Transcript for
Multiple Chemical Sensitivity:
A Life-Altering Condition

Opinions expressed by those interviewed in this documentary are not necessarily those of the filmmakers.

The patients in this video are identified by their former occupations. Most are no longer able to work because of the chemicals they encounter in the workplace.

This Johnson/Startzman film is a composite of several of our earlier documentaries.

Hadn't really focused that much on how dangerous the paints were, you know. We knew when we read the back end of a paint can that it said it will cause this and cause that and cause this and cause that, and we used to laugh and say, why don't they just say it will kill you.

People just don't understand how sensitive you can be and how sick you can become from, you know, household cleaning products or their perfume or their aftershave or little things like that.

Mothballs are horrible. You know, you walk by a little old lady that's had her stuff stored in mothballs for the summer and it's nauseating, and it's those simple everyday things of life that can make you very ill.

When I was painting, the crew and I would joke about the fact that we were killing brain cells.

Alison Johnson: Hello. I'm Alison Johnson. For over a decade I have been writing books and making documentaries on the subject of multiple chemical sensitivity, or MCS. In the twelve years that have passed since I produced and directed my first documentary, Multiple Chemical Sensitivity: How Chemical Exposures May Be Affecting Your Health, more and more people have been succumbing to this condition. Hardly a day goes by that I do not hear from someone who is close to despair because they see their former life slipping away from them as they struggle with a condition that the medical profession has largely ignored.

For decades there was great resistance to the idea that smoking could be a health hazard. Today there is a similar resistance to the concept that exposure to the ever increasing number of toxic chemicals in our daily lives could cause health problems.

Narrator: Humans have evolved over millions of years in an environment of relatively clean air, earth, and water. Since World War II, however, tens of thousands of new chemicals have entered the marketplace and the safety of most of them has not been verified by any government agency. According to a General Accounting Office document from 1994, over 70,000 chemicals are in use in the United States. Although these chemicals are an important part of our economy, they are often toxic and can have adverse effects on human health.

Michael
Arborist and licensed pesticide applicator

When I finally realized that I was becoming sensitive, the first thing that I noticed was that I was having trouble with foods and didn't make the connection that I was having trouble with the pesticides themselves until I noticed I would get sick being around the trucks that had the pesticides in them. Didn't seem to make much sense, but I started to avoid being around the trucks full of pesticide. One morning while spraying a hospital, I broke out in a rash pretty much from head to foot even though I wasn't actually spraying the chemicals myself. I was just nearby supervising. And I got real sick, came down with, you know, what I thought was the flu at the time, basically just never recovered.

I still have to be really careful because all I need is a slight exposure, and for some reason, petroleum will really set me off, different kinds of household cleaners, different things will just set me right back.

One of the things that happened after I got sick which was the business with the fatigue. I couldn't stay awake for more than three or four hours at a time, and that lasted for easily over six months. I can remember getting up in the morning, sending the guys out to work, coming home at 10, 10:30 in the morning, falling asleep and staying asleep till the middle of the afternoon, waking up when they would come back in, you know, putting the trucks away and stuff and go back to sleep right after dinner, 6:30, I mean, you know, sleep for 12 hours and get up and still be exhausted, like there was no amount of sleep that would cover it.

William Meggs, M.D.:

Alison Johnson: A few years ago a taxicab driver from Las Vegas e-mailed me to say: "I was making good money driving a taxi and had to resign because the other driver would spray it with air freshener. Eventually the cab made me so sick I had to quit." In fact the city of New York has banned the use of air fresheners in all its city cabs. This taxicab driver is just one of millions of Americans who are trying desperately to hold on to jobs that are damaging their health and making them sicker with each day that passes.

Narrator: Christine Oliver, at Harvard Medical School, is the director of Occupational and Environmental Medicine at Massachusetts General Hospital.

Christine Oliver, M.D.: Multiple chemical sensitivity, or MCS, is a multisystem disease that is characterized by symptoms associated with exposure to low levels of chemical vapors. These levels of exposure are commonly found in the ambient environment. Systems that are affected by MCS include the respiratory system, the neurologic system, the gastro-intestinal system, the skin in some cases.

For those with less severe illness and disease, symptoms may include cough, shortness of breath, headache in association with the exposure to chemicals on an elevator, or when they open a magazine and have a scented insert in the magazine. For those more severely affected, however, symptoms can be truly disabling. They interfere with a person's ability to engage in gainful employment. They interfere with a person's ability to use public transportation. They interfere with a person's ability to live in a multifamily housing unit. They interfere with family life. They are isolating in short. Individuals with MCS often feel very isolated. I see this in my patients at MGH. One reason for their isolation is that physicians do not get this disease, they don't understand this disease. Medical students are not taught about multiple chemical sensitivity. Physicians in training know very little about multiple chemical sensitivity, or MCS.

Alison Johnson: Some MCS patients have relatively mild cases. I myself was fortunate to be able to reduce the chemical exposures in my life sufficiently that I could return to normal activities. For many people with MCS, however, the condition is quite debilitating, even life-threatening. Unfortunately, MCS often makes it almost impossible for people to maintain their social life, to keep working, or even to find a safe place to live.

Bennie Howard: Hello everybody. My name is Bennie Howard. I'm the Acting Director of the Office of Disability Policy at the U.S. Department of Housing and Urban Development in Washington, D.C. Federal laws, specifically the Fair Housing Act, Section 504 of the Rehabilitation Act, and the Americans with Disabilities Act, prohibit discrimination on the basis of disability. HUD considers multiple chemical sensitivity to be a disability under these laws.

Chip
High school history teacher

I'm a high school history teacher from Washington State, and I became very ill working in my classroom. Mold was discovered in my classroom, and I became very sensitive to mold and later developed multiple chemical sensitivity.

William Meggs, M.D., Ph.D.
Brody School of Medicine
East Carolina University

Molds have become a very big problem. Well, they've always been a big problem, but the awareness of the problems of molds have really increased recently. Molds can cause problems in two ways. One is people can have immunological reactions to the proteins on the mold spores. They can be allergic to them. They can get hypersensitive pneumonitis or other problems associated with the proteins on the mold spores. But there's another problem with molds. When you have high concentrations of molds such as in a damp, moldy basement or whatever, the molds actually produce what are called mycotoxins, and these are low-molecular-weight chemicals that get in the air, and they can be very irritating to the respiratory system, particularly in people who have asthma, chronic sinusitis or rhinitis, or other chronic respiratory conditions.

Chip: As a result of this, my workplace environment became very difficult. I became sensitive to some of the products we were using in the classroom, magic markers, white-board markers, the shampoos they were using to clean the carpet, and some of the cleaners that they were using. I initially discovered this by losing my voice. I became very hoarse, and as a coach and as a teacher, you can understand how that became very difficult to do my job. Ironically, I was an All-American wrestler in college, and everybody was very surprised when I became very ill and had many different symptoms - headaches, I gained a considerable amount of weight, I had a lot of fatigue and basically was very lethargic, didn't have a lot of energy as a result of these acquired sensitivities.

My workplace environment did improve a little bit once the school decided to move me into another classroom that was not infected with mold. It was very challenging and very difficult to do my job. The students I had to ask not to wear perfume, which was awkward for some of these younger kids that really didn't have an understanding or a sensitivity to the possibility that people react to various chemicals.

Alison Johnson: People with multiple chemical sensitivity serve as the canaries in the mine that alert all of us to the dangers of exposure to toxic chemicals in our daily lives. Efforts to accommodate these people may well help improve the health of all of us and help reduce rapidly escalating health costs that our society faces.

Randa
State employee, land use planning

I worked for a land use planning agency in San Francisco, California, for ten years. Then I came to work on a Monday morning, and they had glued down new carpeting over the weekend, and I immediately started having very severe reactions to the carpet. I couldn't think straight, I couldn't talk straight, I couldn't walk straight, I couldn't compose a simple letter. I had pain in my chest, I had swollen lymph nodes, I had burning in my lungs.

The reactions the physical reactions, just continued to build and increase. I tried to come to work and on the weekends I would sleep all weekend so I could come to work the following Monday. I could barely climb the stairs to my office. I had to pull myself up by the handrail, I was so severely fatigued.

I had no idea what it meant to have any problems with anything, very healthy, went hiking in the Himalayas, and I then became a person that could barely get out of bed.

I started reacting to copier fumes in the office, to the smell of the copy paper, to peoples' shampoo, to their laundry products, to the files that I had to use. They smelled moldy. And we had a new secretary who wore a lot of perfume, and I could barely even walk by her without feeling like I was going to pass out.

Alison Johnson: Many people with MCS are so sensitive to fragrances that they virtually become prisoners in their own home, unable to attend church, work, classes, or social gatherings because of the perfume, aftershave, shampoos, detergents, fabric softeners used by others. To make matters worse, some of those who insist that MCS is just a psychologically based illness state that these people are suffering from agoraphobia, or fear of crowds. That's as cruel as saying to a paraplegic in a wheelchair, "Too bad you don't like to walk."

Alberta
Nursing Instructor

I have a tendency to migraines, and what can happen is, I'll go into one of these situations with carpet or paint or whatever, I will get what I call an allergic headache. And if I stay in that situation too long, I end up with this horrible migraine, and then it lasts two or three days and I'm nauseated and I'm kind of incapacitated for a long period of time, which is really very bad because I'm a very busy person. I'm a mother, I'm a wife, I'm very active in my church, and I teach, and I just don't have time for that. So basically the way I manage these things is by avoidance because that keeps me healthy enough so that I can, I can work every day. You need to know what you need to get away from and how fast you need to get away from it in order to not become ill.

Alison Johnson: One reason that the medical profession has found it difficult to understand multiple chemical sensitivity or MCS is that patients with MCS can have a wide variety of symptoms as the result of chemical exposures, with different patients having different symptoms. A given patient, however, will usually have the same symptom in response to a given exposure, perhaps getting a headache after exposure to paint or getting arthritic pains after exposure to natural gas.

Common MCS Symptoms

• Headaches
• Migraines
• Extreme fatigue
• Muscle pains
• Joint pains
• Difficulty concentrating
• Insomnia
• Irregular heart beat
• Asthma
• Sinus problems
• Depression
• Eczema
• Rashes
• Memory problems
• Anxiety
• Bloating
• Nausea
• Vomiting
• Intestinal problems
• Seizures

Gunnar Heuser, M.D., Ph.D.
NeuroMed & NeuroTox Associates

A SPECT scan is a scan where the patient is given a radioactive material. The radioactivity travels to the brain, the computer picks it up, and wherever the activity is, that implies in a SPECT scan that blood flow is a given value. So then you get a colored picture, and the colored picture tells you whether your blood flow is higher than normal, normal, or less than normal. And if you do the SPECT scan that way, in a new way, we can now show where the abnormality is in such a way that everybody can understand it, and these are scans which we call three-dimensional SPECT scans, and the one I brought shows various parts of the brain - one from the left, a view from the left, a view from the right, front, and back. And if you look, then you find that the blue areas are the impaired areas, so on that particular scan we have compared my patient, who happened to be disabled from chemical exposure, with a control group. And in this particular patient, we find that there are areas on the SPECT scan which show impairment, and that impairment correlates with what the patient complains of—memory problems and other problems. So that's a SPECT scan.

Tony
Industrial painter

I was raised down here in Cajun country, and down here we've got oil fields and offshore work and that kind of thing. It's our main industry down here, is oil. When I was 18, I went to work offshore. We used to go out there, I remember one time we went out there, and we had an eight-legged platform and a crew of six men and we sandblasted and painted that whole thing from one end to another.

Anyway, I was always breathing MEK, which was a cleaning solvent that we used regularly every day. It was an everyday thing. Guess it was around Christmas of 1988, I landed a job with some people that wanted somebody that didn't want to go offshore. Everybody was screaming to go offshore; you could make more money. And I had had my fill of offshore, I wanted to work on land.

But then I would go and drive trucks and everything. I was getting to where I was driving trucks more than painting. When I was getting away from the sandblasting and painting, gradually getting away from it like that, I was beginning to notice that every time I did spray paint and I sprayed paint, in particular urethane paints, that contained isocyanate, that I had to have a respirator on just to mix it. It got to where I couldn't tolerate the MEK, and I was having this sort of like a pinching sensation in my chest, you know, every time I got around this MEK or that urethane paint.

This guy came over and wanted his boat painted. I would go in and out and in and out of this welding shop that didn't have any kind of ventilation or anything like that, and I couldn't open up the doors because there was sand everywhere and the wind would blow the sand in on the pretty boat. The man wanted his boat done to perfection, and so going in and out and in and out and putting my respirator on and off and on and off and painting outside and painting inside and all of that, it was just, I think my body just reached a level where, you know, that was it, like I crossed some sort of a line or something.

Narrator: The next morning Tony woke up feeling as if he had a chest cold, and a few days later he was hospitalized. When he returned home, his health continued to deteriorate.

Tony: By this time, my ankles began to feel, it felt as though I was walking around with sprung ankles, and the bottoms of my feet were like on fire. I couldn't walk from the sofa to the bathroom. I was in a bind. I'm a single parent. I had to sit in a chair, you know, to wash dishes and stuff. I just, I literally just couldn't hardly do anything. Finally, you know, I was getting hungry. It was about three weeks, running out of money and all that. So I went to the doctor, and I asked him, I said, man, "Are you going to let me go back to work?" or whatever. And he was totally against it. By the second day that I was there, they had me loading a truck to go to Texas, the same diesel-driven truck. When I came back home that night on the Interstate, man, I thought I was going to die. The next day I went into work to tell them that I just can't do this, man. About that time the doctor, that pulmonary function specialist, had called me with the results of the SPECT scan. He said, "You've got slight brain damage."

Narrator: From that point on, Tony was never able to return to work again, and he remains highly sensitive to a wide range of chemicals.

Gerald Ross, M.D.
Environmental Health Center, Dallas

What we do know is that in the metabolic scans that are done on the brain function of patients, we very clearly see that there is a change and a difference in the brain function of chemically sensitive patients that is not psychological, that it looks entirely different, the metabolism of their brain looks entirely different from what is seen in, say, schizophrenia or depression or other psychiatric conditions. The metabolism in the brain function of chemically sensitive patients is most closely alike to that which is seen in patients who have been toxically exposed to things, to chemicals.

Often there is a toxicity that goes on in their brain metabolism that correlates with what the patients report as far as some of these symptoms of anxiety or depression, or they can't think, they can't remember, they lose their sense of direction. Those kinds of symptoms have been associated with neurotoxicity for many, many years.

Alison Johnson: Four cataclysmic events have rocked the United States in the last two decades: the 1989 Exxon Valdez oil spill, the 1991 Gulf War, the destruction of the World Trade Center in 2001, and Hurricane Katrina in 2005. At first glance, these events might seem to have little in common, but all have left in their wake tens of thousands, perhaps hundreds of thousands of people who are now chronically ill after exposure to large amounts of toxic chemicals. In my 2008 book Amputated Lives: Coping with Chemical Sensitivity I write about the devastating effects of these major toxic exposures.

William Meggs: Dr. Lea Steele, an epidemiologist, published a study in the American Journal of Epidemiology in November of 2000 which documented that over 200,000 people who served in the first Gulf War are now chronically ill. That's over one-third of those who served.

Dr. Ronald Blanck: In the mid-1990s, I commanded Walter Reed Army Medical Center. I continued to work on looking for causes for the illnesses suffered by many Gulf War veterans, illnesses that were clearly more than stress related. I looked at vaccines, I looked at exposure to smokes, to other toxic chemicals, petrochemicals, and so forth, all that were part of that battlefield experience, and I came to the conclusion that at least one of the explanations was multiple chemical sensitivity, something where a variety of toxic elements even at low levels by themselves in combination may in susceptible individuals be causing these illnesses, and I believe so much more work needs to be done on that, but it is clearly one of the explanations.

SGT Roy Twymon
U.S. Army

Since I've been back from the Gulf War, I also notice that lots of things bother me that never bothered me before. Different perfume, different cologne, gas, different smell of even smoke or cigarettes, I just automatically get sick, and sometimes it takes me days or weeks to recover.

One day I was on an elevator and someone got on there with some loud perfume, and then all of a sudden it hit me, and I got lightheaded.

Narrator: Roy's blood pressure shot up so high that the emergency room staff thought he was having a heart attack. He ended up spending four days in the hospital.

SSG Tim Smith
USANG (Retired)

You know, the chemical sensitivity is just becoming unreal, and you notice it now. It's before when you used to pump gas, you'd stand there and smell the fumes, you know, great, you know, this stuff don't bother me. Now it's you have got to try to hide and pump at the same time.

SFC Sherry McGahee
U.S. Army (Retired)

Narrator: During the Gulf War, Sherry McGahee served as an intelligence analyst.

Sherry McGahee is a single mother of five children and four grandchildren.

Sherry McGahee: I've been gradually getting worse off. I don't know really what's going on with me. I am fighting to be a meaningful person in the community.

Gerald Ross, M.D.: One of the things about investigating patients with Gulf War illnesses, Gulf War syndrome, is that there are now some very high tech, very objective measurements that can be used that are really very different from the subjective things that they say, "Well, I have this and this and this and this wrong with me." We can now do imaging of the brain metabolism, and there are two different types of high-tech imaging technology, one called SPECT and the other one called MRI Spectroscopy, which are really very different, but they both confirm beyond any doubt that the metabolism in the brains of patients who are reporting the Gulf War illness symptoms is distinctly abnormal, and it is abnormal in a way that indicates that there is a toxicity and a damage that has occurred in the brains of these veterans.

SFC Sherry McGahee: I have a mind, and it's hard to talk. I forget things when I'm talking to people. I don't remember everything, and then it comes to me later on. I have memory problems since the Gulf War.

Gerald Ross, M.D.: Some of the more exciting work that's appearing recently about the abnormalities that appear in the brain function of Gulf War syndrome patients has been done by a team of researchers headed up by Dr. Robert Haley based at the University of Texas Southwestern Medical Center in Dallas. What they have done is looked at the metabolism in the brains of the Gulf War veterans showing clearly that there is a neurotoxicity, that there is a brain damage in these people when compared to controls.

SFC Sherry McGahee: I lost teeth there, what do you say, eating the insides out of the teeth.

I get 100% disability from VA. I was only getting 60% from the Army. That takes me over a year to get that.

Narrator: One of the reasons it took Sherry McGahee so long to receive 100% disability was that Army doctors had misdiagnosed her case as "a fairly chronic depressive disorder associated with multiple physical complaints and a chronic pattern of social maladjustment."

The Army psychiatric reports on Sherry McGahee contain these phrases:

"As observed by others working in this soldier's case, the patient tends to present with multiple somatic complaints that are either unfounded given medical examination, or are significantly in excess of what might be expected given any positive results from medical examination."

"Patients with this type of response style tend to overreport their symptoms in an attempt to elicit assistance."

"She does have a history of satisfactory military service spanning more than 16 years, so she must have had the capacity to isolate her occupational functioning from her social difficulties in the past."

"There is some possibility that the longer she is allowed to be dysfunctional on the job, the more ingrained a patient identity will become.

Countless other ill veterans have been given psychiatric diagnoses. Unfortunately, in general only limited disability payments are available for psychiatric problems.

SSG Bob Jones
U.S. Army (Retired)

My symptoms began in the Gulf with severe abdominal cramping and severe diarrhea that was accompanied with severe headaches and bouts of dizziness and tingling, and once I returned back to Germany, the headaches continued, and I went through periods of night sweats. And I also began to notice my joints were stiff. My knees would swell after running. It was harder for me to do things without feeling shortness of breath.

I spent eight years in the 82nd Airborne Division as a paratrooper. I was in excellent physical condition, and I also participated in many athletic activities. I represented 7th Corps in the Army tennis championships when I was in Europe, and now I have great difficulty walking around the block without just, or walking up a flight or two of stairs, without being totally wiped out and in pain.

Narrator: Toxicologist Dr. Gunnar Heuser, M.D., Ph.D., has lectured on chemical injury and chemical sensitivity to professional meetings worldwide.

Gunnar Heuser, M.D., Ph.D.: I see patients who have a history of chemical injury, and I have seen patients more recently who were involved in the Gulf War and now developed the Gulf War syndrome. And one statement I can make is that the patients who come to me with Gulf War syndrome have exactly the same complaints as the patients I see from chemical injury. So one statement I can make is that all their symptoms can be explained on the basis of chemical exposure alone. Now I'm very much aware of the fact that there was more than chemical exposure in the Gulf War. There were infections, there were vaccinations, there was all kinds of warfare, there was radioactivity, and these are all controversial issues. But my point is that a patient with Gulf War syndrome has exactly the same complaints as patients of mine who have never been to the Gulf War but have had chemical exposure.

SSG Bob Jones: As a paratrooper, I had extensive exposure to jet fuel and jet fumes, and it never bothered me. And after coming back from the Gulf War and having been in the oil fields for that length of time, breathing in the noxious fumes on a daily basis, now just the smell of diesel fuel makes me severely nauseated, dizzy, and very sick. Perfumes, I don't wear any type of cologne because it makes me nauseous.

And things just got to the point, where, you know, I had diarrhea on myself at work a couple of times, and I said, "Enough is enough. I need to get help." It's real embarrassing to be standing around all your men and all of a sudden, you can't even make it to the bathroom on time.

My most recent findings from the Army physical evaluation board are that I have "undifferentiated somatoform disorder," which is the biggest insult that I can even begin to imagine.

Christine Oliver, M.D.: There are those who believe that MCS is psychogenic, that is, that it is all in the mind. Based on my experience over the past more than twenty years taking care of patients with MCS at the Massachusetts General Hospital, I have no doubt that MCS is a physical and a physiologic disease. There are often visible manifestations of disease in patients who come into my office. These include, for example, flushing of the face, swollen mucous membranes of the nose that are directly associated with exposures, in some cases increased heart rate, in some cases increased blood pressure. When these individuals are not exposed to chemicals, their skin is normal, their blood pressure is normal, and their heart rate is normal. Unfortunately, there is no laboratory test that has an MCS sign on it. You can't take a chest x-ray and diagnose MCS. You can't draw a complete blood count and diagnose MCS, and that's one of the difficulties. Hopefully, with research and improved understanding one day we will be able to do that, but presently it is not possible.

Primary Toxic Exposures During the Gulf War

Narrator: During the Gulf War, coalition forces bombed 28 of Saddam Hussein's chemical weapons factories and storage depots, releasing deadly nerve agents like sarin and mustard gas that drifted south over our soldiers.

When the U.S. forces blew up the vast munitions bunkers at Khamisyah after the war, large quantities of sarin nerve agent were released and drifted over at least a hundred thousand U.S. troops.

In the early days of the war, at least 250,000 U.S. soldiers were required to take pyridostigmine bromide pills, PB pills, three times a day as a protection against possible enemy use of soman nerve agent. The PB pills were themselves quite toxic because PB is a carbamate pesticide. The possibility that PB pills may have induced chemical sensitivity in soldiers is raised in a report commissioned by the Department of Defense from the RAND Corporation, a major think tank. The first section of Chapter 11 is titled, "Does PB lead to MCS?"

Another major toxic exposure during the Gulf War occurred when the Iraqis lit over 600 oil well fires as they retreated from Kuwait.

Jim Tuite
Former Senate Investigator.

Many of the soldiers reported that they were coughing up oil and tar and sweating an oil-like substance for months after they returned from the Gulf as the result of their exposures to these fires.

SFC Sherry McGahee: We had 60 oil wells burning where I was. People that had never had asthma before had asthma during Kuwait.

SSG Bob Jones: We saw no sunlight for almost 45 days. The sun was completely blackened out by this thick film of smoke and soot.

COL Herbert Smith: When you spit, it looked like oil. If you blew your nose, it looked like axle grease. It was 17 days before we had enough water that any of us could take a shower. We took the shower, in a tent, of course, closed in. We got clean until we opened the tent door, put on our dirty, oil-soaked clothing because we did not have enough water for laundry.

Narrator: With each passing year, more sick veterans are becoming aware that chemicals are triggering their symptoms. Even ALS victims Randy Hébert and Michael Donnelly have chemical sensitivities, as do all the other veterans we interviewed.

SSG Anne Selby
British Veteran

I have problems breathing in atmospheres where there's heavy perfume concentrates.

SFC Sherry McGahee: Gasoline - that makes me sick at my stomach.

Narrator: Terry's extreme sensitivity to chemicals makes him especially vulnerable to perfume inserts in magazines.

SFC Terry Dillhyon
USANG (Retired)

I hate it. Somewhere in a magazine you'll be reading and they'll have a perfume advertisement. And when you open that page, it releases that perfume. I had it hit me one time. I was just going through the magazine, I opened it up, and this was apparently a pretty potent perfume that put me immediately into an asthma attack. And I had only just been diagnosed with asthma since I had come back from over there.

The asthma attack I had increased during the night. I used my inhalers and went to bed anyway. Then my breathing got extremely bad. They sent a rescue unit to get me. And in the rescue unit, I stopped breathing three times. They took me straight back into the emergency room, continued giving me treatments. About the time they thought I would be all right, I quit breathing again. And it took a couple of days to get me back to breathing like I was supposed to, and all because of a dad-burned little advertisement for a perfume that cost me a couple of days in the hospital.

I had a $580 rescue bill. I had over $2,000 emergency room bill, and approximately $3,000 hospital bill. I'm not getting any assistance. I have no Medicare because I haven't been approved yet, and I'm not getting anything from the government. I had to pay these bills myself.

I have a discharge paper from Washington, D.C., that says I have possible multiple chemical sensitivity. I was going down, I was applying for Medicare, and they send you, Social Security people, send you to their doctors. Casual conversation with the doctor before he started his examination, I mentioned multiple chemical sensitivity. The doctor went crazy, really flew off on me. He said, "I'm going to tell you right now, sir, you just lost all your credibility with me. There's no such thing as that." And sure enough, I got turned down. I don't know what kind of a report he wrote.

Gerald Ross, M.D.: Regarding the issue of chemical sensitivity and its lack of acceptance in the past, we would be so much further ahead if there had not been this resistance in the minds of the medical and scientific community to looking at the possibility of the reality of this condition, and we would be in a better position to be able to help these Gulf War veterans, I believe.

PET: Positron Emission Tomography

Gunnar Heuser, M.D., Ph.D.: Now we can also do what is called a PET scan. And the PET scan is a scan where you are given, or the patient is given, radioactive sugar, glucose, and the glucose is needed by the brain to function. In other words, every part of the brain functions only because it uses glucose. So if you have radioactivity going to all over the brain as it is activated, then that's normal. But if you find that certain parts of the brain don't get the glucose, that implies that that part of the brain doesn't function well. And I brought some scans to show how a PET scan can look three dimensionally, and where there are what I call holes, you can see in the three dimensional. And these holes are not real holes; they are functional holes, meaning where you see these holes, that's where the brain doesn't function properly. And the examples I brought are patients where the MRI was normal, meaning that there is really no hole. They have all the cells; it's just that the cells don't function properly. And so with these scans, the SPECT and the PET, we can look at blood flow, which is often decreased; therefore oxygen delivery to that part of the brain is decreased, and two, we can show that metabolism of the brain is decreased in certain areas.

Senator Kay Bailey Hutchison: We know that the people who went to serve our country were exposed to a host of pharmaceuticals, chemicals, and environmental toxins. You might ask the question, "Well, why do we need to know the cause? Of the 700,000 who served in Desert Storm who were affected in some way, why don't we just treat them? Why do we have to go forward and find the cause?" We have to go forward and find the cause so that we won't have another hundred thousand next time.

John Sferazo: And to this day, I can still hear the squealing of the iron. I can hear the rumbling of the first tower coming down. So being an ironworker and being a person in the construction field, where every day you face some type of hazard, some type of danger. Well, right after we witnessed that collapse, we knew that we wanted to go into the Trade Center site.

John Sferazo
Ironworker

John Sferazo: I was there something between 29 to 32 days. And my first four days, sometimes we were there around the clock. We weren't getting paid. We were there as volunteers, utilizing our capacity as iron workers to cut up debris such as the enormous iron beams and columns, all the massive structures that were still there.

Congresswoman Carolyn Maloney: We remember the signs all across the city "iron workers, come quickly, come to the site. We need you." The ironworkers rushed down to help work the iron to find the people, and now many of them are sick.

Congressman Nadler: Obviously, 9/11 was a tremendous health disaster, and in my opinion the response of government on all levels - federal, state, and local government - was not only inadequate, it was dishonest and wrong and is largely responsible for many, many people getting sick and many people who will get sick that we haven't seen yet.

Bonnie Giebfried
EMT

Bonnie Giebfried: We were one of the first units into the South Tower. We got three individuals out of the South Tower. The last thing I remember seeing actually was a helicopter trying to go on one of the towers to get people off the tower, and just briefly remember hearing it, someone say it was going to blow and at that point, you had a humongous fire ball; it looked like a meteor coming at us.

Narrator: Bonnie had never had asthma before 9/11, but by the time the day was over, she had had three bad asthma attacks.

Bonnie Giebfried: Finally got treatment because my chest was killing me; I was having a second asthma attack. And just the feeling of, people just don't understand not being able to catch your breath, not being able to fill your lungs. It's such a horrible, horrible feeling. It feels like someone's crushing your chest, sucking everything out of you.

Hugh Kaufman: I was one of the people who started the Agency over 35 years ago, and I started our program for toxic waste, solid waste, and emergency response. For the last 35 years, on and off, I've been the chief investigator on hazardous sites for EPA. When I was the chief investigator for the EPA ombudsman's office, I investigated the environmental and public health issues related to the World Trade Center attack. We held two public hearings that lasted almost twelve hours each in February and then in March of 2002 as part of our investigation. We had testimony from the public, we had testimony from leading scientists from all over the country, and we found that the area was a public health and environmental catastrophe.

John Sferazo: Since 9/11, the smell of gasoline and diesel fuel is such that I don't get out and even fuel my own vehicles. I don't even want it on my hands because of the odor. Being around the job sites and being around the smell of the diesel and gasoline, I am so symptomatic to that involvement that I was constantly getting problems with my throat, I would wind up going hoarse, and I would lose my voice, sometimes the next thing you know from a sore throat, I'd have a chest infection, I'd get lung infections, then I'd get pneumonia, and this never ever happened to me before in my life. Now the smell of smoke actually sickens me, sometimes giving me a headache. I know I can't use any type of cologne or aftershave. I can't take that smell, it's sort of like a burning inside my nostrils. I'm very acute, or I have an acute response.

Bonnie Giebfried: I can't be in restaurants because God forbid someone has perfume on. I can go into a fit. I can feel nauseous and throw up. My throat can close up. The multiple chemical sensitivity issues that have come from 9/11 have not been addressed. Household cleaners, Oh, my God, you just might just as well pack me up at that point and just send me to the hospital.

Joel Kupferman: I've been tracking the firefighters post-9/11, and what many, many have told me and that medical reports have showed that they become hypersensitive to other chemicals that are out there. They could be fine for a while, they have, you know, respiratory problems. They're on 3/4 time, meaning that they're not on active duty, and boom, they'll come across perfume or other chemicals out there, even household cleaning chemicals, and they'll just become immobilized, and some of them just become so sick that they can't, they basically can't function on a daily level.

Hugh Kaufman: One of the things that we uncovered at EPA doing investigations of releases of hazardous material is large numbers of people where there are releases start to develop what we call chemical sensitivity so we're seeing health effects to the public around hazardous sites like the World Trade Center a year, two years, three years down the line, where people are now sensitive to chemicals. A little bit of perfume, for example, which would not affect anybody, can make people deathly ill.

Stephen Levin, M.D., Director, Mount Sinai
Occupational and Environmental Clinic

Stephen Levin: Another striking thing is that many of our patients are much more reactive to strong odors than they were before, not always with exactly the same reaction that they'll experience when they are exposed to cigarette smoke or bus exhaust, but they notice these odors more and find themselves reacting physically unpleasantly to these odors in ways they never did before. I have patients who cannot walk into a department store cosmetic area without experiencing shortness of breath and chest tightness in ways they never did before. I have patients who cannot get on an elevator where someone is wearing strong perfume or cologne without experiencing fairly intense respiratory reactions. We don't always understand why this is so, but it is extremely commonly reported among our World Trade Center responders and many of our patients say that they are simply unable to wear fragrances themselves or be around other family members, friends, who wear such fragrances because they simply can't tolerate them.

Bonnie Giebfried: It's torture. You know, some days you wish you'd died that day because living - I don't call this living. Part of me died 9/11. I will never get that back, and I've been existing day in, day out.

Congressman Christopher Shays: My God, we failed to protect these workers to start with, but having failed to protect them, spending money to monitor them, to spend no money to heal them, to make them better, to extend their life. Have them treated as if it's their fault. So nothing very good that I can say about how we've handled this issue.

John Sferazo: We become different people. A lot of us, we explain it sometimes as if you were dead it would have been a final saving grace in some respect but being left alive and symptomatic from what you experienced leaves you a hollow shell of an individual and you feel that way because it's not the same you.

Alison Johnson: People with multiple chemical sensitivity serve as the canaries in the mine that alert all of us to the dangers of exposure to toxic chemicals in our daily lives. Efforts to accommodate these people may well help improve the health of all of us and help reduce rapidly escalating health costs that our society faces.

Christine Oliver, M.D.: The onset of MCS is often in association with a relatively high level of chemical exposure. It can occur, however, with a lower-level of chemical exposure. I've seen a number of patients whose disease began during the course of their work in a building or office with inadequate ventilation, with poor indoor air quality.

Alison Johnson: Before she developed MCS at age 32, Jenn had a lot going for her in life. She had excellent and creative jobs, and she enjoyed activities like dance, yoga, and African drumming. In my work as chair of the Chemical Sensitivity Foundation, I have spoken with many chemically sensitive people during the last three decades, but Jenn is definitely the worst case of MCS I have encountered. She stands as an extreme example of the neurological effects that chemical exposure can induce in certain individuals.

Jenn Duncan: I had developed chemical sensitivity prior to 9/11. The office building where I worked was doing renovations and after a prolonged exposure over several weeks in a poorly ventilated area to a number of those chemicals I had a number of strange symptoms and unusual things that were going on that then later on I realized developed into multiple chemical sensitivity and other chemical injury symptoms. After 9/11, with all the exposure of the smoke and the fumes blowing over from Manhattan into Brooklyn, I definitely experienced exacerbations and got even more debilitated. And, you know, being exposed just to cologne, or if I was out around traffic, or somebody smoking a cigarette, then it would make me disintegrate and have the disorientation, and the trouble breathing and the great pain, joint pain.

Spelling is hard; numbers are hard. I have dyslexia sometimes now. I always check and double check. I would write an envelope, and it would be returned because I mixed up my numbers. I never had a problem with numbers before. I did calculus and differential equations. If somebody asks me numbers or to spell something, it's really hard. Sometimes it helps me, I used a little sign language before, so I usually spell out just to help me get something physical to help me get the numbers or letters out. Sorry, I'm getting fatigued, so I'm trying to just ride the waves and hold my energy together.

Alison Johnson: Believe it or not, that was Jenn on one of her good days. We had also filmed her the day after a doctor's appointment. Jenn told us that exposure to several air fresheners and diesel fumes in the private ambulance that transported her had caused this temporary but sharp decline in her condition.

Christine Oliver, M.D.: In June of 2009, the CDC put on its internal website an indoor air environmental quality policy intended to maintain good indoor air quality in buildings in which its employees work. Among other things, the CDC policy states:

Scented or fragranced products are prohibited at all times in all interior space owned, rented, or leased by the CDC. This includes the use of the following products:

• Incense, candles, or reed diffusers
• Fragrance-emitting devices of any kind
• Wall-mounted devices, similar to fragrance-emitting devices, that operate automatically or by pushing a button to dispense deodorizers or disinfectants
• Potpourri
• Plug-in or spray air fresheners
• Urinal or toilet blocks
• Other fragranced deodorizer-re-odorizer products

In addition, the CDC encourages employees to be as fragrance-free as possible when they arrive in the workplace. Fragrance is not appropriate for a professional work environment, and the use of some products with fragrance may be detrimental to the health of workers with the following: chemical sensitivities, allergies, asthma, and chronic headaches/migraines.

Alison Johnson: It is important to note that the EPA website lists air fresheners as a source of indoor air pollution.

Narrator: Professor Anne Steinemann, a civil engineer who has taught at both Georgia Tech and the University of Washington, has analyzed the secret ingredients in several leading fragranced products like air fresheners and laundry products. Dr. Steinemann found significant numbers of toxic chemicals in these products. Dr. Steinemann's website, www.drsteinemann.com, contains extensive information about her studies.

Christine Oliver, M.D.: The CDC Indoor air policy is a very important policy and provides an example of what we should be doing in every workplace in the country. I think all workplaces should be fragrance-free. The number of people with diagnosed MCS and/or chemical sensitivity is increasing on a daily basis.

Alison Johnson: In the last couple of decades, I have seen a rapid acceleration in the number of people reporting that they have developed chemical sensitivity. In 2009 Professors Stanley Caress and Anne Steinemann published in The Journal of Environmental Health the results of a national prevalence study for multiple chemical sensitivity that they had conducted. In their national phone survey, 3.2 percent of the respondents said that they had been medically diagnosed with MCS. This result suggests that over ten million Americans are suffering from multiple chemical sensitivity. That's a number larger than the population of the state of Michigan in 2010.

Christine Oliver, M.D.: A fragrance–free policy allows these individuals who are chemically sensitive to continue their employment. As a result, they do not have to turn to Social Security Disability for income. Those who are not the beneficiaries of a fragrance-free policy are often unable to work and do find themselves on Social Security Disability.

William Meggs, M.D., Ph.D.: We want to keep these people in the workforce; we don't want these people on public assistance, and it's vitally important that we make our workplaces free of chemical pollutants.

Christine Oliver, M.D.: Patients with MCS and physicians who may be treating them need to remember that if it's too good to be true, it probably is too good to be true. There are no miraculous cures out there, at least none that I know about. Patients with MCS travel great distances sometimes to receive what is touted as a miracle cure. They spend lots of money to receive this so-called miracle cure, and in the end it is not a miracle cure. It often makes symptoms worse rather than better, and at the end of the day it does not cure the disease. Until we better understand the pathophysiologic mechanisms, we are not going to be able to do much better than avoidance of exposures in my opinion. And to better understand the pathophysiologic mechanisms, we need funded research in this area.

Narrator: In our headlong pursuit of better living through chemistry, we may be creating problems that have no clear solution. It is essential that research be undertaken to unravel the causes of multiple chemical sensitivity and seek ways to alleviate or reverse the condition.

William Meggs, M.D., Ph.D.: Funding for research in chemical sensitivity in this country does not measure up to the size of the health problem, the public health problem that it is. Japan does a much better job than we do in studying this problem and making funds available for serious researchers. I believe that the reason we haven't seen more research funding is political rather than scientific. There are commercial interests, the manufacturers of consumer products that pollute the air we breathe and the Worker's Comp insurance companies and others that perceive that if we knew more about this problem they would be liable for people's suffering, and frankly, they don't want it studied.

Alison Johnson: Visitors to the website of the Chemical Sensitivity Foundation, which I chair, can view a bibliography of research articles on chemical sensitivity that have been published in peer-reviewed journals. The entire 13-page CDC policy on Indoor Environmental Quality is also available on that website. I urge those of you who are skeptical about the reality of multiple chemical sensitivity to look at these sources. Disbelief among many physicians has had the consequence of causing many desperate patients to seek help from alternative medicine providers who run the gamut from reputable practitioners to those offering "miracle cures." As I note in Chapter Three of my book Amputated Lives, suicide is too frequently an outcome for chemically sensitive patients who cannot find a place to work or live that does not make them sick and who all too often face a discouraging disbelief from the medical community and their family and friends.

In closing, I have a special request for those of you who are fortunate enough not to have developed multiple chemical sensitivity. Your efforts to treat those with MCS with kindness and compassion instead of skepticism will do much to make their difficult lives more tolerable.

The End

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