential to
ensure the lowest possible contaminates when taking a sauna bath.
Individuals
with multiple chemical sensitivity and other environmental illnesses may find
cooler temperatures lessen absorption of chemicals in the environment. Those without any of these illnesses may also
benefit from cooler temperatures to limit exposures which may lead to
environmental illness.
Reference
Scientific Study
Automobile Air Fresheners Produce Harmful Gases in Your Vehicle
Society
expects automobiles, being rather confined spaces, to smell good. Often this is misinterpreted as smelling
fragrant with an automobile air freshener that covers up odors rather than
actually cleaning and airing out the vehicle.
Scientists
at the Department of Civil and Environmental Engineering in
When
subjected to ozone-initiated oxidation, the chemicals in the air freshener
formed highly toxic compounds.
The
study observed the formation of irritating ultra-fine particles and gaseous
compounds, including formaldehyde, acetaldehyde, acrolein,
acetone, and propionaldehyde.
This
study provided an insight on the potential exposure of passengers and small
children in the confined space of an automobile.
Air
fresheners don’t remove odors. On the
contrary, air fresheners cover up odors with more odors, albeit a supposedly
more pleasant odor.
Pets
and small children are made ill by these toxicants much easier than
adults. Exposure may result in
irritability, headache, anxiety, fatigue, respiratory problems, asthma, and
other seemingly nonspecific symptoms.
Children may develop behavioral problems.
Simple
alternatives to the use of air fresheners include keeping a vehicle clean,
opening the windows to allow for air circulations, smoking outside the vehicle,
and using alternatives to chemical air fresheners for a pleasant aroma. Some ideas for a pleasant aroma include a
sachet of coffee beans or your favorite dried flower petals.
Whatever
the alternative, clean is in and air fresheners are out.
Reference
Lamorena
RB, Lee W. Influence of ozone
concentration and temperature on ultra-fine particle and gaseous volatile
organic compound formations generated during the ozone-initiated reactions with
emitted terpenes from a car air freshener. Hazard Mater. 2008 Feb 7
Scientific Study
The Economy of Chronic Fatigue
If finances tire you,
consider what fatigue does to finances.
Approximately 800,000 adults
in the
The economic impact of an
illness is generally broken down into direct and indirect costs.
Direct costs include the
medical care, prescriptions, and other expenses for ambulatory support. Indirect costs include the loss of work or
reduced work due to disability and other costs.
The annual cost of direct
expenses related to CFS is estimated at $2,342 - $8,675 per patient, or between
$2 - $7 billion in
Jason and his colleagues
state, “These cost estimates in combination with high prevalence rates are some
of the reasons that more research into the cause, effective diagnosis, and
treatment are necessary.”
Indeed that is the
case. For both patients and society, CFS
has a substantial economic impact. In
addition to the economic impact, utilization of service providers is often high
which puts a burden on the medical care system.
It is indeed crucial that
more research be conducted. It is also
crucial that service providers familiarize themselves with CFS and work towards
better diagnoses. The longer a patient
goes without a proper diagnosis, the larger the burden on the medical system,
society, and the patient. Once a
diagnosis is made, treatment can ensue and repeated consults will be
reduced.
It is therefore most crucial
that research and proper diagnosis be addressed. Simply putting off a fatigued patient without
adequate testing hurts everyone involved.
It is essential to go beyond
the medical mantra of “first do no harm” and into a new realm of “first do some
good”.
Reference
Scientific Studies
Everyday Products Influence Indoor Air Quality
Toshiko
Tanaka-Kagawa and fellow researchers in
A
volatile organic compound (VOC) is any organic compound which evaporates
readily to the atmosphere. Long after
manufacture, these chemicals and petrochemicals emit vapors.
Some
typical products which emit VOC’s in the home include
adhesives, air fresheners, carpets, cleaning chemicals, cosmetics, gasoline,
moth balls, newspaper, paints/varnishes, photocopying, pressed wood furniture,
sealing caulks, solvents, upholstery, and vinyl floors/curtains/tablecloths.
Many
VOCs are harmful, contributing to smog and certain
health problems including asthma, allergies, and multiple chemical sensitivity
(MCS). Persons with respiratory
problems, young children, and the elderly may be more susceptible to illness
from VOC exposure.
Tablecloths
and gloves, both of made of polyvinyl chloride, show the highest VOC emission
rates. Jigsaw puzzles and play mats
added more VOC’s to indoor air than other toys and
stationary.
Printed
materials emit toxic compounds, including toluene, xylenes
and ethylbenzene.
VOCs such as benzene, toluene, ethylbenzene, and xylene are
classified as hazardous air pollutants by the U.S. EPA.
Symptoms
of VOC exposure include eye irritation / watering, nose irritation, throat
irritation, headaches, nausea/vomiting, dizziness, asthma, and in more severe
cases, liver, kidney, and central nervous system damage.
Tanaka-Kagawa
and colleagues state, “Identification and removal/replacement of sources of
indoor air pollutants, such as volatile organic compounds (VOCs)
and aldehydes, are most effective measures to reduce
indoor chemical exposures.”
This
means using cloth tablecloths, safer toys, and storing printed materials out of
the living area. In general, plastics,
vinyl, and rubbers should be avoided.
New carpeting, new paint, new furniture, chemicals stored in the home,
idling automobiles, adhesives, new plastics or electronic devices all emit VOC’s and should be minimized.
Other ways
to reduce VOCs is to open doors and windows
and use fans to increase ventilation, keep temperatures and humidity lower
to limit offgassing, use no-VOC sealers to seal offgassing items, purchase an air filter and non-toxic
cleaning products, and dispose of old paints or other chemicals stored in the
home or garage.
A
professional indoor air quality investigator or industrial hygienist can be
consulted regarding VOC levels and what may be contributing most if ill health
is present.
Reference
Tanaka-Kagawa
T, Jinno H, Obama T, Miyagawa M, Yoshikawa J, Komatsu K, Tokunaga H. Evaluation of volatile organic compounds (VOCs) emitted from household products by small chamber test
method. Kokuritsu
Iyakuhin Shokuhin Eisei Kenkyusho Hokoku. 2007;(125):79-85.
Scientific Studies
Teenagers Increasingly Affected by Multiple Chemical Sensitivity
Multiple
chemical sensitivity (MCS) is increasing in prevalence. It is a condition that knows no bounds,
affecting every age, every ethnicity, and both genders.
People
with multiple chemical sensitivity experience negative health effects when
exposed to low levels of commonly encountered chemicals normally deemed as safe. These health effects are reproducible with
the same exposure and are alleviated when the exposure ceases.
Multiple
organ systems are affected by low levels of chemicals in this population. The most debilitating of these symptoms are
neurological and include functional impairment, cognitive difficulty, and
general dysfunction of the central nervous system.
MCS
is a disabling condition in that chemicals such as perfume, air freshener,
cleaning products, laundry products, vehicle exhaust, new carpets, newspapers,
and other commonly encountered substances create an invisible barrier to access
for its victims. Further, barriers are
created by lack of understanding from friends, family, and medical
practitioners.
The
overall prevalence of reported chemical sensitivity in the population is
approximately 15% with nearly half of those diagnosed by a physician. Many are disabled by MCS, unable to access
schools, employment, shopping, and social events. The youngest reported chemical sensitivity
was found in a toddler.
Andersson
and colleagues, researchers in
Risk
factors for developing MCS, according to researchers, include noise sensitivity
and female gender.
Andersson
asserts, “chemical sensitivity problems seem to be present also in teenagers,
although less so than in adults.
Furthermore, chemical sensitivity seems to be related to other
environmental sensitivities.”
The
increasing prevalence of MCS in younger people is a grave concern. In general, the health of children has
declined dramatically since 1980 and has been correlated with the sudden
increases in vaccinations, industrial pollution, and chemical disinfectants
such as hand sanitizer, aerosol sprays, and other cleaning agents, which all
contain neurotoxic compounds. The result
has been a rise in asthma, sudden infant death, attention deficit hyperactivity
disorder, and now, MCS.
Our
young people need our attention now, for they are the future generation. As a responsible society, it is crucial that
we quickly examine the impact vaccinations, industrial pollution, and chemicals
have on children. Without our children,
we have no future.
Reference
Andersson
L, Johansson A, Millqvist E, Nordin
S, Bende M. Prevalence and risk factors for
chemical sensitivity and sensory hyperreactivity in
teenagers. Int J Hyg
Environ Health. 2008 Apr 8.
U.S. Governor Proclamations for MCS Awareness Month
Proclamations signed last
month may be viewed on the pages that follow.
All proclamations may be
viewed and downloaded at: http://mcs-america.org/index_files/proclamations.htm.
April Signatures
March Signatures
February Signatures
January Signatures
Sal’s Place
The Pain of Disbelief
Imagine
for a moment that you suddenly have an excruciating stomach pain. Doubled over, you head to the doctor’s office
and explain what you are feeling. After
a few questions, the doctor busily hurries off to his next patient after
telling you to wait it out and see what happens.
You
wait two days and the pain continues and sharpens. So you return to the doctor and are told to
take some aspirin. Insisting something
is seriously wrong, you are given the “look” that says, “I have real patients
to help. Go see a psych.”
You
call another doctor and say it’s an emergency and are told it will be a 4 month
wait and that you should go to the ER if it’s urgent. The ER tells you to go see your regular
doctor after running a few tests and finding nothing unusual.
Relieved
to have finally had some tests to rule out anything serious, you return home to
ongoing pain. Doctor after doctor, none
are able to tell you why you are in pain.
Most treat you with disdain and don’t bother to run any tests. One told you to get help for your
depression. Depression? How is this pain “depression”? “Do you feel anxious all the time?” he asks.
Soon
you start going home sick from work because the pain is so intense that it’s
all you can think about. Your boss finds
you in the restroom doubled over in tears and sends you home, saying not to
return until you are better. “Maybe you
need a vacation. You seem stressed.” Vacation?
“How’s that going to diagnose or cure my illness?” you ask. Your boss responds with a chastising look.
Aspirin
helps a bit, though it’s not strong enough and wears off to quickly, leaving
you tired and sleepy. Life can’t go on
like this. What’s wrong with you? Why won’t the doctors do more tests and try
to help?
Now
you are becoming depressed because no one will listen. Well, maybe not depressed but
despondent. Every time you mention your
pain as you try to sort things out, do research, and make more medical
appointments to find a solution, you are chastised by your family. “You really need get help for this obsession
with your health,” says your spouse. Obsession?
Now
you scream in frustration and anger. You
just want your life back the way it was!
You are doing everything you can to find out what’s wrong and get
treatment and everyone around you calls you “anxious”, “depressed”, “stressed”,
and “obsessed”. They think it’s all in
your head. "I just wish someone
would believe me!"
All
too late and years later, perhaps after years of useless psychotherapy, you
finally get a real diagnosis. You’ve had
colon cancer all along. But it’s not
operable anymore because it was found too late.
Why didn’t anyone listen? Why
must you pay with your life?
Fibromyalgia
(FM) is a condition characterized by widespread pain, chronic fatigue syndrome
(CFS) by debilitating fatigue, and multiple chemical sensitivity (MCS) by
exquisite sensitivity to everyday chemicals and fragrances. Few clinically relevant test findings are
available to make a clear diagnosis. The
doctor may say there’s no science or study to support it, yet you feel the
pain, fatigue, and disabling reactions.
Or you could have an accepted condition like cancer that has simply gone
undiagnosed because you were too young, too athletic, or too disheveled from
your agony to appear credible to your doctors.
Not
surprisingly, nursing researchers Clarke and Iphofen
found that being disbelieved left patients with feelings of anger, frustration,
isolation, depression, and eventually thoughts of suicide. Just imagine what they will say when they
find you took your own life out of desperation in painful isolation and
alienation? “I knew it was in his head
all along.”
Clarke
and Iphofen say, “The effect of believing patients’
account of a chronic pain experience cannot be underestimated. In this small study, patients expressed
gratitude, relief and even surprise when they find their pain experiences are
accepted at face value without having to 'prove' its existence.”
Further,
“This apparent need to feel that their pain story is credible appears to be
unique to chronic pain patients. Having
healthcare professionals believe the pain experience helps to alleviate its
negativity by empowering patients to move forward with management, rather than
endlessly seeking a cure.”
The
study concludes that health professionals need to believe what their patients
report, and that extends to family and friends.
If the problem is never acknowledged, a solution cannot be found. Acknowledging the problem is the first step
to move toward a solution in a positive and forward manner. To do otherwise is to ensure eventual demise.
Believe
your patients. Believe your loved
ones. Encourage the ill and help them to
find out what’s wrong and what they can do to treat it. Come up with joint strategies for
living.
Counseling
can help if you are having trouble coping with your loved one’s pain. There is still room in the relationship, for
better or for worse, to live life to the fullest. We are not defined by our pain. We are defined by who we are, what we do, and
how we live. We have but to be open, to
embrace challenges, and forge forward!
Be
well!
Reference
Clarke,
K.A., Iphofen, R. (2008). The effects of
failing to believe patients’ experience of chronic pain. Nursing Times;
104: 8, 30-31.
Inside MCS America
MICAGO: Unified for a World Free of Harmful Chemicals
MICAGO
is an acronym for the MCS International Coalition of Allied Groups and
Organizations, an initiative for unity in the pursuit of a world free of
harmful chemicals led by Gordon D. McHendry, founder
and campaign coordinator for MCS International.
The
MICAGO Initiative was initially launched by founding members in February of
2006. MCS America was founded in June of
2006 and has been a member of MICAGO since its inception. MICAGO is now up and running strong with
fourteen member organizations.
MICAGO
members stand unified on the MICAGO Declaration, which is reprinted on the next
page.
McHendry
states that MICAGO “is for those who want to be counted in a stand-up public
display of unity and support for the MICAGO Declaration's clear demand for the
honoring of basic human rights regarding the reckless proliferation of toxic,
synthetic chemicals in the world today, and their inevitable destructive impact
on human, animal and environmental health."
The
beauty of MICAGO is the respect members have for differences of opinion.
There are no binding commitments and members may opt in or out of individual
initiatives. So while members
may resonate with and support one initiative, they are not required
to be involved in initiatives for which they have dissimilar goals.
McHendry
asserts, “The MICAGO Declaration, and the coalition that are forming a new
oasis of unity and positivity around it, offers a
golden and much needed opportunity for - and a viable means of - transcending
that hostile and cause-defeating desert of seemingly never ending disputes that
all to often plague substantial sections within the international community of
the chemically injured (by whatever name).”
He
goes on to state, “The chemically injured EVERYWHERE (for the problem is an
international one) are hereby invited to make of this unique, win-win offer -
of "a new oasis of unity" - a place where ALL personal and
"Cause" related issues can (be) left, even if only for a while, at
this new community door on the way in.
They are invited to make of it a place were it truly can be said that
"Here, in this place at least, I voluntarily suspend ALL my
"issues" in the service of a much greater good; Unity of common
cause! That here at least there shall be
no dragons.”
No
“dragons” indeed. It takes organizations
with great professional respect for one another to participate in this
outstanding coalition. MCS America is
proud to be a member of MICAGO.
Organizations
interested in joining MICAGO may
obtain more information at: http://mcs-international.org/, by
clicking on the MICAGO link in the navigation bar at the top or bottom of the
page.
The
MICAGO Declaration
Revised January 2008
To Whom It May Concern
I assert my right to the fundamental freedom to
choose what is right for my health
I assert my right not to be poisoned by toxic
chemicals in the name of corporate greed
I assert my right not to have my health damaged by
either government action or apathy
And I fully acknowledge
My often-overlooked responsibility
To do all I can within the spirit of the law
To protect those vital rights
I call for an end to the pollution of my air, food,
water and environment by toxic chemicals
I call for an end to the burden imposed on my body by
the synergistic effect of known toxins
I call for an end to all the many daily violations of
my body by unavoidable toxic chemicals
And I confront with all my honesty
My own complicity and past contributions
In helping to bring about
The present toxic holocaust we are all living under
I believe that all toxic synthetic chemicals can be
replaced by safe and natural alternatives
I believe that a safe, pollution free world is
possible - and that we can have it if we really try
I believe that the unity of the many - in common
cause - can bring about true miracles of change
And I want now to add my voice
To the international choir of the just
For ending the insatiable greed of the few
At the great expense of the many
If
the above declaration resonates with you, your group, or your organisation, then we invite you, with arms wide open, to
join with us in a new unity of common cause called The MICAGO Initiative. Joining incurs no cost, it asks of you no
compromise, and it places no obligation whatsoever upon you. By joining with us you are simply making a
basic but very empowering statement of international unity against the
toxic-chemical abuse of our bodies, our social and wild environments, and the
many forms of wildlife that share this wonderful blue planet with us - all in
the name of soul-less, corporate greed.