February 14, 1999 -- Have a Heart for MCS!
To: Dr. Dean Edell askdrdean@healthcentral.com
Fr: Barbara Wilkie (Barb's email is no longer valid, please contact EHN)
Subject: Rebuttal to Dr. Dean Edell's "Chemical Sensitivity: Real Or Imaginary?"

From Dr. Dean's page http://www.healthcentral. com/drdean/deanfulltexttopics.cfm?ID=9018 --

"Yan: I have a friend who came down with some kind chemical sensitivity a couple of years ago. Is this kind of thing imagined or real?"

"Dr. Dean: I think it is not real. There are people who think they are sensitive and that their symptoms are due to micro amounts of various chemicals. It is an easy thing to study, and we have studied it upside down and backwards. ...

"There is a lot of literature that supports what I'm telling you about this."

Barb: That's right. There has been a lot of literature that supports what you are saying -- and it's written by the industry and its flacks. There are "research institutes" that are industry sponsored and they turn out untold numbers of reports. There are doctors who represent the chemical industry or the insurance industry, who quickly dismiss chemical sensitivity as being "all in your head." And, there is a document that has had untold evil influence upon the lives of millions. It is the 1990 "call to arms" by the Chemical Manufacturers Association: Environmental Illness Briefing Paper (http://ehnca.org/www/books/cmaeibri.htm). In summation, they wrote:

Forming Coalition

Because it has the potential to impact many segments of society, many groups have an interest in placing environmental illness in its proper perspective. Among them:

• medical associations;
• manufacturers and applicators of agricultural and pesticide products;
• Personnel, labor relations, etc.;
• food dealers;
• restaurants;
• insurance companies;
• self-insurers;
• soap and detergent manufacturers;
• chambers of commerce;
• lawncare services;
• homebuilders;
• aerospace industry;
• retailers; and
• automobile manufacturers.

Because environmental illness is a health issue, the only people who can legitimize it are physicians, and they have not. Should environmental illness arise as an issue, a coalition with the state medical association is absolutely necessary. [Emphasis added.]

Mainstream physicians have not learned about environmental issues in school. Furthermore, many keep up with times by reading the "poop sheets" from the chemical industry. Certainly the goal is to push more drugs, more chemicals.

Make no mistake about it, Chemical Sensitivity or Multiple Chemical Sensitivity (MCS) is real. It has indeed been studied "upside down and backwards," proving there is excellent reason that millions of Americans -- and millions more worldwide! -- suffer from chemical sensitivity. Chemicals have target organs and they are known to cause certain reactions when inhaled and/or absorbed through the skin. It is time for doctors to read and report the well-researched data on the adverse effects of chemical fragrance products and pesticides unwittingly welcomed into our daily lives. These adverse effects debilitate and disable users and non-users alike. Some of us die. Anaphylactic shock is not to be lightly dismissed.

Let's look at some history

In 1986, the National Academy of Sciences targeted fragrances as one of the six categories of chemicals that should be given high priority for neurotoxicity testing. The report also states that 95 percent of the chemicals used in fragrances are synthetic compounds derived from petroleum, including benzene derivatives, aldehydes and other known toxics and sensitizers capable of causing cancer, birth defects, central nervous system disorders and allergic reactions. (Report by the Committee on Science and Technology, U.S. House of Representatives, Sept. 16, 1986; Report 99-827).

In 1991, the EPA published its report: "Identification of Polar Volatile Organic Compounds in Consumer Products and Common Microenvironments," Lance Wallace, U.S. EPA, Warrenton VA; William C. Nelson, US EPA, Research Triangle Park, NC; Edo Pellizzari, James H. Raymer, Kent W. Thomas, Research Triangle Institute, Research Triangle Park, NC; March 1991. Paper #A312 to be submitted for presentation at the 1991 Annual Meeting of the AWMA. (EPA/600/D-91/074) http://stores.us.ohio-state.edu/~steen/allergy/EPA_A312.html.

It was upon this work that Julia Kendall (1935 - 1997) -- http://ehnca.org/www/ehnhompg/kendall.htm -- based her work, compiling the chemicals listed and comparing them with Material Safety Data Sheets (MSDS) to produce her flyer, "Twenty Most Common Chemicals Found in Thirty-One Fragrance Products." Through Julia's efforts people around the world had their first glimmer of hope that there was indeed a reason for their chemical sensitivity and that the chemical fragrance products had a lot to do with their ills. Just as they knew, and despite what they heard from their mainstream medical doctors.

Tell me, would you begin to feel the least bit embarrassed if in a few years, you who stultify us, who claim we are malingerers, who claim MCS is not real . . . would you be the least bit embarrassed when it is proved beyond any dodging by the chemical industry that it is as real as Multiple Sclerosis? (MS, by the way was called the Faker's Disease in the early 1900s.) Are you aware that they have recently announced that Parkinson's is seldom genetic, that the environment is the main cause for people who suffer it after age 50? Do you know that cancers are also seldom genetic and some see cancer as the ultimate case of chemical sensitivity?

An Ounce of Prevention

In my case, I firmly believe that my MCS could have been prevented, had my employer, during the 1980s, asked people to work fragrance free, or if scents were deemed a "necessity," to wear only light scents, LIGHTLY applied when dressing for work. And, as fragrance-free products became readily available, they could have asked staff to use those when dressing for work. Furthermore, they could have suggested, by way of a message on all meeting notices, that all guests attend meetings fragrance-free -- other employers made that request.

I also believe that my health, and that of my colleagues, could have been spared had my employer switched to Integrated Pest Management (IPM) practices, instead of continuing to use a monthly pesticide application service. Pesticides were often sprayed while the employees were working (I was able to keep them from coming into my office, but I was certainly in the building when the spraying would commence. And, lest I get too cocky about having successfully brought an end to that harmful practice of spraying while staff was working, it again has happened to my former colleagues just this month [February 1999], despite their requests to the contrary.)

The health of employees -- rather than just the budget -- should be given top consideration. Ultimately, the employer will be salvaging his budget in less sick time and more productive work! Employers should use fragrance-free cleaning products, as well as paints, adhesives, carpets, etc. with low-emitting volatile organic compounds (VOCs). Also they should schedule major chemical-outgassing work after core hours and then ventilate the building as thoroughly as possible. Additionally they should post warning signs alerting people of still-outgassing projects, such as freshly painted rooms, or newly waxed floors. And should employers find it is absolutely necessary to use pesticides, staff should be alerted by signage what kind of pesticide was used and where and when it was sprayed.

The modern employer, especially one in sealed buildings, must look upon protecting the health of the staff and visitors as part of its cost of doing business in this chemical-laden age. The employer can establish policies with a mind to indoor air quality and to access for all -- including the chemically sensitive person. The Americans With Disabilities Act (ADA) gives us the right to breathe. It IS an access issue! But first, it is an illness and injury prevention issue.

Is chemical sensitivity real or imaginary?

I have often looked upon MCS as meaning not only Multiple Chemical Sensitivity, but also as Multiple Chronic Symptoms. MCS, however defined, is real. Too many well-respected doctors and researchers have proved that, with data and tests. And too many good people have been put to the test of daily living with MCS! There is no one I know, including myself, who would say:

• Asthma? Oh, yes, give me some of that!! I just love to feel as though a big truck plowed into my chest and decided to park there, while my lungs go into painful spasm and I begin deep, heavy coughing, so I sound like one of the seals on San Francisco's PIER 39 (http://www.pier39.com/views/index_SeaLions.html).

  The interesting thing about my type of asthma, by the way, is that for most of my life, mainstream medical doctors could not make a diagnosis because I never wheezed. It was only in relatively recent times that I was diagnosed as an asthmatic. My condition has not varied since age five, when a chemical pall settled over south St. Louis, Missouri, making people ill with at least severe bronchitis. (To this day, I've yet to learn if it was DDT -- the state of the art mosquito abatement program of the 1940s -- or, if there was a problem with a nearby refinery, located upriver, in Illinois, as my mother used to claim. Or, perhaps a combination of the two "events.")

  I have lived 55+ years with what was heretofore undiagnosed "chemical-induced asthma." Early on I developed coping skills, which have served me well through life. I had three children by natural childbirth and nursed my babies. I kept drugs and chemicals to a minimum. I was doing OK until my asthma grew steadily worse during the 1980s with the advent of heavy-scented, heavily-applied fragrance products encouraged to be worn in a "sexual harassment-free workplace." After years of daily-NOT-so-low-level-exposures to heavy-scented fragrance products, I tripped over into MCS in April 1991 when exposed to an individual who must have bathed in an entire bottle of a well-known synthetic musk-type scent. I didn't learn what I had until March 1992.

• Migraines? Indeed, indeed! Yes, I simply must work through migraines. I'm a real glutton for punishment. If I take my accrued hours of sick leave -- I never used to be sick at all! -- my time sheet will be held and I'll receive a wonderful lecture from the human resources manager on using too much sick leave . Mind you, this despite the fact that it was a management decision to railroad me to a toxic office two floors away from fragrance-wearing guests and staff, including management, which in turn includes the very manager who'd come into my office of ostracism to lecture me about using sick leave, while wearing her "Only a little bit of . . ."). The room of isolation is also in the area of a conference room much used by fragrant visitors ... and it is also right off the main lobby, which serves the public-use auditorium and a public-use cafeteria. Harassment is not spelled "sexualharassment!"

  Interestingly, depending on the type of fragrance I encountered, I'd suffer mainly two very different types of headaches. One felt as though the wearer had just hit me smack in the forehead with a sledgehammer; that headache never became a migraine. It was just painful and it often was a precursor to sinusitis. My other most frequent type of headache felt as though I was receiving repeated whacks to the top of my head with burning hot meat cleavers and that's the type that would become a searing pain -- most often behind my left eye. That became my migraine. The first time that reaction happened to the right side of my brain, really worried me . . . what's more, no one could explain why on that particular occasion the right side of my brain was adversely affected instead of my left.

• Sinusitis? Oh, yes! I just love that throbbing pain, along with the upper eyelids that get so puffy it's hard to see out from under them and the feeling that the roots of my teeth become quite painful. And what a shade of green! Gotta get me some of that! (Thank heavens I've learned about the benefits of acupuncture and Chinese herbs. My latest sinus reaction had a speedy departure thanks to the effects of the needles -- the improvement to my eyelids took place right before my acupuncturist's eyes, while I suddenly was able to breathe through my nostrils!)

• Laryngitis? Definitely! I loved having my voice go in the midst of an important business call just because perfume wafted unbidden into my room ... and my entire respiratory system. Do you have any idea how often people suggest I breathe through my nose? I do so anyway. They have not a clue that the voice box is part of the respiratory system. Breathe chemicals in through the nose, and they go right past the larynx on their way to the lungs. Of course, the chemicals can also journey directly to the brain while making their way through the respiratory system. Those chemicals are fun things, all right. And besides laryngitis, I'd wind up with a mighty sore throat! A real bonus!

• Lymph node swelling? Oh, that is a good one, for it has multiple benefits as it drives the doctors nuts while I get to have the pain associated with the swollen nodes. I'll definitely have some of that!

• Incontinence? Now there's a fun one! CanNOT pass that up!! I'll definitely have some of that. And the very interesting thing is, I can always be surprised! Incontinence is really a "two-fer" packaged deal. Another person's toxic-petrochemicals-sold-as-benign-products could make me lose control of my bladder. Or, perhaps I'll be really lucky and it will be my bowel that goes into spasm with my system turning to water. In either case I'll be adding to my day as I'll get to play the game, Will I make it to a john in time? (Have you ever wondered why so many adults need diapers? And to make it a real circular event, they perfume the diapers!)

• Muscle pain and joint ache? Ah Ha! That's one that is really great. For the most part, I can still move about. Only I know the pain I feel and only I can really appreciate being able to move despite that pain. That's how it is. Very subjective. But every now and then, I get to add to that pain as my brain also malfunctions and I stagger and stumble. Sometimes I'm lucky enough to fall down and get scraped and bruised, and throw my spine or pelvis out of whack, adding to my pain -- and changing my "hidden disability" into one that's a tad more obvious as my gait is altered. Other times I've really hit the jackpot!

  That's when I simply black out and my last known thought was not one of stumbling, but rather one of the pavement "coming up" to hit me squarely. That's what used to happen to me -- walking alone or with someone, in animated conversation. One second I'm walking and the next . . . BOOM!

  It took a long time to ferret out the answer to that one. But I've since learned that fabric softeners in the ambient air have been associated with those blackouts.Nor have I had the numbing from temple to jaw bone on the right side of my face that used to worry my doctors no end. (I refused invasive tests, knowing full well it was one of my chemical reactions, I just didn't know which trigger caused that particular problem.) I now use my respirator at even the tiniest hint of fabric softeners in the air and I've not blacked out since, nor have I ever again suffered that facial numbing. It was that very light whiff of fabric softeners that one takes for granted because that pollution source is so common. I used to ignore it, but finally learned that I shouldn't have. I always had sense enough to protect myself from the heavy stuff, invading my house from a neighbor's. Anecdotal? You betcha! True? Damn straight. (For more information on fabric softeners: http://ehnca.org/ehnfs.htm.)

• Skin eruptions? Rash? Hives? Flushing? Oh, I'll have some of those. For sure! I'll especially go for those instant eruptions that look like they could become boils and hurt about as much. That's a tremendous opportunity and not to be passed up -- I can look as ugly to others as I feel to myself. Such a blessing. I'll definitely have lots of them, and then afterwards I can bear the scars of my battle wounds -- my chemical injury, if you please. Oh yes, yes, yes!

  But then, since this is all in my mind, I may as well go for broke. Why stop at just getting the almost instantly-erupting "adult onset acne" when I could add to my repertoire? Hives are always fun and lots of people get them -- why should I be any different?

  Flushing is not to be ignored either. With that comes the feeling that millions of burning hot needles have been applied repeatedly. It hurts. It burns. It stings. And, I get to feel terribly hot! Such a deal!

  On one occasion, I saw another chemically-sensitive person coming toward me in the hall of my workplace -- she was a guest -- and she said: "Barbara, your face is all red!" As I was saying to her, "Sue, your face is all red!" The two of us exchanged our identical stories about our reactions and together we played Sherlock . . . "Did you recently encounter the Affirmative Action Officer?" "Oh yes!" "Well, there you go!"

  Two people. Two very different bodies and personalities, both chemically sensitive, neither are "malingerers." Both of us are known as extremely dedicated, hard-working individuals with rather keen senses of humor. Both of us had identical lasting reactions to the AAO's perfume. Neither of us were near the odorivector at the same moment. Anecdotal? Yes! True story? YES! A chemical-reaction pattern here? Most definitely.

• Brain fog? Now that's something wonderful to experience. I know the thoughts are there, I just can't quite "grab 'em" to bring them to the surface, and if I'm really fortunate when I try to speak, the words don't quite come out right. It's always fun to sound like a blithering fool. Actually, it's another two-fer ... foggy thoughts and aphasia.

  It was really tremendous when I was in job promotion interviews, which of course, I failed miserably. As a result of my experience in one of the interviews, I was informed that among other things, I did "not do well under stress" and therefore, was certainly no good for the position -- allowing them to wonder why they even had me on board at all. Following the other interview about 13 years later, I was told by the personnell officer that he simply did not know why I "fell apart" in interviews, he knew I was extremely capable.

  After a few years, the first job was foisted upon me when there was a shift of responsibilities among management. I became responsible for supervising the system, which included cleaning up all the financial and maintenance problems created by the winner of the interview. Proving, at least to myself, that I was certainly capable of the work.

  At the time of the first interview, I didn't know that fragrances could have such devastating effects, nor why. I only knew I had a hard time breathing. I was not even aware of living with MCS, only of living with my chemical-induced asthma. During the second interview, even though I already was diagnosed "MCS," I was still learning a lot about it and only later realized that my problem was brain fog. But that's another book.

  Both interview panels were very fragrant. Both interviews were held in poorly ventilated, small conference rooms, one in a very old building, one in a new, sealed building. During both interviews, I developed laryngitis and tried mightily to stifle coughs and I knew I didn't "have a grip" -- I just didn't know why. I certainly was disinclined to readily accept their diagnosis of stress (this is an understatement of some magnitude!). I came to learn about brain fog on my own, through research and my flashbacks of awareness. Again, I had to become my own sherlock and had to become aware of patterns that most mainstream medical doctors refuse to acknowledge. Nonetheless, patterns are there!

  One more word on brain fog. I've been fortunate: I've never had anesthesia. At least not doctor-induced anesthesia. But friends who have, told me that brain fog induced by synthetic fragrances is much like coming out of anesthesia.

There's all that and more!

So often these reactions are brought on for the price of a bottle of petrochemicals -- paid for by others. Such a deal! And for that, we all get -- first- or second-hand, it doesn't matter -- petrochemicals used in untested combination to produce synthetic scents, made by an unregulated industry (see FDA's http://vm.cfsan.fda.gov/~dms/cos-206.html), further protected by outmoded trade secret laws ... and, Dr. Dean.

MCS is real because petrochemicals are real

A quick look at some MSDS (Material Safety Data Sheets) may tell you about target organs and reactions to expect. However, as MSDS are generated by the manufacturer, you may find that they simply don't know of any problems with inhalation, or eyes or ... Convenient! By the way, I learned about MSDS after I became ill and began my new life as a detective. How many think of MSDS sheets when using their favorite fragranced products? But they should. See the analyses of six scents as part of EHN's petition before the Food and Drug Administration http://ehnca.org/www/FDApetition/bkgrinfo.htm.

I also learned that reactions became worse upon the lowering of one's threshold (subsequent exposures). Make no mistake about it: MCS is real.

To borrow your phrase, Dr. Dean, "There is a lot of literature that supports what I'm telling you about this."

A final thought: Frankly, I'd far rather be labeled "too sensitive," than to be insensitive.

-- barb wilkie � Feb. 14, 1999; revised slightly, May 4, 2000

A thought: Medical Research

It seems to me, that if there were TRUE research, there would be patients as part of any study who lived most of their lives prescription and OTC drug-free, believing in alernative care or due to religious reasons, or because the live outside of town and their community has "never doctored," ... whatever. We are never considered for research, unless we suddenly decide we will take drugs and mammograms, etc. Personally, no thank you. I would have loved to have been a part of an HMO's breast cancer research project, but not if I had to submit to the medical procedures I don't believe in.

But the way medical studies are set up leaves me wondering just how valid is all of this medical research anyway? Seems to me data is automatically skewed to reflect the strictly medical/pharmaceutical industry's slant.

Why should I give a hang about medical research ... because we MCSers always hear how there is not enough resarch on MCS. Am I the least bit surprised? Hmmmmph. They don't use the data from the millions of unwilling comsumer product guinea pigs they now have.

Addendum, November 1999:

Despite the fact that I use a respirator -- and prescribed oxygen -- to avoid inhaling the seemingly ubiquitous chemical formulations of modern consumer products, there are times when I'm caught off-guard.

I still pay the price in compromised health for another's sense of beauty, or their clean or bug phobia.When given the opportunity to inhale another person's toxic chemical products called fragrances, cleaners, pesticides or paints, and yes, tar, diesel exhaust, ..., my body still exhibits its typical reactions for whichever chemical formulation it is that I've had to breathe. But, having retired has made a huge difference. My body is no longer inundated for better than a third of the day with superfluous toxic chemicals used by others ... strictly as a matter of their personal choice.

Throughout the years I was working, and even now that I've been "retired" for a year, my primary care doctor has been my chiropractor. While I was working, he kept me going -- prescription and over-the-counter drug-free. I would "beam-up" in his office when fragrance-induced symptoms such as asthma, migraines, sinus headaches, muscle pain and joint aches would take over my body. While it may be publicly viewed that a chiropractor cannot treat me for asthma, he could treat my body. And with his treatment, my asthma or migraines ... would be left in his office. He has kept me quite active despite my Myriad of Chronic Symptoms, which are very debilitating and often disabling.

During this past year I have also been under the care of two acupuncturists who are also Chinese herb specialists and Oriental Medical Doctors. I have made great gains in treating my -- fortunately benign -- tumor, which developed after I was ostracised to an evern more toxic office in my former workplace. (I met another woman who had the same type of tumor "pop up" following daily doses of diesel exhuast and other toxins. Of course, our exchanged info is of little interest to medical research ... although it should be!) As well as treating the tumor, both acupuncturists have been able to nip any sinus infection or bronchitis in the bud. Acupuncture has been a truly remarkable recovery tool for my body -- my OMD tells me that my body is quick to respond ... to the negative, yes, but also, thankfully, to the positive (acupuncture).

Following my experiences with acupuncture, I am no longer sick for a month or more as a result of an encounter with toxins people unwittingly welcome into their lives. To me, that makes every difference in the world.

I will be forever grateful for the skills and compassion of my three alternative care doctors who have worked so skillfully to keep me an active member of society ... as pain- and symptom-free as possible.

January 2000:

A new sonogram showed the tumor has not grown since October 1998. It bloomed in January 1998, was first mistakenly identified via sonogram as an ovarian mass. That scared the dickens out of me. It did! Nonetheless, I didn't want to rush into surgery and the CA 125 marker tests showed an extremely low count, so I put off surgery that summer. One of our daughters suggested acupuncture. I tried. Our OMD said he wanted to "shake things up in there" and the next day my sonogram (the third one, first following acupuncture) showed we were not dealing with an ovarian mass at all, but a common and benign pedunculated tumor off the uterus. No surgery. Yeah!!!

Next step, is to work with my tumor specialist acupuncturist to detox. With any luck -- and my adherence to the diet and detox program -- I hope to have the tumor leave my body. I also hope to be less reactive to all of those superfluous toxins in consumer products that are really messing with Mother Nature.

-- barb

Dean Edell, MD on the worldwide web--

Air Fresheners Really Air Polluters by Dr. Dean (7/1/98) http://www.healthcentral. com/DrDean/DeanFullTextTopics.cfm?ID=1192

Chemical Sensitivity: Real Or Imaginary? (1/27/99) http://www.healthcentral.com/drdean/deanfulltexttopics.cfm?ID=9018

Why Do You Call People With Chemical Sensitivity Hypochondriacs? http://www.healthcentral. com/DrDean/DeanFullTextTopics.cfm?ID=13371

Malathion: It's Back - To Treat Head Lice http://www.healthcentral.com/drdean/deanfulltexttopics.cfm?id=16515

• Carol Sterrit responds in The Coastal Post:
  http://www.coastalpost.com/00/1/03.htm