Understanding &AccommodatingPeople with MultipleChemical Sensitivity inIndependent LivingBy Pamela Reed Gibson, Ph.D.James Madison University
2002 ILRU2323 S. Shepherd, Suite 1000Houston, Texas 77019713-520-0232 (V)713-520-5136 (TTY)713-520-5785 (Fax)[email protected] NET Director:Richard PettyDesign:Kaye BenekeILRU Publications Team:Carri George, Dawn Heinsohn and Rose ShepardSubstantial support for development of this publication was provided by the Rehabilitation ServicesAdministration, U.S. Department of Education. No official endorsement of the Department of Educationshould be inferred.The IL NET is a collaborative project of Independent Living Research Utilization (ILRU) and theNational Council on Independent Living (NCIL), with funding from the Rehabilitation ServicesAdministration.ILRU is a program of The Institute for Rehabilitation and Research (TIRR), a nationally recognized,freestanding medical rehabilitation facility for persons with physical and cognitive disabilities. TIRR ispart of TIRR Systems, which is a not-for-profit corporation dedicated to providing a continuum ofservices to individuals with disabilities.This guide may be reproduced for noncommercial use without prior permission if the author andILRU are cited.
Table of ContentsUnderstanding and Accommodating People with Multiple ChemicalSensitivity in Independent LivingAN INTRODUCTION TO MCS AND ES . 2Description . 2Causes/Hypotheses About How MCS Develops . 3Prevalence . 5Cultural Response . 5How to Help. 6THE HEALTH CARE CHALLENGE IN MCS . 7How to Help. 9THE EMPLOYMENT CHALLENGE IN MCS. 11Holding Onto Employment for Those with MCS . 11Getting Compensation for MCS . 13HOW TO HELP .15THE HOUSING CHALLENGE IN MCS .16Current Housing Conditions for Those with MCS .16How Does One Create A Safe Living Space? .18How to Help. 19ACCESS TO PEOPLE AND PLACES . 21Access to People . 21Access to Places . 22How to Help. 23IDENTITY, SELF, AND PSYCHOLOGY IN MCS .24Psychological Consequences of MCS .24Self and Identity in MCS . 26How to Help. 26CONCLUSION . 28ABOUT THE AUTHOR . 29
Accommodating People with MCSPage 1AcknowledgementsI want to thank the IL NET partners, ILRU and NCIL, for their support and their commitment tothis project. I am encouraged by the apparent growing interest in the IL field in being inclusive of personswith all types of disabilities. I hope this booklet will be of service to both centers for independent livingand consumer alike. I also want to thank Ann McCampbell, M.D. and Darrell Jones for their detailededitorial assistance and suggestions.And thanks to Susan Molloy, M.A. for helpful feedback on selected chapters and input aboutElectrical Sensitivity.
Accommodating People with MCSPage 2CHAPTER 1AN INTRODUCTION TO MCS AND ESDescriptionIn multiple chemical sensitivity (MCS) a person develops markedly negative reactions to everydaychemical exposures. These include exposures to pesticides in buildings, in gardens, on our food, and onpets; chemical cleaners; petrochemical heating systems; paints; perfumes; industrial emissions; and amyriad of others. We have been conditioned to think of these exposures as being “normal” andinconsequential, but for a growing portion of the population they are not. The condition of MCSdevelops in two stages – induction and triggering. In induction some contact with chemicals causes theperson to sensitize to at least one class of chemicals. This contact can be one large chemical exposuresuch as a chemical spill or a pesticide application, or it can be a low-level, ongoing exposure such as onemight experience in a workplace with poor ventilation combined with copy fumes, perfume, andchemical cleaners. After induction the person develops sensitivity to the chemical that was involved inthe exposure and to other related chemicals. Thereafter the person will respond with symptoms whenexposed to any of this class of chemicals. This is called “triggering.” The sensitivities developed areusually more or less permanent, although the kind and intensity of reactions may vary. In what is calledthe “spreading phenomenon” the sensitivities tend to spread over time to other related chemicals and alsoto other classes of chemicals. The primary way to avoid reactions once sensitivities have developed is toavoid contact with the triggers. With each new sensitivity this becomes more difficult and the person’saccess becomes more limited. For this reason one of the major goals in helping people with MCS is to tryto limit the spreading by reducing chemical exposures in order to preserve what tolerance the person stillhas. Unfortunately it is not unusual for people developing MCS to continue to expose themselves tochemicals because at first they do not link their reactions to chemical exposures and/or do not know thatrepeated exposures can cause a worsening or spreading of their sensitivities.Although less is known about electrical sensitivities (ES), people who experience them report thatthey develop in much the same way as MCS. An initiating exposure to an electrical field causes thesensitization, which then sets the person up to experience negative health effects in response to anyfuture contact with electrical fields or radiation. Avoidance of electrical fields is then necessary in orderto avoid debilitating health reactions.What Kinds of Negative Health Reactions Occur?MCS symptoms can affect any organ system including respiratory, digestive, neurological, endocrine,urinary, cardiovascular, or immune. The health problems experienced from each trigger vary from personto person, but tend to be stable for each person with each trigger. This means that one person may have aconstellation of symptoms from petrochemical exposure such as vehicle exhaust that includes headache,confusion, dizziness, and nausea. This constellation occurs each time that person has a petrochemicalexposure. There are many symptoms that people can experience from chemical exposure. The five mostcommon symptoms in my research were tiredness/lethargy, difficulty concentrating, muscle aches,memory difficulties, and long-term fatigue. This suggests overlap with chronic fatigue syndrome. Othercommonly reported symptoms include digestive problems, joint pain, headache, irritability, tenseness,spacey feelings, insomnia, depression, difficulty making decisions, pressure in the head, rhinitis,sleepiness, eye irritation, coordination problems, dizziness, slow response, chest pain, tingling fingersand toes, nausea, rashes, and hives. Symptoms from electrical sensitivities may include loss of musclecontrol, noise sensitivity, and other neurological problems.
Accommodating People with MCSPage 3The health problems triggered by chemicals in people with MCS vary from mild to life threatening,and for some pose very alarming situations. For example one woman in my study gets dangerous bloodclots from chemical exposures. An environmental physician described to me a patient whose heart stopsin public if she is exposed to chemicals. She has to have someone start it again.Which Chemicals Cause the Most Problems?In my research, respondents rated pesticides, formaldehyde, fresh paint, new carpets, diesel exhaust,perfumes, and air fresheners as being the most troublesome chemical exposures. This is congruent withother studies. Other triggers that are rated as being very problematic in various studies include tobaccosmoke, fresh asphalt, moth balls, nail polish and remover, phenol, fabric softener, furniture polish, drycleaning chemicals, hair spray, new vinyl plastic, chlorine bleach, auto exhaust, laundry detergent,natural gas, shampoos and conditioners, and newsprint.It is also common for people to suffer from inhalant allergies to pollens and molds, or from foodallergies. These problems further impair people’s functioning. In addition, some people’s lives arecomplicated by sensitivities to electromagnetic frequencies (EMFs), emitted by high-tension wires,transmitters, and other large sources of electricity as well as electrical appliances and other “small”sources found in the home. Although electrical sensitivity is less understood and accepted than MCS,there are some studies now that show that EMFs can alter the permeability of neurons, thereby affectingthe levels and circulation of brain chemicals (neurotransmitters). In a number of these studies, EMFs alsohave been linked to cancer (particularly in children) (Pinsky 1995). I have seen a person with EMFsensitivity lose the ability to walk within seconds of exposure to fluorescent lighting. One moment shewas walking fine and the next she appeared to have cerebral palsy simply from entering a building withthis type of lighting.Are These Reactions to Chemicals a New Medical Condition?Although MCS still is not officially recognized by the medical establishment in the U.S., illnessreactions from chemicals, particularly petrochemicals, are not new. Theron Randolph, M.D., thought tobe the “Father of Environmental Medicine” was studying allergic reactions to petrochemicals in thel950s, and called this problem “The Petrochemical Problem.” As in the case of most visionaries, he waspunished rather than rewarded for his work. He was fired from the University of Chicago School ofMedicine for being a “pernicious influence upon students.” Randolph’s book An Alternative Approach toAllergies, written with Ralph Moss, describes his early work, his theories, and the basic tenets ofEnvironmental Medicine. Claudia Miller (l996) believes that we need a paradigm shift in medicine thatwill take us to an understanding that toxicants are causes of not only MCS, but of a host of otherillnesses and disabilities. She believes that this shift in understanding is so substantial as to becomparable to the shift that occurred that ushered in the germ theory of disease. But very little trainingin toxicology is offered to medical students, and this shift will require a tremendous change in the waythat conventional medicine currently understands illness.Causes/Hypotheses About How MCS DevelopsExactly how do chemical exposures alter the body so that the person develops illness reactions tosubsequent exposures? Although no one knows for certain, most researchers and physicians whoseriously consider the problem believe that chemical exposure is to blame. The following are some of themajor theories on exactly how chemical exposures alter the body.
Accommodating People with MCSPage 4Limbic Kindling/Neural SensitizationA number of researchers