EHN [of California]
P.O. Box 1155
Larkspur, California, 94977-0074
Support and Information Line
By Barb Wilkie
The first iteration of this document was written as a February 14, 1999 e-mail message to Dr. Dean Edell. It then appeared in the Nov-Dec 1999 issue of EHN's The New Reactor. -- barb|
"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?"
Forming CoalitionThis is but one segment of that purely biased report, bought into by the media, mainstream medical doctors and their associations, employers, state and federal legislatures... We the people who are the early reactors -- and our environmental illness (EI) doctors -- have had to pay one hell of a price so a multibillion dollar industry could continue to grow out its economy without regulation and with impunity. Our lives are at stake as our doctor's licenses are being revoked. (Dr. Robert Sinaiko, San Francisco, is only one of many. An Orange County doctor is similarly undergoing the same sort of witch hunt -- covered last weekend by their local news. See http://ehnca.org/www/ehnhompg/stufhaps.htm#Actions against)
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.
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?
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.
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:
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.
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.
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.
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.
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
There is a lot of helpful access information available through EHN's site.
Specifically, see: ACCESS FOR PEOPLE WITH ENVIRONMENTAL ILLNESS/ MULTIPLE CHEMICAL SENSITIVITY AND OTHER RELATED CONDITIONS;
Sept. 30, 1996; Senate Subcommitte on the Rights of the Disabled; Senator Milton Marks, Chairman
The United States Access Board
Other items of interest are available through EHN's section,
Comments? (Barb's email is no longer valid, please contact EHN). Please put WWW in subject line. Thanks.
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The Environmental Health Network (EHN) [of California] is a 501 (c) (3) non profit agency and offers support and information for the chemically injured. HomePage is http://www.ehnca.org