November 8, 1998

Alice Knox and
Interagency Workgroup on MCS Members
Agency for Toxic Substances and Disease Registry
1600 Clifton Road, Mail Stop E57
Atlanta, GA 30333

Dear Ms. Knox and Distinguished Workgroup Members:

Thank you for your attention to and research on the very important subject of Multiple Chemical Sensitivity (MCS) and for giving us the opportunity to comment on the data you have collected.

It is our strong observation that there is so much controversy on the subject matter of "proving" MCS "exists" as a "scientific entity" that the needs of those with this disease are being totally overlooked. Our primary recommendation is to somehow convey this in your final report. We are human beings who are severely stuttering. Obviously this disease needs to be researched, much the same as others have been. However, during the interim, empathetic statements encouraging physicians and others to address our human needs for emotional support as well as medical support are crucial to our well being and the reduction of unnecessary additional stress levels.

We feel that there is far too much emphasis on and recommendations for conducting psychological testing when it is not at all warranted. A good physician knows that his most important information comes from the patient and we are all telling you that chemicals are making us sick. The toxicological literature is replete with the symptoms we are experiencing even though we are reacting to lower levels of the chemicals. OSHA reduces threshold levels based on observations that this is possible. Why then, are we trying to rebuild the wheel? The research is already there but the chemical industry is hiring medical experts to confuse and misdirect the proper issues. Why waste precious valuable time exploring psychological possibilities which can never be proven "scientifically" and deny those with MCS of a proper diagnosis? Psychology is based on the interpretation of behaviors of human beings. This often leads to mistakes. To interpret MCS symptoms using psychological rationale is treading on unscientific ground based solely on opinion.

We are hoping you will immediately encourage additional funding not only for MCS research in general, but also for further expanded studies on the effects of certain commonly used chemicals on the human body. We have made suggestions in our attached comments. This will not only help those suffering from MCS but will also provide tools for preventing certain cancers, lupus, asthma, MS, chronic fatigue, learning disabilities, arthritis and many other diseases.

Our group is aware of the negative comments of other MCS groups regarding your report. While we have no knowledge of the validity of some of the comments, we have seen more current and representative MCS studies that have not been included in your report and would hope that, at the least, you will make attempts to include these as well. We feel some of the reports suggesting psychological origin are biased, misleading, unfair and unscientific. John Stossel, in his 20/20 Program took many comments of those with MCS out of context and here too these reports are out of context and not representative of those with MCS. There have been medical community disputes concerning some of the published psychological reports but this fact is not even addressed in your report. Thus, your inclusion of these controversial studies may lead some to believe they are "scientific" which they are not. Everyone must play by the same set of rules and this is apparently not happening. Unfortunately, the unfairness directly affects those with MCS who are caught in the middle of this controversy and who, as a result of the controversy, do not get the support they require from either their families or physicians.

Recently I had the opportunity to hear Pulitzer Prize winner Carey Mullis speak about his DNA research on public radio. During the program Carey stated that HIV has not been scientifically proven to be the cause of AIDS. He indicated that funding sponsors 10,000 labs and many HIV papers have been written as a result. However, he states there is still no positive connection between HIV and AIDS, the name given to a disease in which there are 29 symptoms. While this may or may not be true, those with AIDS obviously need help. And so do we!

There are "unproven" grounds and controversies concerning the diagnosis and treatments for numerous diseases but those controversies do not mean the patients have psychological problems. Psychological problems usually occur because of disease. If those with MCS are expected to prove this disease scientifically, then all of those opposed who "continue to debate the validity of MCS" (your Predecisional Draft, Foreword, Page 2) must also scientifically prove, with tests, their conclusions. Flawed, non-peer reviewed and questionable studies debating MCS should not be permitted in your report.

Our suggestions and comments on your report are attached. Please let us know it we can be of further assistance.

MCS/ADA INFORMATION

Multiple Chemical Sensitivity (MCS) is a disorder which presents with physical limitations in the body’s ability to process and combat exposures to both low and high levels of environmental chemicals. The disorder impairs one’s abilities in a range of limitations, which may include one or more of the following: concentration, breathing, walking and coordination.

Accommodations may include providing separate areas for those who have MCS where exposures to chemical products such as perfumes, cigarette smoke, gasoline, pesticides, petrochemicals and other triggers of the disorder can be mitigated. These chemicals may be found in new carpeting, paints, wallpapers, furniture, building materials and commonly used cleaning products.

Other accommodations may also include the use of alternative products, which are more readily tolerated by individuals with tics.

It would be a reasonable accommodation to notify patients with 14CS when out of the ordinary cleaning and remodeling is planned during their scheduled appointments.

It would be a reasonable accommodation to have available one scent-free staff member assigned to care for the needs of patients with MCS or related disorders such as asthma and other respiratory disabilities.
 
 

Prepared 1997 by Toni Temple, Chair ONFCI, with the assistance of Jeffrey J. Moyer, Consultant on Access, Member, Department of Justice ADA Implementation Network, (440) 442-2779, www.jeffmoyer.com

Predecisional Draft dated-August 24, 1998.
 
 

General Comments (supporting non-psychological basis of MCS)

We would like the committee to remember that there is no absolute, concrete scientific proof for many diseases and illnesses. There is no scientific test to prove a headache or backache, yet it goes without saying these conditions exist and physicians do treat these complaints without labeling their patients. No one questions why some people experience morning sickness, seasickness, allergies from bee stings while others do not. Yet many are questioning the fact that people with MCS react to lower levels of chemicals than the majority of the population. Why?

There is no scientific proof of the causes of most cancers. No one knows how breast cancer starts or can be prevented at this point in time. It cannot be diagnosed until it can be seen but that doesn’t mean it wasn’t there before. Why is there an increase in prostrate cancer and what is it being caused by? Why do more children have asthma today and why are learning disabilities and attention deficit disorders more prevalent? It is widely understood that many of these illnesses are being caused by chemical exposures.

Some people may be exposed to the same chemicals in a factory setting and present with different diseases. My daughter and I were both exposed to zinc chloride in the home setting from oxidizing galvanized metal in furnace ductwork. We both presented with entirely different symptoms and ultimately diseases. I now have MCS and a chronic vascular condition and my daughter required kidney surgery several years after the exposure. Prior to our symptoms, our sheep dog became hyperactive and lost control of bodily functions. We do not yet understand the long-term effects of low level chemical exposure on human beings, however, the above mentioned health crises certainly have causality in our complex and ever-expanding man-made world. It is also crucial to consider that individuals have differing responses to similar exposures.

The analogy I am trying to make is that MCS, (just one of the many diseases and illnesses one can get from exposure to chemicals) is being touted and labeled as being of psychological/psychiatric origin and yet, it is no different than many other diseases with one exception. We are the only ones who are able to identify the cause of our illness in a timely enough manner to cause serious liability problems for the offenders. While everyone knows that toxic chemicals can cause cancer, it takes years for cancer to develop. By then, there is no hope of proving where it came from. Those with MCS can immediately pinpoint the source of their illness. This is a threat to the chemical industry much the same as the cigarette industry is threatened (and fighting) studies on second hand smoke.

All scientists recognize that it is much easier to disprove a fact than it is to prove a fact. The chemical industry and its medical supporters have "disproved" MCS and have given us the unfair task of "proving" it. However, the fact remains that there is no "scientific" explanation or proof of the psychological theory origin of MCS.
 
 

Nutrition

This is probably the most important area of MCS research and has been totally neglected. There is a distinct relationship between MCS, proper nutrition, food additives and severity of symptoms.

Symptoms of MCS are not always consistent and could well depend upon the absorption of nutrients. The body’s ability to perform its functions is based upon this factor. Insufficient or inadequate nutrition can affect the oxygen levels in the body by blocking travel and absorption pathways. Lack of nutrition could well affect the blood brain barrier and spinal cord fluid, which obtains its nourishment from the bloodstream. The body’s homeostasis is ultimately affected by lack of proper nutrients. This is well recognized in the medical profession in regards to potassium.

1. Those with MCS suffer from severe food allergies after their chemical exposures (or the onset of MCS).
2. Certain chemicals in foods affect the digestion process and therefore the cells and immune system. This completely alters the way food is used in the body. In chemotherapy it is well known that the chemicals are affecting molecules in the fast dividing tissues and causing symptoms of nausea, hair loss and anemia. The parallel in similar symptoms from chemical additives in foods and other routes of toxic exposures must be researched. Perhaps the limbic kindling and olfactory nerve theories are only the end result and not the initial cause of MCS.


In addition, our saliva is key in chewing and digesting food. One major detox pathway for those with MCS (whose other pathways may be blocked) is salivation. Most people with MCS, can actually taste the chemicals they are being exposed to, similar to garlic/onion salivation reactions, and this must not be overlooked. The salivation is so extreme and unpleasant at times that those with MCS expectorate their saliva. This chemically altered saliva could well be affecting our enzymes and other digestive processes and causing typical symptoms of irritable bowel syndrome. Ingesting new chemicals in foods being eaten while detoxing others in the saliva also causes unknown synergistic effects. It becomes a vicious circle in which the body, in an automatic mode for survival, calls for further nourishment to dilute the chemicals it has already absorbed and is attempting to detox.

Unaltered enzymes are necessary for proper digestion. Any key components of digestion must not be interfered with. The body’s absorption of nutrients, vitamins and minerals can be dangerously affected by certain chemical exposures. Toxins can replace nutrients, but do not perform the same function in the body. For example, zinc replaces iron in the bloodstream (and mimics it in routine blood exams). This sets off a chain reaction, which disturbs the entire nutritional system and results in anemia. Digestion needs certain vitamins in order to absorb or otherwise function and if a mimicking agent has replaced these minerals or vitamins, the entire homeostasis of the body is seriously affected. In addition, nutrients required for normal daily functioning are instead being used to feed the "flight or fight" response antibodies and insufficient nutrition takes place as a result. Our body will leach nutrients from any major organ in attempts to stabilize, but at some point malnutrition is eventually inevitable. A good comparison is the effects of alcohol and street drugs on nutritional depletion.

It seems that some with MCS who have taken high doses of vitamins seem to do a moderate turn-around and improve as compared with those who do not. However, it has been a hit and miss situation in which no one seems to know which nutrient may have been deficient or which one caused the turnaround. The dangers of low potassium in the body are well known and have been well studied. Comparable research into other nutrients is key to MCS research. Improper use of nutrients can create other imbalances. For example, after my initial MCS symptoms, a physician prescribed moderate daily doses of Vitamin B-6 (not in complex), a diuretic and an anti-inflammatory. My MCS symptoms were exacerbated, numbness of the extremities began at that time and the initial onset of hives developed.

Food cravings should be studied for significance to deficient nutrients.

3. Those with MCS develop an intolerance for food additives such as preservatives, dyes, MSG, sulfites, nutrasweet and other artificial sweeteners and suffer severe seemingly unrelated symptoms when ingesting these additives. Some symptoms include arthritis, asthma, inability to mentally function, attention deficit, generalized pain, headaches, fatigue, depression, incontinence, indigestion and acid reflux.


The cause of obesity could well be linked to the body’s attempts to dilute the toxins being ingested, inhaled and absorbed. It is commonly known that toxins store in the fat tissues but, they are unable to be stored by themselves.

Nutritionists and dietitians must be better educated about the effect of chemical additives in the food supply on the human body. Low fat, diabetic and heart patient diets all contain harmful ingredients, which could well cause the very problems they are meant to prevent. Manufactured chemicals interfere with the normal function of endocrine glands and throw the body out of balance. Dyes can affect the nervous system and cerebrospinal fluid. Research needs to be conducted on how the blood brain barrier is being affected. The muscles can absorb what the body should eliminate through the kidneys and studies in this area are also warranted.

4. Many with MCS later present with diabetes and changes in body weight (extreme weight gain or loss or both), changes in metabolism, anemia and other nutritionally related disorders.
5. Many with MCS, even though they appear to be eating properly, do not properly metabolize their foods. They have protruding abdomens (comparable to the abdomens of those who are suffering from starvation), a sign that the body is not being properly nourished.


One of the first symptoms of MCS is the inability to eat foods previously tolerated. Indigestion, acid reflux, stomach pain, irritable bowel, nausea and bloating are typical. These symptoms greatly dissipate or disappear after the MCS patient learns to avoid food additives such as preservatives and dyes, etc., as mentioned in (3) above, as well as preventing other unnecessary chemical exposures.

If hydrochloric acid in the stomach is produced when we eat certain carbohydrates and protein, what happens when other additives such as pesticides, MSG, preservatives or other toxic chemicals are simultaneously ingested and combine with the hydrochloric acid and are then absorbed by our cells?

6. Studies indicating the alteration of DNA by formaldehyde have been published. Perhaps it is not the genes, which are responsible for disease at all, but rather the alteration of the genes by chemicals? Families generally live in the same homes and genes could be changed by common environments and not inherited. Until this is thoroughly researched, we will never know.

We feel it is urgent to consider the various stages of MCS. We may all appear to be presenting with different symptoms when in actuality we are at different stages of the disease process. In addition, some symptoms totally disappear but reoccur with certain chemical exposures.

For example, it is extremely difficult to concentrate after exposures to chemicals, particularly pesticides, disinfectants and petroleum fumes. This may be why so many with MCS claim inability to mentally function and then do well on tests when they are not being affected by the chemicals causing these problems. We feel the neurological symptoms must closely be studied with the nutritional aspects because nutrition is so closely related to the proper neurological functioning of the body. This is very comparable to using "bad gasoline" in an automobile. It does not matter how great the auto - it needs the proper fuel to perform efficiently and optimally.

Psychological, Psychiatric theories (including Classical Conditioning) vs. Chemically Induced MCS

ATSDR Toxicological Profiles and general literature on chemicals used in everyday life describe the same types of symptoms being experienced by those with MCS. Warnings are given in the tiny print of drug inserts and on the backs of cans and packages of pesticides, household products for painting, decorating, cleaning and remodeling. (The crossbones of yesteryear seem to have faded into extinction). Of interest to note is that nowhere in any of the toxicological literature or on warning labels is it even moderately suggested that those who experience these symptoms have a Psychological/psychiatric problem!

Housewives and others routinely use the same chemicals as do teens who "sniff" household products to achieve a mind altering effect for recreational purposes. Some of these teens die. Why is it then so difficult for physicians, chemists and scientists to understand the connection here? These chemicals not only cause death, they cause illness first. And not everyone dies. They get MCS.

In reading the package inserts of numerous pharmaceutical drugs, including anti-depressants, one will find that these drugs have been known to cause depression, seizures,, memory loss, dizziness, nausea, Parkinsonism, hallucinations, numbness, death and a host of other symptoms in some people. The package insert does not in any way indicate that the drugs cause these symptoms only in people with prior psychological/psychiatric problems, nor does it warn those with psychological/psychiatric problems not to use the drug. As a matter of fact, they encourage the use of the drugs for what they deem to be psychiatric problems, i.e., depression. Drugs contain dyes, preservatives and other chemicals people may react to similar to the reactions those with MCS have which are caused by chemical exposures or foods containing the same types of additives. There is absolutely no difference between what is happening to those with MCS and what the pharmaceutical industry admits happens to those who take their prescriptions or other drugs. Yet only those with MCS are labeled as having "psychiatric" problems. This simply makes no sense whatsoever.

"The fourth major cause of death in the U.S. is acute drug reaction." Journal of American Medical Assn. 1998 279 (15):1200-1205. What about all of the people taking prescription drugs who-do not die? Prescription drugs, as well as household chemicals, cause the same symptoms those with MCS experience. We are inundated with untested chemicals in our food, our clothing, our air, our medicine, and our hobbies. Is it any wonder we are ‘ getting sick?

Those physicians and scientists who claim MCS is of psychological/psychiatric origin have no scientific basis to prove their theories other than to flaunt their degrees and cite behaviors of those with MCS as falling into certain DSM categories. Most of these "behaviors" (especially depression) are known reactions to certain chemicals as evidenced in ATSDR’s own toxicological profiles. As mentioned in your MCS report there is debate as to which came first, MCS or the psychological problems. However, the scientific fact here is that not everyone with MCS has psychological/psychiatric problems so that theory does not hold any water. In addition, it is possible for a human being to have more than one disease or illness at the same time, i.e., a cold, high blood pressure and cancer. Enough said.

The psychological theory "experts" have failed to remember that one of the most basic human instincts known to man is the survival instinct. And, in MCS, avoidance of a chemical one knows will harm him is a survival instinct, not a "psychological" problem. Anyone with any common shred of sense would avoid anything that they have reason to believe would cause them harm. To diagnose an avoidance behavior as a symptom of depression and to drug that person with an anti-depressant, which makes him unaware that he is still being harmed because his body chemistry is now altered is professional drug abuse. This practice should be seriously questioned. Administering chemical drugs to an already chemically sensitive patient is adding insult to injury, and in most cases worsens the MCS condition, causes depression and sometimes leads to suicidal incidents.

In the Shusterman and Dager example given on page 32, the "suggestion" that MCS is an odor-triggered panic attack is without foundation and doesn’t make any sense at all when one considers that most people with MCS typically experience symptoms first and may or may not notice the odors later when they are trying to determine what made them sick. Physical manifestations may not even appear until hours after the toxic exposure (i.e., hives, swelling, inability to digest food properly, arthritis, memory loss, fatigue, etc.)

Some are affected by chemicals without having smelled any odors whatsoever. The heightened odor sensitivity that first presents with the onset of MCS lessens with time and the avoidance of triggers. others lose their sense of smell completely. It is a well known fact that chemicals and drugs absorb through the skin into the bloodstream and can be absorbed through the eyes directly into the bloodstream. For example, someone wearing a new fabric treated with formaldehyde and fire retardants may not experience any reaction until after physical exertion - their sweat releases the chemicals in the fabric by moisture. Another example would be protective eye goggles used by chemists to avoid not only the splashing of chemicals into the eyes, but the fumes as well. Many, including myself, wear a respirator to lessen the effects of chemical exposure. However, while the respirators may eliminate inhalation of odors, they do not totally prevent chemical exposures. Many notice cigarette smoke in their hair and on their clothing. Those with MCS are aware that chemical residue also attach to their hair and clothing and cause health symptoms until the offenders are removed.

MCS does not at all meet the criteria for the Classical Conditioning model.

The example by Kurt 1995 that MCS is a symptom complex resembling panic disorder is just what your report indicates. It is his belief. He has offered no proof that MCS fits the DSM-III-R description, only his belief that it "resembles" it. And ‘ because he is an "expert" and we are not, and most people think the experts are the only ones who have any authority to speak, he can damage our reputations and lives in one fell swoop with those careless words.

Reiterating what we have said elsewhere in this response, chemicals, as evidenced by the information in your toxicological profiles, cause many symptoms and the "fight or flight" response automatically kicks in when the body senses danger ‘ Would one panic if he felt his life was suddenly in danger. Of course. According to Kurt, it one woke up to find his house on fire and panicked that too would resemble a DSM-III-R description taken out of context. And that is exactly what is happening to those with MCS who are being labeled in this manner.

We totally disagree with your recommendations, on page 34, that psychological factors should be carefully evaluated in the diagnosis and treatment of patients who have MCS. Of first and uppermost importance is to first find out what is causing the symptoms and not wasting precious valuable time on psychological causality. Otherwise, the patient will suffer irreversible further harm and damage by additional exposures to the incitant causing the permanent health injuries. I would be dead today if I had opted to follow traditional medicine’s way of thinking. I was dying of anemia, which could not be diagnosed in a routine blood exam. Therefore, my symptoms which physicians could not properly diagnose left them only one conclusion - depression. I knew I had experienced a major exposure to zinc chloride and later learned that zinc had replaced most of the iron stores in my body and mimicked it in the blood tests. A ferritin iron level of my blood (a year after the onset of MCS and my disability ) showed my severe anemia. I am alive today only because I read the ATSDR profile on zinc and shared it with my physician. Had I bought the "depression" diagnosis (as many sadly do) and taken anti-depressants instead of iron treatments, I would be dead today. As it stands, I am totally disabled but wouldn’t be if my original family physician had believed me and given me the appropriate medical care. Even though we do have certain laboratory tests available does not mean they are infallible and absolute. They are meant only as guidelines to be used by physicians who should be observing both their patients’ bodies and listening to what the patients are telling them. if I knew then what I do today, I would have avoided what I knew was making me sick (even though physicians stated I was healthy by their limited criteria). Massive education of physicians in toxicology and nutrition is mandatory to prevent disability and save the lives of those who are being misdiagnosed and placed on dangerous drugs.

Many with MCS have lived through these types of situations and are shocked by not only the lack of knowledge the medical profession possesses but at their attitudes and biased, unscientific opinions, which pronounce us as to, be a psychological/psychiatric entity. Yes, we are angry. We have not been treated fairly, have been cast out from society and then labeled. Self-abusers who are drug addicts and alcoholics not only get empathy and medical care, they have shelters and receive disability pay. We, on the other hand, have been unwillingly poisoned and now must suffer the consequences of a society who would blame us somehow for not being able to be "tough enough" to withstand the chemical onslaughts as others have done. Who wouldn’t be angry? But we have taken this anger and acted constructively. We have educated ourselves and then helped each other because the medical profession wasn’t there for us. We have organized support groups, written to Congress, written books and newsletters, volunteered for studies, attempted to educate others and have been responsible for many other positive studies and developments including congressional funding. Does this type of behavior fit into a DSM category. We think not.

While, as indicated on page 24 of your report, most studies show a preponderance of patients with MCS who are females from 30 to 50 years of age with an above average socioeconomic status, it is quite easy to explain the reason for this. Females typically not only work outside the home but also do the home cleaning and the laundry and are thus more exposed to toxic chemicals in the products they use, especially those designed to save time and eliminate elbow grease. Many females hang their own wallpaper and paint their own walls (or are exposed to the fumes created by the professionals doing it while their husbands are at work).

They typically spend more time in the home and are therefore closed up with more new carpeting, new furniture and other remodeling fumes as well as those created by the furnace, plumbing and other repairmen. Females give birth to children and are therefore exposed to more drugs, anesthesia, medical treatments, tests and hospital exposures. Females typically prepare the food and are exposed to pesticide residues while cleaning fruits and vegetables. They handle raw meat, cracked egg shells and other uncooked food. They do the laundry, using spot removers, bleaches and fabric softener containing glutaraldehyde. They sit in schoolyards where buses emit toxic diesel fumes waiting for their children. Women have been given artificial estrogens for reasons of birth control, change of life medications, prevention of cancer and osteoporosis. Many products now used in the home (especially plastics) mimic estrogens and pass through estrogen receptors. The list of reasons is endless and must be considered. Women typically have more chemical exposures than men. It is as simple as that.

Rather than focusing on the imagined hypothesis of the immune systems’ ability to be "conditioned" by psychological stimuli, the focus should be directed on the disruption of the proper functioning of the digestive system and resultant inability to absorb nutrients. There is no known cause of the common cold, a condition in which the patient can have a host of varying symptoms. The cold has not been labeled psychological and is unquestioningly accepted by physicians and the drug companies because it is a multi-million dollar business.

We hope you will not be led off the path we need to go down by the chemical industry who would misdirect you and prefer for you to study our "psychological problems". That would give them much more time free of any liability for the health harm they are causing.

Numerous beneficial correlation studies could be conducted that would give you far more information and conclusive proof of what is actually occurring. Our recommendations for studies such as these are included in this response.

Recommendations:

1. Public Education. Provide educational pamphlets to each citizen (similar to booklets given to citizens several years ago to educate about AIDS) to prevent MCS disability and other diseases caused by chemicals. Included should be information concerning the necessity of using caution in the handling of ordinary household chemicals and pesticides, dangers of mixing chemicals, proper ventilation during chemical use, the importance of reading labels, and other informative data. Education in this area has been too lax, and laws non-existent or non-enforced, resulting in illness. People must be taught how to make proper, informed choices about dangerous products and to learn how to protect their health.
2. Medical Testing and Chemical Laboratory Studies Combined.


Existing chemical laboratory testing must be made available to and accepted by the medical profession. Sputum can be analyzed for contents by spirometry it you have some indication as to what you have been exposed to. The only test known to the typical general medical profession for sputum is one used to measure bacteria. I was coughing up blood and a blue element and already had knowledge that there was zinc chloride both in my furnace duct and dust samples of my home. At least twenty physicians totally ignored these facts when the "recognized’ sputum test for bacteria was "normal’ even when I presented them with the sputum test showing zinc chloride in my sputum found through valid chemical laboratory spirometry procedures. The chemists were appalled and amazed at this total lack of response to a dangerous exposure, which needed medical attention. I did not get the medical attention and am disabled as a result.

A testing problem which is very difficult for those with MCS is that by the time they are able to obtain medical treatment and have blood and urine samples taken, the elements exposed to have dissipated in the blood stream and cannot be accurately measured. This would also account for inconsistent and difficult to reproduce test results. At the same time, the chemicals have stored in the fat cells and can re-enter the bloodstream during exercise. Perhaps more accurate testing could be obtained after certain exercise procedures, similar to heart stress testing on a treadmill.

3. Conduct Correlation Studies. The occurrence of MCS has considerably escalated in the past 10-15 years, along with episodes of childhood asthma, certain cancers, learning disabilities, attention deficit disorders, MS and the diagnosis of depression among others.


Correlation studies comparing ingredients found in products that have been manufactured during this same time period could prove the relationship between chemical exposures and MCS.

• The use of plastic milk bottles and food containers instead of glass and especially the use of plastics in the microwave (recent research has found that some plastics are endocrine disrupters)
• The tremendous increase in the use of lawn and tree pesticide application services on a routine, scheduled basis. Studies comparing pollen allergies vs. pesticide exposure through the same method of transportation - wind blowing - may document pesticide sensitization, not pollen allergy in numerous cases
• Changes in food supply due to extensive dangerous use of pesticides while growing, harvesting, shipping and preserving (the use of waxes containing pesticides). Pesticides are known endocrine disrupters.
• Relationship between arthritis and the chemicals used to gas bananas
• Hidden contamination of the food supply (yellow dye fed to chickens so the yolks appear more yellow; chickens soaked in MSG, nutrasweet and formaldehyde for longer shelf-life, etc.)
• The dangerous practice of routine indoor pesticide application services on a routine, scheduled basis. Many apartment buildings, including those for senior citizens, insist on the removal of all food from kitchen cupboards monthly for mandatory pesticide spraying.
• The change from leaded gasoline to other components in gasoline including MBTE, BHT/BHA (known to cause breathing difficulties and also used as an additive in foods and packaging materials), and other harmful chemicals
• Careless and unnecessary use of food preservatives, dyes, MSG, nutrasweet, sulfites and other food additives and their resultant effects on proper nutrition, behavior, metabolism, arthritis, the vascular system, mental functioning and other health effects.
• The common practice of selling pesticides and pesticided flowers in grocery stores. The pesticide residuals can leech into the food supply through air circulation, grocery carts and checkout counters.
• The predominant substitution of artificial chemicals for actual ingredients, i.e., chemical blueberries and yeast "nutrients" and other substitutes in the bread supply (our staff of life?)
• Addition of sodium benzoate to virtually all soda pop. Sodium benzoate is a pharmaceutical drug used to correct metabolism disorders
• Changes in food supply due to antibiotics and hormones used for animals and animal feed
• Unwarranted increase in the general use of antibiotics
• Relationship between number of x-rays and chronic fatigue symptoms
• Relationship between exposures to heating plastic tapes and other plastic components of VCR’s and chemical sensitivity, asthma, arthritis, chronic fatigue, attention deficit, etc.
• Unwarranted increase in the use of prescription and over the counter drugs brought about by drug advertising and promotion (this practice should be abolished)
• The use of computers by practically everyone. They are manufactured from inexpensive plastics (including the wiring) which outgas petrochemicals, ozone and other dangerous components and create electromagnetic fields as well
• Homes constructed with attached garages and offices and other public buildings having underground parking garages which permit automotive fumes to enter the indoor air supply
• Use of synthetic carpeting and glues vs. natural fabrics Health effects from isocyanates in foam used in furniture and other products
• Health effects from carbonless paper, chemically treated paper, perfumed papers, coated fax papers, etc.
• Use of fire retardants and pesticides in mattresses (probable cause of impotence, sleep apnea, acid reflux ‘ depression, attention deficit disorders, insomnia and other sleep disturbances, anxiety, chronic fatigue syndrome, SIDS and other disorders as well as MCS)
• Use of numerous untested dental materials, bonding agents, solvents and plastics which are not regulated or even required to be listed in one’s dental records
• Hot water heaters which are now manufactured with plastic liners rather than glass
• The prevalent use of air fresheners containing paradichlorobenzene (increase in asthma as well).
• The prevalent use of disinfectants (even more pronounced after the discovery of AIDS) especially in hospitals and nursing homes
• The prevalent use of ammoniated cleaning products which are most likely causing synergistic reactions with the chlorinated water they are mixed with or other cleaning chemicals that are poured down the same drain
• The prevalent use of fabric finishes and fire retardants on clothing, especially sleepwear for children, as a result of the carelessness of a few. This practice legally protects the industry and not the people who are subjected to breathing these chemical fumes while they sleep (or try to sleep). The benefits of using these products do not exceed the risks of using these chemicals.
• The use of latex has replaced many other materials and is commonly used in shoes. When feet perspire, these materials can be absorbed into the bloodstream and can cause the same symptoms the medical profession is experiencing with the use of latex gloves.
• The prevalent use of man-made fabrics vs. natural materials causing the resultant use of fabric softeners made out of plasticizer and petrochemical based perfumes.
• The use of indoor air cleaners which produce ozone
• Study the relationship between exposure to molds and depression. Investigate why mold exposure caused death in several babies (Cleveland, OH/Raindbow Babies & Children's Hospital) and how it may have also affected adults and older children living in the same household.
• The change in chemical composition of laundry detergents (replacing phosphates with chemicals and enzymes which are causing serious health problems; addition of petrochemical perfumes, etc.)
• The unregulated use of petroleum products and other dangerous ingredients in perfumes and cosmetics. In addition, the synergistic effects of some of these chemicals are obvious. For example, many cosmetics contain ammonium and other ammonia products, which are then washed off with chlorinated water. A basic chemist knows that you cannot mix ammonia and bleach (chlorine)
• The common use of humidifiers, which are connected to furnaces and thus cannot be properly cleaned. In addition, they add moisture to galvanized metal ductwork, thereby causing oxidation of zinc, a component in galvanized metal, which has been known to cause metal fume fever.
• The common use of air conditioning, which creates condensation, especially on ceiling, tiles, thereby breeding mold and releasing chemical products from the wet materials, which are then spread through the ventilating system . The massive network of freeways which concentrate automobile pollution in certain neighborhoods. Compare the health symptoms of those living near freeways with those who do not to find correlations for those sensitized to chemicals (having MCS).
• Research typical prescription and over the counter drug use by those with MCS prior to the onset of MCS. Research prior adverse reactions and relationships to disability, how often medications of any kind were typically used and various combinations of drugs which may have been used. For example, I presented with pulmonary emboli from birth control pills. Twenty years later, with no obvious health effects during the interim, I presented with deep vein thrombosis from simultaneous petrochemical, mold and zinc chloride exposures. There is a definite relationship to toxic exposure and vascular system affectation.
• Find the "common denominator" chemicals, which cause the triggering of symptoms. Some perfume companies and food manufacturers have already removed certain chemicals from their products (i.e., BHA/BHT and aroma enhancers). It may be as simple as finding one or two chemicals commonly being used as the cause of many of these problems.

"Dr. Mom" and other similar pharmaceutical advertising is nothing more than the cute promotion of legal drug abuse and should be completely abolished. Our society has forgotten how to be self-sufficient, self-reliant and responsible and does not even attempt to prevent their illnesses. As evidence, the many television ads for drugs, which will prevent indigestion and acid reflux. Why are people eating foods, which make them sick in the first place? The drug companies and physicians (the experts) promote this type of behavior. We have been literally brainwashed by pharmaceutical advertising and everyone is looking for the quick fix to happiness, as postulated in the 20/20 (ABC News) program on Prozac.

When considering that most chemical companies manufacture the products that cause our illnesses and also own the pharmaceutical companies who manufacture the medications which attempt to resolve the symptoms created by the chemicals they manufactured, is it any wonder that they will not acknowledge MCS nor contribute to related research? Further, industry is monitoring itself and this must not be allowed to continue.

What ever happened to the medical practice of simple observation of a patient? In those with MCS, exposure to a chemical trigger can cause skin color changes, memory loss, personality changes, sudden need to eliminate, changes in the voice, arthritic conditions and other symptoms which are readily apparent, evident and can easily be observed. We venture to guess that oxygen deprivation to certain body organs is somehow involved in this process and cannot be measured with the oxygen testing method currently in use. In addition, when muscles tighten, blood flow (and thus oxygen) is restricted. Many MCS patients improve with care by chiropractors and physical therapists that manipulate the flow of the spinal cord fluid thereby causing better distribution of oxygen to the brain stem. The medical profession cannot and must not see current available limited testing as being absolute, infallible and the final word, but unfortunately, this is what is being done.

By copy of our report to the legislators listed below, we hope to spark a bill, which would call for a tax on the manufacture, sale, distribution or purchase of any toxic chemical (defined to be any chemical, which is capable of producing an adverse health effect). Such tax would be placed in a fund for independent, grant funded research and studies of the health effects of chemicals on the body and related research in attempts to prevent these illnesses from occurring in the first place, rather than looking for quick fixes after the fact. The ploy of the drug companies has been to tout the context of benefits and risk. One might ask "benefits to whom"? ... and "risks" to whom? Industry has been totally careless in monitoring the related health problems. An impartial opinion is essential.

It is important to note here that there are controversial treatments for MCS, just as there are controversial treatments for any and all other diseases. None of them is foolproof, but someone does have to be the guinea pig. Does it make it more ethically moral when hospitals pay patients to be volunteers in studies on new drugs? Was the first heart transplant proven to be-safe or experimental? Is AZT ‘scientifically proven" to be effective and isn’t it a toxic, dangerous drug? What about chemotherapy? Doesn’t it also harm the patient? The solvents and glues used in dental materials aren’t even required to be listed on medical records and there is literally no place a dental patient experiencing adverse reactions can look to for oversight or redress. But, only those physicians dealing with MCS treatment are being chastised. Why?

We must take a strong look at the long-term and synergistic effects of Rx and over-the-counter drugs. Physicians must take more responsibility for their casual dispensing of drugs and not leave it up to pharmaceutical computers whose sole purpose is to prevent liability through disclosure methods.

Those with MCS are desperate for "treatment" of any nature, merely because they have been trained to believe (brainwashed) there is a pill (or should be) for every ailment. Even women with breast cancer are out marching for a "cure". How many of them are encouraging research for prevention? We have placed our very lives in the hands of the pharmaceutical companies and it can only get worse from here.

MCS must be studied as its own entity. Many other diseases are related to exposure to toxic substances and it is only through discovering these correlations that progress will be made in other areas of disease as well. Studies involving "field work" of MCS are crucial to avoid unnecessary exposures. Data could be recorded by observation of the MCS patient during a typical day or two.

We have attached a copy of our definition of MCS, which we hope you will seriously consider for use as it very simply defines and can be used by all as a baseline of research. Please see the first paragraph of the enclosed MCS/ADA Information sheet.

It is our hope that you will seriously consider our comments and expand your research into more applicable areas. We look forward to your comments and those to whom we have furnished a copy of this report. It you have any questions or require further information, please let us know. Thank you very much for the opportunity to comment.
 

Toni Temple, Chair

OHIO NETWORK FOR THE CHEMICALLY INJURED
P.O. Box 29290
Parma, Ohio 44129
(440) 845-1888
 

CC: President Bill Clinton

Vice President Al Gore

U.S. Senator Mike DeWine

U.S. Representative Sherrod Brown

U.S. Representative Joseph Kennedy

U.S. Representative Steve LaTourette

Ohio Governor’s Council on People with Disabilities