Friday, June 1, 2007

Community Spotlight: Jon Neiss

How long have you been ill with chemical sensitivity?

I believe I have been ill with chemical sensitivity since the early 1980's. I only realized there was a problem after a chemical accident in 2003. Our furnace malfunctioned and I was exposed to carbon monoxide, carbon dioxide, polyurethane and paint fumes.

I have tried to trace back the sources of my bad health. I had allergies as a kid and went to an allergist and even had an air filter in my room. My brother also had allergies as a kid and he developed asthma. It has been a very severe form of asthma and he has almost died a couple of times from it. Interestingly, he is also very "allergic" to polyurethane, the particular substance that, I think, put me completely over the edge. So, perhaps there is a genetic predisposition in regards my immune system. Of course, we both grew up in Northern New Jersey, not far from NYC and were undoubtedly exposed to many toxins. Neither my father nor my mother had allergies. So, who knows?

I also had direct exposure to various things. When I was three years old, they found me sucking on and eating batteries! They had to pump my stomach. My dad was a jeweler and he made metal toys for me that he cast out of lead! So, you never know.

I was a victim of violent crime in late 1982. I was kidnapped and held for a week. Within a year or so after that, I developed incredibly severe insomnia and, no doubt, Post Traumatic Stress Disorder. The insomnia was so bad that I slept perhaps 45 minutes to one hour per night for about ten straight years. I can't imagine that there was much left of my immune system after that.

I lived a life with a great deal of stress. During that time, I also lived without heat for three straight winters. I lived in poverty, often in very dangerous neighborhoods. For example, in one place that I lived for 7 years there was gunfire about 100 yards from my house, my upstairs neighbor had 32 arrests as a juvenile, and my neighbors across the hall were two young women whose boyfriends were gun-toting drug dealers.

I was abused by the Social Security system. They were constantly harassing me and lying to me. I was abused by landlords. They would never fix anything and they treated me horribly in any number of ways. My family disowned me and my friends left me. I remember once going through my day and realizing that I had not talked to another human being in three straight weeks. I did not take a vacation in 13 straight years.

So, I think all those things combined to destroy my immune system.

My back first collapsed in 1999. I saw a chiropractor to try and heal it. It helped and I thought I was fine. In 2002, I was thrown off of an ATV. That precipitated another collapse of my back.

They put me on hydrocodone and flexeril. I think those two things were the final straw that destroyed what was left of my liver. I just would not heal. I spent most of 2002-2003 lying down and constantly having powerful muscular cramps. I knew something was profoundly wrong. I tried more chiropractic, Alexander Technique, Feldenkrais, Hatha Yoga, and more. Nothing helped.

Then, in November of 2003, I got the carbon monoxide poisoning. The story is a little more detailed. After the carbon monoxide poisoning, my girlfriend and I left the house. We went down to my mother's house. I started getting profound panic attacks, maybe 5 to 15 per day. After a few days they started to calm down to one or two per day. My mother was having work done in the house. A contractor was working on the kitchen. I asked her not to do the work because I was worried about my breathing. She refused. I had no other place to go. There was a tremendous amount of dust in the air. Then, my mother made me some tea in an old tea pot. Some of the lining of the pot chipped off into the tea and I drank it before I realized what was going on. The very last straw was when the contractor bombed the kitchen with polyurethane. The stuff went through the house and that was it for me. I was in the emergency room. In a last added bit of horror, my 83 year old dad was in the house at the same time. He was in poor health to begin with. He died a few months later. I am sure that the exposures in the house were the final straw for his life.

In what ways has MCS changed your life? What have you lost in terms of work, hobbies, foods, lifestyle?

MCS has changed my life in every way. I had a 4.0 in high school, got into an Ivy League School and was on track to be a doctor. Before the illness, my life had changed and I was already on a different course. I might mention that before being kidnapped I was probably an exceptionally healthy person. Even as a young kid, my mother was taking me to health food stores (ironic, since her later refusal to care for my health nearly killed me). By the time I was 13, I would not drink soda or eat food with preservatives. In high school, I became a vegetarian. And by the time I was 19, I was already becoming involved with herbal medicine. Prior to the kidnapping, I had been practicing Hatha Yoga and meditation for a year. So, I had a lot of preparation for the health problems that were to ensue.

So, once I became ill, I never developed any means to support myself. I lived with my abusive parents for several years, before I took them to court. After that, I lived on disability and supplemented that by working about half-time at very low wage jobs. I was always under-employed.

I worked at jobs with characters that were less than reputable. I have seen knives and guns pulled out. I have been around people involved in a lot of criminal activity. That has also been a great, great stress. I did manage to maintain my dignity and choose poverty rather than join in their criminal activities.

So, I was always under employed, suffering the abuses of working at low wage jobs, often under the table, in NJ, where those jobs were in bad environments. On top of that, I had the stigma of being an adult working for low wages. People always assumed bad things about me. They assumed that I was a drug addict or mentally ill or whatever else.

Has it affected your relationships with your family & friends?

My illness caused profound problems with relationships, but the problems started before the illness hit. My interest in Eastern Religion caused a huge rift in my family. My family basically disowned me and actually became very hostile toward me. When I became ill, they ascribed everything to mental illness. So, in addition to everything else, I had that stigma attached to me. I had to take my family to court. I got smart and went to a psychiatrist and got a legal diagnosis in order to prevent my family from trying to commit me (which they did try once!). One big mess! My parents were trying to claim all sorts of lies and craziness. The diagnosis I got was an anxiety disorder with no mania, delusion, schizophrenia or the other lunacy my parents were trying to claim. It was that diagnosis that allowed me to get on disability. I never got on disability through a medical claim.

Since my parents were claiming all these things about my mental health, it destroyed my reputation and all sorts of relationships with friends. Really, I lost all my friends, every single one of them. Within a year of being sick, they lost interest in me. Within two years, they altogether ceased having any contact with me. It took me about ten years to develop a new circle of friends, but it was never the same.

Have you learned or gained anything by having this illness?

I think I have learned a great deal from this illness. I was certainly forced to learn a great deal about health problems. Even before I recognized that I had MCS, I was constantly trying to protect and improve my health. The various sufferings also forced me to learn many, many things in order to survive. My primary coping mechanisms were through prayer and meditation. I also learned some techniques from martial arts in order to enhance my willpower. That allowed me to "burn" through great pains and problems. I think we learn from every experience that we encounter. I certainly learned plenty about the darker nature of humanity. In that sense, it has been one big lesson in human behavior and psychology. I guess it brought forward that "warrior" that exists inside us. How else can you survive severe problems and sufferings, unless you become a warrior in your life?

I had severe brain fog all through this time. I had problems with concentration. To overcome them, I used a bunch of techniques from meditation, including meditation based concentration techniques. Since my regular thinking was clouded, I think my intuition and creative abilities became heightened. In the early 90's I began to paint and also perform on stage. I performed stand-up comedy, poetry, was an MC, and did some performance art.

One of the things I found from being underemployed was that many organizations need volunteers. So, I began doing a lot of volunteer work. Some of that was in activism. I was involved in activism in the environmental movement, the peace movement, and in human rights. I had done volunteer work and activism prior to being ill, but far more afterward, especially in the frequent periods when I had no work. That certainly was an education in politics and in political issues. I eventually became a part-time staff person at a peace group, ran a local Amnesty International group, and I even gave a few talks, set-up a talks, and did various other things.

I think what I primarily learned were spiritual lessons. I believe in suffering as part of a spiritual life. I think that in our modern era that believes so much in the individual, suffering is seen as anathema. However, in Christian mysticism (and other world religions), suffering is often seen as part of the path to God. So, I see my suffering almost as a gift that I have been given. I see it as a profound opportunity to become closer to God. I think that our human desires for personal pleasure are an obstruction to that relationship becoming closer. So, I think suffering strips away some of the walls that actually separate us from God.

Has making your home safe or finding safe housing been a challenge for you?

Absolutely! Here is the chronology of my housing saga: After the furnace accident, I went to my mother's house. She was having construction done and that put me over the edge and into the hospital. I refused to go back to the apartment where the furnace failed. The landlord became vicious. She refused to let us out of the lease. I was too sick to go to court to fight her. We wound up paying six months rent on two different places! We went down to stay at a friend's at the Jersey shore. I was recovering a bit. Then, they got annoyed with us being there and forced us to leave!

We got an apartment. The garage of the place was under the building. There was an entrance from the garage right into the foyer. The car fumes used to fill the building!

Even the non-MCS tenants complained. The landlord also sprayed for bugs. I asked him to stop; he refused. It was a nightmare.

We finally moved out of there into a new place. That place had a polyurethane floor that was installed improperly. The fumes put me in the hospital. I refused to go back there. My relationship with my girlfriend almost broke up over this.

I went to live in a hotel. That was another nightmare. There were all sorts of characters at the hotel, not least of which was the sleazy manager. The fire alarm kept malfunctioning. It was a real siren. It went off maybe 7 times in a month. Each time that went off, there was a full evacuation with the police and fire department showing up. There were tons of problems there. Being in the hotel was a continuation of the situation with two rents. We were going very deep into debt and my girlfriend began to have panic attacks.

We tried to move into my mother's house. She had moth balls in every closet of the house, in almost every drawer in the house and who knows what else. That made me even sicker than I was in the hotel.

Finally, we moved into a two family house. It has no direct contact with the first floor. It is the best air I have found so far. I am still living in Northern New Jersey, however. We are now about $50,000 in debt and falling deeper.

Then there is the issue of making the air in the house safe. I have done tons of things to make it safer. I have also had to make many compromises in order to appease the landlord and other people. Trying to balance all my needs and concerns with the desires of other people is a real stressful ordeal.

Has any treatment been helpful to you? Have any been harmful? Is it a challenge for you to find appropriate medical help?

I just finally started with an EI doctor a few months ago. I am still in the testing stage.

Of course, I have been doing tons of things on my own, and for years. Everything I have done has helped a bit. Certainly all the spiritual practices have helped. Since I have back and neck injuries, I have done chiropractic, Hatha Yoga, Alexander Technique, acupuncture, cranio-sacral therapy and Feldenkrais. All these things have helped my back and joints. Additionally, I think that they have helped my general health. I think they have boosted my immune system by giving me some relaxation too.
I have been taking vitamins and other supplements for years. I think they have helped me tremendously. This has been going on for years and years. The first supplement which made a difference for me was just calcium. I think it aided brain and nervous function.

I have also taken things which were apparently harmful to me. I am probably still taking some. Without money to get appropriate medical care, I have had to figure things out on my own.

My history with getting medical care has been horrible. I have tons of nightmare stories.

A few months before my back collapsed in 1999, I suspected something was wrong. I set up an appointment to get a physical. I brought in a photocopy of my insurance card. They said that I had to have the actual card and proceeded to bill me for the missed appointment!

After my back collapsed in 2002, I went to an orthopedist. As I walked into his waiting room, I collapsed on his floor. The very first words out of his mouth were (this is a direct quote), “Do you have insurance?” What a heartless thing he was to me! Those are just two stories among tens of horrible interactions, maybe even more than a full hundred!

Is there anything else you would like to add?

Just that I wish everyone in the MCS community well.

-Jon Neiss

Copyrighted © 2007 MCS America

Scientific Studies: A Holistic Approach to MCS

In “the impact of a multidisciplinary, holistic approach to management of patients diagnosed with multiple chemical sensitivity on health care utilization costs: an observational study” Fox et all (2007) of Nova Scotia Environmental Health Centre, Fall River, Nova Scotia, Canada. set out to look at the impact of a multidisciplinary approach to treatment of individuals with multiple chemical sensitivity (MCS) through studying a cohort at the Nova Scotia Environmental Health Centre (NSEHC; Fall River, Nova Scotia, Canada).

A total of 563 patients were linked to their medical insurance records. For confidentiality the researchers linked the patients using encrypted numbers and a blind procedure. The patients were diagnosed with MCS by the NSEHC using the 1999 consensus criteria.

Of interest is that physicians' visits , emergency and hospital separations, and associated costs per patient decreased by 8.7%, or a total savings of $77,440, in the years following the consultation at the NSEHC. The patients with the highest symptom scores had the highest reduction physician visits in the years following diagnosis.

The researchers concluded that “the initial findings from this study are encouraging and warrant further exploration. These results indicate a possible impact on the long-term health care utilization from the NSEHC's management strategies, although a further controlled study, with a longer follow-up is required.”

This study is interesting as it may show that properly diagnosing MCS produces reduced health care utilization which means healthier people who have found answers and solutions to what ails them.

Reference

Fox RA, Joffres MR, Sampalli T, & Casey J. The impact of a multidisciplinary, holistic approach to management of patients diagnosed with multiple chemical sensitivity on health care utilization costs: an observational study. J Altern Complement Med. 2007 Mar;13(2):223-9.


About the Author
Lourdes Salvador is a writer and social advocate based in Hawaii. She is a passionate advocate for the homeless, having worked with her local governor to open new shelters and provide services to the homeless in a new approach to end homelessness. That passion soon turned to advocacy and activism for victims of multiple chemical sensitivity. Since 2006, she has been the president of MCS America and a featured monthly writer for MCS America News. She co-founded MCS Awareness in 2005. She also serves as Partner, Environmental Education Week and Partner, Collaborative on Health and the Environment (CHE). For more information about Lourdes and her advocacy work, please visit: www.mcs-america.org, www.thetruthaboutmcs.blogspot.com, and www.cafepress.com/mcsamerica.


Copyrighted © 2007 Lourdes Salvador

Inside MCS America - June 2007

Website

The MCS America website has a new look to the news pages to go along with the new look to the rest of the site.



We’ve moved to bold colors with larger fonts for easier reading and navigation. The news links now show both the title and the hyperlink for easy viewing.


Proclamations

MCS America would like to thank all those who have worked to obtain a total of 37 proclamations for MCS, TI, or CS in 34 states! This year’s proclamations represent the largest signing of any year thus far! All the proclamations may be viewed at:




Proclamation Tally
37 Total Proclamations

34 Total States

1 County

8 MCS

26 TI

1 CS/TI

2 MCS/TI


Proclamation List
Alabama - TI

Arizona - TIA

rkansas - MCS

Broward County, Florida - MCS

Colorado - MCS & TI

Connecticut – MCS

Connecticut - TI

Florida - MCS

Florida - TI

Georgia - TI

Idaho - TI

Illinois - TI & CS

Indiana - TI

Iowa - TI

Kansas - TI

Kentucky - TI

Louisiana - TI

Maine - TI

Maryland - TI

Massachusetts - MCS

Michigan - TI

Mississippi - TI

Missouri - TI

Montana - TI

Nebraska - TI

Nevada - MCS

New Hampshire - TI

New Mexico - TI

New York - TI

Ohio - MCS

Oklahoma - TI

Oregon - MCS/TI

West Virginia - TI

Washington - MCS

Washington DC - TI

Wisconsin - TI

Wyoming - TI

Grandma's Cupboard: Healthy and Natural Kitchen Solutions

Floors

Borax
1 Cup Borax to a bucket of hot water.
Mop as usual. Rinse


Dish Soap


Baking Soda
Moisten a sponge and dip in baking soda to wash dishes.
Use a paper towel to wipe grease first.
Rinse well.

Homemade Dish Soap
Natural, Unscented Bar Soap
Water
Heat mixture. Use as you would dish soap.

Automatic Dishwasher Soap

Homemade Dishwasher Soap
1/2 cup liquid castile soap
1/2 cup water
1/4 cup white distilled vinegar
Baking soda
Mix together all ingredients except the Baking soda.
Use 1 Tbsp. in each dispenser. Sprinkle a handful of baking soda over dirty dishes and in the bottom of your dishwasher to absorb odors and boost cleaning power at the start


All Purpose Cleaners


Baking Soda or Borax & Vinegar
Fill each dispenser with 1/8th cup baking soda or 2 tsp of borax (not both).
Pour a capful of white distilled vinegar into the bottom of the dishwasher at the rinse cycle. Lemon juice may be substituted.
Warning: Do not use this mixture for fine silver.
Counters, Cabinets, Appliances

All-Purpose Baking Soda Cleaner
Dissolve 3 tablespoons baking soda in 1 quart of warm water.
Apply with a sponge.
Rinse with clear water.

All-Purpose Borax Cleaner
Put 2 teaspoons of borax in a spray bottle with 2 cups of very hot water. Shake to blend.


Disinfectants


Hydrogen Peroxide 3% & White Distilled Vinegar as a Disinfectant
Apply peroxide full-strength with a sponge or spray from a spray bottle.
Follow immediately with vinegar in the same application method.
Rinse food preparation surfaces.


Stainless Steel Cleaner


Chrome and Stainless Steel Cleaner (Doerksen, 1999)
Dip soft cloth in undiluted white vinegar.
Wipe surface.

Garbage Disposal

Freshener (Doerksen, 1999)
Grind ice and used lemon or orange in the disposal.

Disinfectant (Doerksen, 1999)
Mix 1/2 cup of borax (natural mineral that kills mold and bacteria) with 1 gallon hot water.
Add a few sprigs of fresh thyme.
Steep for 10 minutes, strain, cool.

Doerksen, A & L (1999) Toxicity in the Home, Part 2. Zap Times, Issue 5. Retrieved on June 11, 2006 from: http://www.bestzapper.com/zaptimes5.htm

Disclaimer
This information is for informational purposes and is not intended to replace professional consult and no such claims are inferred. Neither MCS-America nor Lourdes Salvador will be responsible for misuse of this information.

For the entire Grandma's Cupboard: Healthy and Natural Cleaning
Solutions brochure, see: http://mcs-america.org/kitchen.pdf



Copyrighted © 2007 MCS America News & Lourdes Salvador

Biomarkers for Toxic Exposure

We live in a toxic world and avoidance of pollutants is nearly impossible. Outdoor air is often rated poorly, yet indoor air can be equally as bad or worse. Sick building syndrome (SBS) is becoming more and more commonplace, yet little is known about how to diagnose it.

Researchers at the Department of Public Health, Okayama University Graduate School of Medicine, Dentistry and Pharmaceutical Sciences may have the answer. Wang et al examined the use of Unmetabolized VOCs in Urine as Biomarkers of Low Level Exposure in Indoor Environments.

Twenty-four subjects were examined from 13 residences in Japan. Air samples were collected from both the living room and bedroom at the height of the subjects breathing zone. The concentrations of volatile organic compounds (VOCs) were higher in the bedroom than the living room.

Urine samples were collected before bed and upon awakening. Twenty one of the twenty four had no work related exposure to VOCs and showed significant correlations between the urinary and air concentrations of toluene (.54), o-xylene (.61), total xylene (.56), and p-dichlorbenzne (.84). Only the air VOCs in the bedroom influenced morning urinary VOC concentrations and the researchers concluded that the unmetabolized VOCs toluene, o-xylene, total xylene, and p-dichlorobenzene in urine can provide a reliable biological indicator for air VOC exposures in non-occupational environments.

This is crucial, as exposures to high concentrations of VOCs can lead to respiratory problems, eye irritation, and throat irritation. Though urinary concentration has been used in the past to ascertain occupational exposure, few studies have done the same with indoor air in non-occupational environments. One limitation to doing so is that some urinary biomarkers are also the metabolites food items, making the urine concentration invalid for low air concentrations as the food origin would be higher.

Of interest is the finding that gender was a confounder for urinary toluene levels due to the higher percentage of fat women carry. Fat tissue stores solvents during exposure, delaying urinary excretion in women. It is therefore conceivable that this additional body burden women carry may explain the higher prevalence of women who develop environmental illnesses, such as sick building syndrome and multiple chemical sensitivities.

Reference

Wang BL, Takigawa T, Takeuchi A, Yamasaki Y, Kataoka H, Wang DH, Ogino K. Unmetabolized VOCs in Urine as Biomarkers of Low Level Exposure in Indoor Environments. J Occup Health. 2007 Mar;49(2):104-10.

About the Author
Lourdes Salvador is a writer and social advocate based in Hawaii. She is a passionate advocate for the homeless, having worked with her local governor to open new shelters and provide services to the homeless in a new approach to end homelessness. That passion soon turned to advocacy and activism for victims of multiple chemical sensitivity. Since 2006, she has been the president of
MCS America and a featured monthly writer for MCS America News. She co-founded MCS Awareness in 2005. She also serves as Partner, Environmental Education Week and Partner, Collaborative on Health and the Environment (CHE). For more information about Lourdes and her advocacy work, please visit: www.mcs-america.org, www.thetruthaboutmcs.blogspot.com, and www.cafepress.com/mcsamerica.
Copyrighted © 2007 Lourdes Salvador

Better Living: A Safer Home

The most challenging aspect of living with multiple chemical sensitivity (MCS) or toxic chemical injury is securing chemical free housing. Even when all traces of previous occupants air fresheners, fragrances, and laundry products have been removed, the house itself may still be leeching volatile organic compounds that often evade our sense of smell but impact our health.

Many woods, including those in cupboards, contain formaldehyde. Carpets contain glues and other synthetic materials. Paint, flooring, HVAC materials, baseboards, trims, and other building materials may present problems as well. Furniture is yet another concern with formaldehyde, foam cushions, and other synthetic materials.

Despite all of these challenges, there are low cost ways to help seal in the gases and reduce the amount present in the air we breath. Three such products are Mylar, Denny Foil, and AFM Sealer.

Mylar

Mylar is most often found in camping supply sections of stores in the form of a Mylar Emergency blanket for about $1.99. Essentially, Mylar is an aluminized blanket. It is used for camping and emergencies as it has a propensity for retaining heat when one wraps in it and also can be used as a shelter to reflect heat. It resembles a thin shower curtain of reflective aluminum.

Mylar blankets can be used to wrap mattresses to seal in the molds, fire retardants, and other chemicals. They can also be used to cover chairs when in public, to hang on walls to prevent vapor escape, and to wrap boxes and other possessions to protect them. The uses are endless.

A few sources for purchase include:
http://www.survivalinstinct.com/sur1.html
http://www.amazon.com/Emergency-Mylar-Blanket-Blankets-EB-10/dp/B000FETSDQ


Denny Foil

Denny Foil is an impermeable vapor barrier used in building to seal off-gassing materials via a hermetic seal. It comes in a roll and can be used to cover the floors, walls, and ceilings to prevent VOC off-gassing. It is much sturdier than Mylar and resists tears better too… for a bit more cost.

A few sources for purchase include:

EL Foust Co, Inc.
754 Industrial Drive, PO Box 105 Elmhurst, IL 60126
1-800-353-6878
sales@foustco.com
http://www.foustco.com

Denny Sales Corp.
3500 Gateway Drive
Pompano Beach, FL 33069
Phone: 800-327-6616

AFM Safecoat Sealer

AFM Safecoat has a sealer that can be used on walls, floors, carpets, cabinets, and furniture. It dries clear and is unnoticeable while it works to prevent off-gassing. The company also sells environmentally responsible, sustainable and non-polluting paints, stains, wood finishes, sealers and related green building products. AFM products do not contain toxic ingredients such as solvents, heavy metals, chemical residuals, formaldehyde, or other harmful preservatives.

AFM Safecoat
619-239-0321
Toll Free Voice Mail - 800-239-0321
http://www.afmsafecoat.com/products.html

Disclaimer

As with any new product, please test these before you use them as sensitivities may vary. Though most with MCS tolerate the products discussed in this article, some may have adverse reactions. We will not be held responsible for their use, misuse, or any damages sustained. Neither MCS America nor Lourdes Salvador has financial interest in any of these products.

About the Author
Lourdes Salvador is a writer and social advocate based in Hawaii. She is a passionate advocate for the homeless, having worked with her local governor to open new shelters and provide services to the homeless in a new approach to end homelessness. That passion soon turned to advocacy and activism for victims of multiple chemical sensitivity. Since 2006, she has been the president of
MCS America and a featured monthly writer for MCS America News. She co-founded MCS Awareness in 2005. She also serves as Partner, Environmental Education Week and Partner, Collaborative on Health and the Environment (CHE). For more information about Lourdes and her advocacy work, please visit: www.mcs-america.org, www.thetruthaboutmcs.blogspot.com, and www.cafepress.com/mcsamerica.
Copyrighted © 2007 Lourdes Salvador

Multiple Chemical Sensitivities (MCS) Afflicts Many

Do you think chemical sensitivity is rare? Think again! A surprising number of people report sensitivity to ordinary everyday chemicals such as perfume, automobile exhaust, air freshener, cleaning products, and petroleum products. The figures range from an average of eleven to seventeen percent, with spikes as high as thirty-three percent of subjects who report reactions to multiple chemicals. The figures reveal that at least two percent, and as many as six percent, have been so bothered by chemical exposures that they sought medical care and received a doctor-diagnosis of multiple chemical sensitivity (MCS).

An early study by Bell et al (1993) investigated young adult college students in the prevalence of self-reported illness from the smell of the pesticide, automobile exhaust, paint, new carpet, and perfume. Sixty-six percent reported feeling ill from one or more of the five chemicals. Fifteen percent identified at least four chemicals as making them ill. Chemical sensitivity was more commonly reported by women than men.

In the same year, Bell surveyed an elderly population in the same manner and found that 57% reported that at least one chemical made them feel ill. And 17% reported that at least four of five chemicals made them ill. These findings were nearly identical to the study of teenagers, suggesting that chemical sensitivity is not age dependent.

At the Department of Emergency Medicine, East Carolina University School of Medicine, Greenville, North Carolina, Meggs et al (1996) conducted a general telephone survey. Chemical sensitivity was reported by 33% of the individuals surveyed with 3.9% reporting symptoms of chemical sensitivity that occurred daily.

In 1998, a memo from Deputy State Epidemiologist Voorhees to Joe Thompson, Special Counsel, Office of the Governor, New Mexico Department of Health reported a prevalence of 17% who experience chemical sensitivities and 1.9% who have been doctor diagnosed.

Also in 1998, Bell et al conducted a study of self-reported chemical sensitivity and wartime chemical exposures in Gulf War veterans and found that an average of 30% reported chemical sensitivity while 86% of those with poorer health reported chemical sensitivity. The striking similarities in prevalence findings are noteworthy.

The Environmental Health Investigations Branch, Department of Health Services, in Emeryville, CA conducted a 1999 survey (Kreutzer et al) of 4046 subjects, which found that 15.9% reported being unusually sensitive to everyday chemicals. Additionally, 6.3% of those surveyed reported doctor-diagnosed "environmental illness" or "multiple chemical sensitivity" (MCS). The researchers found that hypersensitivity is more common in women, though it is experienced by both men and women of a variety of ages and educational levels. Marital status, employment, education, geographic location, and income were not predictive of reported chemical sensitivities or reported doctor diagnosis.

Caress & Steinemann (May 2004) back this data up in a State University of West Georgia sample of 1582 respondents from the Atlanta, Ga, standard metropolitan statistical area. They found that 12.6% of their sample reported the hypersensitivity and that, while the hypersensitivity is more common in women, it is experienced by both men and women of a variety of ages and educational levels. The researchers determined that their finding is similar to that (15.9%) found by the California Department of Health Services and suggest that the national prevalence may be similar.

Caress & Steinemann (June 2004) later conducted a national telephone survey of randomly selected individuals, which was published a month after their last study. They found that 11.2% of Americans reported an unusual hypersensitivity to common chemical products, 31.1% reported adverse reactions to fragranced products, and 17.6% experienced breathing difficulties and other health problems when exposed to air fresheners. Again, all demographic groups were affected equally and chemical hypersensitivity was more common in women.

A year later Caress and Steinemann (2005) conducted another study in search of a linkage between asthma and chemical hypersensitivity. A random sample of 1057 geographically weighted individuals were surveyed. Findings showed that 11.2% reported a hypersensitivity to chemicals and 7.4% reported they were doctor-diagnosed with multiple chemical sensitivities (MCS). Of the doctor-diagnosed cases, 42% reported also being diagnosed with asthma, indicating a significant overlap between asthma and chemical hypersensitivity.

Despite all the studies that are strikingly similar, the true prevalence of MCS remains a mystery due to the lack of biomarkers and clinical criteria for diagnosis. It is interesting to note that doctors are nonetheless using available materials, such as a case definition created in 1999, and making an MCS/EI diagnosis in as much as an estimated 7% of the population.

If the case definition were applied to all who report chemical sensitivities to multiple chemicals, would we be looking at an estimated average of 15-17% of the population who suffer from MCS? This would be a pandemic proportion when one considers that only 7% of the population suffer from diabetes according to the American Diabetes Association.

Clearly additional research is required and should be directed towards identifying clear biomarkers and clinical tests by which diagnostic criteria and definitions for MCS can be developed.

References

Bell, IR, Warg-Damiani, L, Baldwin, CM, Walsh, ME and Schwartz, GE. Self-reported chemical sensitivity and wartime chemical exposures in Gulf War veterans with and without decreased global health ratings. Mil Med. 1998 163:725-32.

Bell, IR, Schwartz, GE, Peterson, JM and Amend, D. Self-reported illness from chemical odors in young adults without clinical syndromes or occupational exposures. Arch Environ Health. 1993 48:6-13.

Bell, IR, Schwartz, GE, Peterson, JM, Amend, D and Stini, WA. Possible time-dependent sensitization to xenobiotics: self-reported illness from chemical odors, foods, and opiate drugs in an older adult population. Arch Environ Health. 1993 48: 315-27.

Caress SM, & Steinemann AC. Prevalence of multiple chemical sensitivities: a population-based study in the southeastern United States. Am J Public Health. 2004 May;94(5):746-7.

Caress SM, & Steinemann AC. A national population study of the prevalence of multiple chemical sensitivity. Arch Environ Health. 2004 Jun;59(6):300-5.

Caress SM, & Steinemann AC. National prevalence of asthma and chemical hypersensitivity: an examination of potential overlap. J Occup Environ Med. 2005 May;47(5):518-22

Kreutzer R, Neutra RR, & Lashuay N. Prevalence of people reporting sensitivities to chemicals in a population-based survey. Am J Epidemiol. 1999 Jul 1;150(1):1-12.

Meggs WJ, Dunn KA, Bloch RM, Goodman PE, & Davidoff AL. Prevalence and nature of allergy and chemical sensitivity in a general population. Arch Environ Health. 1996 Jul-Aug;51(4):275-82.

Voorhees, RE. Memo from Deputy State Epidemiologist Voorhees to Joe Thompson, Special Counsel, Office of the Governor. New Mexico Department of Health. 1998.

About the Author
Lourdes Salvador is a writer and social advocate based in Hawaii. She is a passionate advocate for the homeless, having worked with her local governor to open new shelters and provide services to the homeless in a new approach to end homelessness. That passion soon turned to advocacy and activism for victims of multiple chemical sensitivity. Since 2006, she has been the president of MCS America and a featured monthly writer for MCS America News. She co-founded MCS Awareness in 2005. She also serves as Partner, Environmental Education Week and Partner, Collaborative on Health and the Environment (CHE) For more information about Lourdes and her advocacy work, please visit: www.mcs-america.org, www.thetruthaboutmcs.blogspot.com, and www.cafepress.com/mcsamerica.
Copyrighted © 2007 Lourdes Salvador

Sal's Place: Medical Torture!

I was disheartened to read an Associated Press story which was published on April 25 entitled “Locked up TB patient is unable to testify”. The story opened with “A tuberculosis patient locked up for nine months and under quarantine inside a Phoenix hospital jail ward will continue to be held under the same conditions, a judge ruled Tuesday.”

At first I thought the government was protecting people from a TB outbreak by holding Robert Daniels, a 27 year old man with drug resistant TB, who came to the United States from Russia in the hopes of receiving better care for his TB. Then I read that Daniels has not been allowed to shower for nearly nine months, has not been outdoors, and has been denied a television and other items even common prisoners are entitled to. He has been held against his will for nearly nine months!

Dan Pochoda, legal director of the American Civil Liberties Union, was said to accuse the government of treating a sick man like a criminal. Most criminals who are jailed are allowed daily showers, television time, and a phone call. Daniels has been denied all of these and is not allowed to turn the lights out when he sleeps. What purpose could that serve?

It serves the purpose of punishment. His crime is being a public safety threat. County health officials accused Daniel of being dishonest and view him as a health threat because he forgot to bring a mask when he went to the store and missed a dose of his medication. Even the best intentioned people have occasionally forgot a dose of medicine. Most prescription drug labels have instructions explaining what to do when a dose is missed. MCSers who have reactions to environmental contaminants have been known to forget a mask when going out. It’s human nature to occasionally forget. What makes Daniels so different? Daniels is being subjected to medical imprisonment on the basis of a physical illness through no fault of his own. If this is allowed to continue, nearly every American could be subject to being jailed and tortured for having any contagious medical condition. Will Daniels case set a precedence for medial torture of anyone with a contagious illness or disease?

It’s true that Daniels should not be out and about in the community infecting others; however, he should be held in comfort, decency, and respect. He did not choose to contract TB any more than any one of us chooses to contract the flu. People have died from complications of the flu, yet the government does not jail those who contract the flu. It was not a bad choice that he made that caused his infection. He may have simply eaten a meal that was prepared by a chef who was infected.

I imagine Daniels is distraught and frantic over being so ill. He has a wife and child back in Russia whom are likely dependent on his support.. While he is accused of exhibiting anger in his reactions to health personnel, his reaction is natural in his oppressed condition. What reassurance do the rest of us have that we will not be the next person signed up for medical torture? Could we be tortured and refused a shower? Daniels is still a human being. He deserves better!

About the Author
Lourdes Salvador is a writer and social advocate based in Hawaii. She is a passionate advocate for the homeless, having worked with her local governor to open new shelters and provide services to the homeless in a new approach to end homelessness. That passion soon turned to advocacy and activism for victims of multiple chemical sensitivity. Since 2006, she has been the president of
MCS America and a featured monthly writer for MCS America News. She co-founded MCS Awareness in 2005. She also serves as Partner, Environmental Education Week and Partner, Collaborative on Health and the Environment (CHE). For more information about Lourdes and her advocacy work, please visit: www.mcs-america.org, www.thetruthaboutmcs.blogspot.com, and www.cafepress.com/mcsamerica.

Copyrighted © 2007 Lourdes Salvador

Points to Ponder: Just What Is Toxic?

This question is one that at times is ignored. The Food and Drug Administration (FDA) will allow a toxicant to be used in vaccines, medicines, and in food, as they believe that the amounts for each are to be accepted as a benefit to society as a whole. They fully understand that some will have negative effects. Yet it is the economic impact that is considered. The reality is that economics is the first priority.

The Environmental Protection Agency (EPA) relies on this theory. After all, you can’t destroy the economy just because someone might become ill can you? What is 1 in 100 after all? Ten percent is just not enough to alter guidelines. This is the sad reality as we continue to be over exposed to many toxins from water, land, air, and the things that we eat.

For reasons as of yet to be understood, total burden is not considered as each product or chemical is only thought of as a single exposure. Mathematics seems to fail us, as studies that use statistical variations can be altered to emphasize positive or negative results depending on the author’s wishes. This is why all of our toxic burdens are ignored, as studies supporting the use of toxins are often funded by industry and examine only one toxicant. They can manipulate the numbers by use of statistical formulas that can give misleading information. And the additive properties of many chemicals that have the same negative effects are not considered, as studies are done on an individual exposure basis.

For example: If I receive 31 vaccines with 200 plus mg’s of mercury that is somehow considered safe. But there is no inclusion of the 20 mgs from amalgams or the other sources of known exposures. The mercury is excluded as a contributor to the cause of my problems. Also excluded are the other toxicants that are known to have influence upon the same neurotransmitters or immune system dysfunctions. On an individual basis the levels you may come into contact with are considered safe. The additive effects have not been studied.

I have said for years that 2+2 still equals 4, despite the simplistic way these studies about causation are done. Eliminating just one of these toxins will not cause an improvement, as it is the entire burden that creates our problems. We may consider ourselves equals as human beings, but our bodies react to different stimuli one way and may not react to others in the same way. There is no set equality here.

We do understand all of these scientific facts yet it seems to be easier just to ignore them, as only a small percentage die. Many think it’s fine if you have a headache; then take a pill. If your child is stricken with some disorder, that is just bad luck. After all, isn’t it a world of the fittest? Are you depressed? Then take another pill. The problem is that none of us are immune anymore.

We have family members that suffer, many of us suffer, and yet because the government has shown us the statistics we believe we are safe. We believe that it’s not that bad. There is no connection between toxins and what we see today. Could government be hiding the true facts? You can bet on it, as money will buy the misleading “facts” that are needed and the illnesses we suffer do create an entire new industry. What one industry creates, another can profit from to make you believe that you feel better.

Maybe I’m wrong; time will tell. One thing I do know is that this situation will not get better by doing things the same way.

- Alan Moses

Wake Up America! The Thief of Mahy Lives

I am constantly on the prowl in search of new victims. I do not discriminate---health care workers, teachers, students, airline personnel, teens, moms, dads, and innocent children are my prey. If you are dynamic and have a lust for life, I will seek you out, and I will find you.

Just when you are at the peak of your endeavors, climbing that career ladder or building your family and home, I will find you. There is nothing that you have in your life today that I am not capable of destroying tomorrow, your career, your education, your goals, your dreams, your family, and your life. I will have it all. I will strip you of your ability to function at any level above minimal, and from this day on you will refer to that minimal as a "good” day.

I have the ability to create an invalid out of you overnight, and I will. It will take a marathon effort for you just to get out of bed. At a cellular level your immune system will be in a constant war, battling itself and unnamed viruses, which will painfully be replicating in your brain. I promise you, I will bring you despair along with pain, isolation and losses far beyond what you can ever imagine. Your mind will be in a constant "fogged" state, your expression will be unable to express, and your eyes will have a noticeable "glazed over/drugged out" look.

You will find it most difficult to pay attention, concentrate, or even process the simplest of thoughts. Making change from a dollar may well be beyond your ability now. Your mouth may feel like it is full of marbles when you try to speak, as your tongue twists and nothing you try to say comes out right. Who would believe your level of education when you can't even string enough words together to make a complete sentence... or one that makes any sense for that matter.

I promise, I will bring you at any unsuspecting time, severe abdominal pain, nausea, vomiting and diarrhea along with a host of gastro-intestinal disorders. I will make you weak and lifeless as one could be without being confirmed dead. You will be housebound or in bed for several years if not the rest of your life. As part of incapacitating you, I will make your heart race and your head pound; your throat will constantly be sore and your lymph glands will swell. That will all seem trivial after I inflame and spasm muscles throughout your body. Crushing a grape between your fingers may take too much energy or be too painful now.

On those nights that I allow you to sleep, you will awaken drenched with sweat or throbbing with pain. Perhaps I might even throw in a little seizure activity. On those nights that I do not allow sleep to occur, I will torture you with thoughts of death.... not suicide, but death. Simply because you have not come to realize that this is your new life, and that you are not living. You will need to recreate your being every day, as every day I will bring you unpredicted symptoms and suffering.

I have also done a few things that you may not be aware of yet. I placed some lesions on your brain; have you noticed how you have difficulty with balance and memory yet? I have permanently altered your immune system. I have shorted out your nervous system so that you have intermittent numbness and tingling, which might resemble an electrical current zapping you from time to time. This is called neuropathy. Nope, it's not curable either! Now I have you. I have taken over your body and mind. I have stolen your life but left you alive, not very functional, but by clinical definition you are still alive.

Your family will not be able to give you all the constant care that you need on a daily basis. As for your friends, well, they're still on that ladder climbing up. Rest assured, I am looking for them too. By now, chances are good that most of your family and friends have abandoned you, so you must have learned the definition of isolation. This newfound isolation will save you from having to explain how sick you really are to others, they won't understand anyway. Isolation will save you all that energy.

Your health insurance has already been or will shortly be discontinued as you lost your job from not being able to "keep up." Perhaps you got caught dozing off or called in sick one too many times. Now that you are no longer employable or insurable, when you seek medical care, any medical professional that figures me out will diagnose you and say that what you have is presently not curable.

Now it is time for you to seek out medical care, nation if not worldwide. However, most so called medical professionals will not even have the ability to recognize me when they see me, as they have not learned about me in medical school. So, chances are good that you will be misdiagnosed. You will give more blood samples and have more examinations than you ever imagined existed.

Then you can take the results to dozens of doctors in search of a diagnosis, one that is valid as well as socially and medically acceptable. One that does not label you as depressed or say that "it is all in your head!!!" Most doctors will suggest a vacation, weight loss diet, new or increased love life, help with the children, or change of scenery as the "cure," mainly because you may look like the picture of health. This is my mask of deception.

You will pray for a positive word from current research. Research, which you will soon learn, is quite limited due to lack of funding and government support. You will learn new vocabulary which contains words like: T-Cells, Cytokines, Nuclear Antigens, Natural Killer Cells, Immunoglobulins, Cytomegalovirus, Seratonin, Cerebral lesions, and Immune Dysfunction are among a few. However the most important words that you will need to know and fight for are Social Security Disability and Medicare.

At one point I may give you a false sense of recovery or remission. Let me assure you, I will be back, as you are my prisoner and that makes me your keeper. I have placed the lives of millions of people nationwide in limbo, I continue to do the same world wide. I would consider this an epidemic, wouldn't you?

Eventually I will bring the government, health care workers, and society to its knees in search of unraveling my complexities, which are crippling humanity. I leave it up to you, my victims, and your caretakers, to educate the public and let them know that I am very real and that you are very sick. Unfortunately, I have been given a totally ridiculous name, which will make your job even more difficult. Until that name is changed, I am...CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME.

- Kathy Houghton
Copyright © Kathleen Houghton
Alaska CFS-MCS Association
Reprinted with Permission

Kathleen Houghton, author of The Thief of Many Lives was a professional healthcare worker dedicating many years to Pediatric Special Care nursing before CFS put her life on hold at the age of 36. She continues to be ill and is mostly housebound with Multiple Chemical Sensitivity (MCS) as well as CFS. When able, she promotes CFS and MCS awareness through accurate community information and education.

June MCS Community News

Mold, construction issues delay opening of LISD school




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Contractor: School clear of mold




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Black mold found at Lucas County Youth Treatment Center in downtown




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Mold Delaying Opening Of New Leander ISD School




Chemicals used on car seats 'toxic' to children, study warns
http://www.cbc.ca/canada/manitoba/story/2007/05/17/carseat-chemicals.html
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Scientific Panel Says Erin Brockovich Was Right


http://www.medpagetoday.com/tbprint.cfm?tbid=5669&topicid=120
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Toothpaste with 'toxic substance' pulled out from store
http://www.hindu.com/thehindu/holnus/008200705170301.htm
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The Battle to Ban Toxic Toys
http://www.truthout.org/issues_06/051507HA.shtml
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Could microwave popcorn be toxic?
http://abclocal.go.com/ktrk/story?section=health&id=5311999
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Mold at Wilmot state prison: who's at risk?




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There's unhealthy mold in the city courthouse


http://fredericksburg.com/News/FLS/2007/052007/05162007/282974
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May 17, 2007 Library reaches out to residents


http://hometownlife.com/apps/pbcs.dll/article?AID=/20070517/NEWS13/705170804/1030
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Copyrighted © 2007 MCS America News & Lourdes Salvador

Nutritioin and Chemcail Toxicity

In a recent review, Using Nutrition for Intervention and Prevention against Environmental Chemical Toxicity and Associated Diseases, Hennig et al (2007) set out to find evidence to make the recommendation that nutrition should be considered a necessary variable in the study of human disease associated with exposure to environmental pollutants.

The authors remind us that diet-related chronic diseases represent the single largest cause of mortality in developed nations, but are still rare or nonexistent among people who are hunter/gatherers. This "diseases of civilization" is influenced by elements that include diet, exposure to environmental agents, and genetic susceptibility.

The need to further understand the complex interplay between environmental exposure, nutrition, and disease risk was noted along with need to developing better tools to evaluate exposures, nutritional intake, and activity levels to determine how they interact with specific genotypes in correlation to disease.

There is no easy way protect against diseases associated with exposure to environmental pollutants, as many pollutants are persistent in the environment and bioaccumulate in the body. Removing these pollutants from the environment and industry is extremely costly and difficult to achieve. Environmental pollutants trigger signaling pathways that respond to the oxidative stress from pollutants. These same pathways are associated with many chronic diseases, therefore the researchers believe it is important to understand how these pollutants may modulate disease.

Studies have shown that diet and lifestyle changes can modify pathologies of some chronic diseases. For example, industrial workers exposed to petrochemicals developed nonalcoholic fatty liver disease, which resolved with removal from workplace exposure. Yet nutritional interventions, including antioxidant therapy, has also resulted in significant improvement. This researchers believe this may be important for those exposed to environmental toxicants.

Another aspect of chronic disease is inflammation. Nutrients and flavonoids have been associated with a reduced risk of chronic inflammatory diseases and therefore supplementation may be beneficial. Environmental toxicants such as heavy metals contribute to diminished levels of antioxidants that may aggravate inflammatory states. Dietary intake of omega-3 polyunsaturated fatty acids and polyphenols such as flavonoids may be beneficial.

Nutritional intervention has been shown to result in health improvements and lowering the toxicant body burden. Hennig and his colleagues cite a case of a patient who had an extremely high body burden of polychlorinated biphenyls (PCBs) and also suffered from diabetes requiring daily injections of insulin. With supplemental foods containing the fat substitute olestra, the PCB body burden dramatically decreased and the patient's diabetes disappeared.

Another case cited by Hennig et al discovered that calcium supplementation was associated with a marked decrease of lead levels in both blood and breast-milk.

Hennig and his colleagues summarize by saying “there is a great need to further explore this nutritional paradigm in environmental toxicology and to improve our understanding of the relationship between nutrition, exposure to environmental toxicants, and disease” and “nutrition may be the most sensible means to develop intervention and prevention strategies for diseases associated with many environmental toxic insults.”

The authors add that the National Institute of Health Sciences (NIEHS) “has taken a leadership role in addressing these uncertainties with an inclusive research approach that includes basic science, as well as translating research findings into public health prevention strategies. These strategies will hopefully make their way into the classroom and general education for physicians and ultimately to educational materials directed at the general public.

Nutrition can and should be an integral part of health and treatment. Surely it can’t hurt to get better nutrition. Indeed it might be beneficial for both treatment and prevention. Time, and more studies aimed at nutritional intervention, will tell.

Reference

Hennig B, Ettinger AS, Jandacek RJ, Koo S, McClain c, Seifried H, Silverstone A, Watkins B, & Suk WA. Using Nutrition for Intervention and Prevention against Environmental Chemical Toxicity and Associated Diseases. Environmental Health Perspectives. 2007 April 115:4.

About the Author
Lourdes Salvador is a writer and social advocate based in Hawaii. She is a passionate advocate for the homeless, having worked with her local governor to open new shelters and provide services to the homeless in a new approach to end homelessness. That passion soon turned to advocacy and activism for victims of multiple chemical sensitivity. Since 2006, she has been the president of
MCS America and a featured monthly writer for MCS America News. She co-founded MCS Awareness in 2005. She also serves as Partner, Environmental Education Week and Partner, Collaborative on Health and the Environment (CHE). For more information about Lourdes and her advocacy work, please visit: www.mcs-america.org, www.thetruthaboutmcs.blogspot.com, and www.cafepress.com/mcsamerica.
Copyrighted © 2007 Lourdes Salvador

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