Management of Chemical Sensitivities in CFIDS
Jim Leroy, The CFIDS Chronicle, 10(2):45-51. Spring 1997
In my own case, addressing food and chemical sensitivities has been the single most effective action I have taken to reduce the profoundly debilitating effects of CFIDS. After realizing that I was chemically sensitive and taking steps to deal with this aspect of my illness, I regained 80% of my lost cognitive functioning. Managing my chemical sensitivities has also freed me from a substantial portion of the misery wrought by this illness, sharply limiting headaches, mood disorder, nausea and, to some extent, fatigue.
"Sensitivities" is a mild sounding word. The effect of chemical sensitivity reactions can be anything but mild. In looking for an analogy to describe the potential severity of a chemical sensitivity reaction, I am reminded of my mother's description of migraines: unrelenting, all-encompassing, like an eclipse had swallowed the light of life.
The tragedy of chemical sensitivity among people with CFIDS is that so many are unaware that this aspect of their illness is the source of much of their suffering. I use the word tragedy because chemical sensitivity can be one of the most manageable aspects of CFIDS.
One critical reason for the lack of recognition of the extraordinary effect that chemical sensitivity can have upon people with CFIDS is the elusive nature of the condition. It is usually not intuitively obvious if one has developed chemical sensitivities, even if they are severe. A phenomenon called "masking" inherent in the disorder conceals these sensitivities. I am a person with CFIDS. I also have a raging set of chemical sensitivities, yet it took me years to figure this out.
The following article explains the method by which chemical sensitivities can be "unmasked," as well as offering some initial clues that may be helpful in suggesting whether chemical sensitivities might be affecting you. Most crucially, a short, practical program for addressing chemical sensitivities is provided on the last page. A set of basic information about chemical sensitivity for those unfamiliar with the condition is included as well: treatments and tests of which to be wary, resource books, support organizations and evidence of the degree of credibility that MCS has gained in recent years.
The Tricky Part
of Diagnosing MCS
Addressing food and chemical sensitivities has been the single most effective action I have ever taken to reduce the profoundly debilitating effects of CFIDS.
If I awake in a room that is regularly cleaned with Pine-sol, roll back the covers of my bed with sheets and pillowcases freshly laundered with scented detergents and fabric softeners, stumble out for breakfast into my kitchen which still reeks from last week's pesticiding, splash on some after-shave and drizzle hair spray over my locks before dashing out the door, there is no way I am going to notice that fumes from the new chemically treated carpeting in my sister's home are also making me ill.
(1) Brain fog, characterized by an inability to think clearly, losing one's train of thought in the middle of a sentence, an inability to remember words or difficulty concentrating
(2) Mood disorder, which is often described as being almost incapable of feeling good or happy;
(3) Respiratory problems, such as asthma or rhinitis; and
Symptoms of reaction can also include problems in balance or coordination, nausea, migraine and fatigue. Although occurring less frequently, these symptoms can be the primary chemical sensitivity reactions experienced.
An important characteristic of chemical sensitivity reactions is their duration. One might think that reactions would lift immediately once the offending substance has been withdrawn. Unfortunately, this is not the case. For me, once a chemical sensitivity reaction has begun, it takes five to six hours for the symptoms to lift. In rare cases where exposure is intense or prolonged, it can take weeks or even months for the reaction to lift completely. I say "rare" because I do everything in my power to remove myself quickly from an exposure once I notice that a reaction has begun.
However, once unmasked, chemical sensitivity reactions usually begin swiftly. In my case, it often takes less than five minutes after exposure to chemical fumes from such sources as fresh paint, nail polish remover or ammonia cleaners for a chemical sensitivity reaction to begin. Usually, I can detect that a reaction is imminent by relying on early warning signals I've learned to observe. However, delayed reactions are possible, although I've rarely experienced a delay of more than 24 hours.
Chemical Sensitivity Reactions From Other CFIDS Symptoms
The best time to distinguish between symptoms caused by a chemical sensitivity reaction and the more general symptoms of CFIDS is when CFIDS symptoms are least severe. Chemical sensitivity reactions can be observed more easily when fevers, flu-like aches and fatigue are less intense, simply because chemical sensitivity reactions will stand out more prominently. In my own experience, chemical sensitivity reactions do not diminish when CFIDS is in remission.
For example, do you dislike or like the smell of perfume, gasoline, paint, pesticides, cigarette smoke, hair spray, new carpeting, dry cleaning or combustion fumes? In speculating that chemical sensitivity may mimic the effects of addiction, some MCS experts suggest that chemically sensitive people may actually develop an affinity for those substances to which they are most sensitive. (An explanation for this odd tendency is proposed in Chapter 1 of the book An Alternative Approach to Allergies, by Theron Randolph, MD.)
Filling out the chemical questionnaires in Chapter 19 of An Alternative Approach to Allergies may also be helpful. These questionnaires provide an extensive list of the various substances to which chemically sensitive people may react. However, the only way that chemical sensitivities can be accurately confirmed is by personally observing the onset of symptoms following exposure to an offending substance. Because reactions to individual substances are usually "masked" in the beginning, often the only way to detect chemical sensitivity reactions is to begin a program of avoidance which will reduce the total load of exposures down to a point where individual reactions begin to stand out. The next section provides a description of such a program.
Frankly, when I first heard about chemical sensitivity, I quickly dismissed the possibility that such a diagnosis could be helpful, even if it applied to me, for lack of answers to the following obvious questions:
Here are answers I have since discovered: Yes, synthetic chemicals abound. However, the goal in managing chemical sensitivities is not to eliminate exposure to every offending chemical, but to reduce exposure levels down to those which the body can manage. Yes, there are thousands of synthetic chemicals currently produced. However, the chemical products which tend to cause the greatest problems for chemically sensitive people in everyday life comprise a small fraction of the planet's inventory. A simple, targeted program of avoidance can vastly reduce exposure to those chemical sources which represent the greatest threat to chemically sensitive people.
A practical beginner's guide for addressing chemical sensitivities appears at the end of this article. Chemically sensitive people will feel better on a program of avoidance. The improvement probably will be slow and it may take many months to fully reap the benefits, but it is reasonable to expect to see signs of improvement after two to six weeks.
The ultimate confirmation of chemical sensitivities is to observe reactions after an exposure. Going to a poorly ventilated movie theater on a Saturday night when people are so highly perfumed that one might expect a transient spark to ignite an instant inferno, I will react every time and the reaction will be nearly identical, give or take the precise chemical formulations of the aromas worn by those sitting closest to me. (As a result, I have become an exceedingly infrequent patron of movies on this night of the week.)
The point of this story is that, once unmasked, chemical sensitivity reactions are easily replicated. The final confirmation of my own chemical sensitivities occurred when I was able to observe the same reactions to the same exposures, over and over again. It felt (and actually was) just like a science experiment.
The final confirmation of my chemical sensitivities occurred when I was able to observe the same reactions to the same exposures, over and over again. It felt (and actually was) just like a science experiment.
As with chemical sensitivities, food sensitivities are usually masked in the beginning. Food sensitivities are most easily unmasked by the use of elimination diets. For example, abstain from all milk and milk products for 10 days and then perform a challenge test by drinking a large glass of milk, watching for signs of reaction. When performing an elimination diet, it is most effective to avoid other foods in the same food family during the test period. When testing for wheat, for example, also avoid other grains.
In an act of perversity for which the cosmos has become famous, people are often sensitive to their favorite foods, particularly those eaten most frequently. As with chemical sensitivities, the most effective method for treating food sensitivities is avoidance. Some books propose adopting a gruesomely demanding regimen called a diversified rotation diet to prevent the development of new food sensitivities. Performing the rotation diet for a few months is an excellent way to identify food sensitivities. However, neither I nor most of my food-sensitive friends have found it necessary to maintain this regimen permanently. Note: The chemically sensitive should be particularly wary of processed foods containing chemical preservatives or additives.
Tests for Chemical Sensitivities
Unfortunately, I am not aware of any controlled, double-blinded evaluations of these tests that have yielded consistent results, let alone accurate ones. By consistent, I mean that the patient repeatedly responds in the same way to the same trial substance each time. By accurate, I mean that the results of the tests, as well as being consistent, also reliably identify substances to which an individual is actually sensitive in everyday life. (Some of these tests also can be quite expensive.)
Some people believe that these tests can be useful, particularly in emergency situations where few other options are available. To anyone about to embark on in-office testing, I would propose the following: Ask the practitioner to perform the tests on you in a double-blinded manner, with the same test administered several times. Include a "blank" in the testing. (For example, sterile water.) Neither you nor the person administering the test should know what is being tested. This method at least will verify that the tests provide consistent results. It will not determine if the results accurately reflect significant sensitivities that you experience in everyday life. However, if consistent results cannot be obtained, then the tests are clearly useless. Any legitimate practitioner should be willing to perform these tests in a double-blinded fashion.
Treatments for Chemical Sensitivities
Although the two seem similar, the widely accepted validity of desensitization therapy in the treatment of conventional allergies cannot be used as grounds for asserting that neutralization therapy is an effective treatment for the chemically sensitive. The mechanisms by which conventional allergies and chemical sensitivities function are entirely different. Conventional allergies trigger an "IgE-mediated-response." When people with allergies to dogs, cats, pollen and mold have an allergic reaction, the reaction can be observed in the blood by a rise in immunoglobulin E. Chemical sensitivity reactions are not IgE mediated. Some other, as-yet unidentified, mechanism is at work.
In practice, neutralization therapy can be very expensive and appears not to work very well. In a survey  of 305 chemically sensitive people from 43 states conducted by DePaul University researchers in 1995, only 22% of those who had tried neutralizations for chemicals reported this treatment to be significantly helpful. (Neutralizations for foods scored even worse.) More troubling, 16% found the treatment harmful. At the same time, 93% reported being significantly helped by avoidance strategies. As a leader of MCS support groups in Chicago for five years, I knew of few people who found neutralizations to be significantly helpful. Some did find neutralization therapy useful in emergency situations. However, I knew of virtually no veteran members of our groups who continued to pursue this treatment on an ongoing basis.
Neutralization treatment is employed most widely by a group of doctors who describe themselves as clinical ecologists or specialists in environmental medicine. Unfortunately, neutralization therapy is the >em>primary mode of treatment used by many of these doctors in their approach to the management of chemical sensitivities.
Please note that, while the broad-scale effectiveness of neutralization is questionable, physicians specializing in the care of the chemically sensitive can be very helpful in providing basic education about chemical sensitivities, addressing secondary medical problems without exacerbating a patient's chemical sensitivities, and in offering testimony to disability review panels.
Other widely used treatments that scored particularly poorly in the DePaul survey of people with chemical sensitivities were dental amalgam removal (significantly helpful for only 28%), acupuncture (significantly helpful for 26%), colonics (significantly helpful for 24%, harmful for 13%), the anti-fungal drug nystatin (significantly helpful for 22%, harmful for 23%) and the anti-fungal drug nizoral (significantly helpful for 19%, harmful for 34%).
(Note: The first two books also cover food sensitivities.)
A book that lists alternative products to those which can be hazardous for the chemically sensitive is Less Toxic Living, by Carolyn Gorman, available from MCS Referral & Resources at 410/448-3319. Books listing a wider range of alternative products but not specifically written for the chemically sensitive include Nontoxic, Natural & Earthwise and The Nontoxic Home, both by Debra Lynn Dadd.
The word "allergy" in the titles of several of these books is used in its most generic sense as simply an atypical reaction to a substance. To avoid confusion with conventional, lgE-mediated allergies, the word "chemical sensitivity" was coined in the late 1980s.
You may also wish to contact Share, Care and Prayer, a national Christian-oriented support organization for people with MCS or CFIDS, at: PO Box 2080, Frazier Park CA 93225.
Let me offer whole-hearted encouragement along with a bit of advice about attending MCS support groups. The comradeship and practical suggestions I received from other people with chemical sensitivities made it vastly easier to carry out the changes needed to address my chemical sensitivities. Many of the best experts on managing chemical sensitivities (and some of the finest people I've ever met) can be found within these groups. Often, the best support can come from phone friends located through these groups.
However, I can guarantee that some people with CFIDS will be told by MCS members that all of their CFIDS symptoms are attributable to chemical sensitivity exposures. (I know because I used to believe this, too.) The old aphorism comes to mind: "when your best tool is a hammer, sometimes everything looks like a nail." Also, a few MCS support group members are infamous for scaring the bejeebers out of newcomers by implying that one is at great peril for disastrous consequences unless every scintilla of potential exposure is immediately eradicated from every corner of one's life.
Relax. Take one step at a time. The worst danger is to become overwhelmed and do nothing. Any avoidance regimen is ultimately trial and error. If you try something and it doesn't help, drop it and try something else.
Chemical Sensitivity Have Credibility?
Public Health Agencies
Until the cure comes, addressing chemical sensitivities may be one of PWCs' most productive and widely available avenues to significantly improved health.
The leader of this CFIDS group was asked several times to post a message in meeting announcements requesting that people not wear perfume or other scented products when attending meetings out of deference to those CFIDS members who were chemically sensitive. The request was declined. I was told that such a request would "infringe on the personal freedoms" of those attending and was therefore unacceptable.
The majority of CFIDS support groups I have attended have been understanding and supportive of those members who were chemically sensitive. However, in some quarters of the CFIDS community, chemically sensitive people are ostracized, as demonstrated by the above story.
However, the reluctance to even discuss the presence of chemical sensitivities creates real problems. One obvious problem is that there are undoubtedly a substantial number of CFIDS people with undiagnosed chemical sensitivities. The lives of these people are more miserable than necessary, in large part because most have never been told that those with CFIDS are highly likely to also be chemically sensitive, a condition which, once discovered, actually can be quite manageable with proper information.
However, by addressing my chemical sensitivities, the striking improvements I did experience have been a godsend. The extraordinary recovery of my cognitive functioning alone has been well worth the effort I put into managing my chemical sensitivities.
Until the cure comes, I believe that addressing chemical sensitivities may be one of the most productive and widely available avenues to significantly improved health on the part of many people with CFIDS.
1. Buchwald D, Garrity D: Comparison of patients with chronic fatigue syndrome, fibromyalgia and multiple chemical sensitivities. Arch Intern Med 1994;154:2049-2053.
2. LeRoy J, Davis T, Jason L: Treatment efficacy: A survey of 305 MCS patients. CFIDS Chronicle 1996;Winter:52-53.
3. Meggs W, Cleveland, Jr C: Rhinolaryngoscopic examination of patients with multiple chemical sensitivity syndrome. Arch Environ Health 1993;48(l):14-18.
4. Heuser G, Wojdani A, Heuser S: Diagnostic markers in chemical sensitivity in: Multiple Chemical Sensitivities: Addendum to Biological Markers in Immunotoxicology, Wash, DC: National Academy Press, 1992.
5. Meggs W, Dunn K, Bloch R, Goodman P, Davidoff A: Prevalence and nature of allergy and chemical sensitivity in a general population. Arch Environ Health 1996;51(4):275-282.
6. Kipen H, Hallman W, Kelly-McNeil K, Fiedler N: Measuring chemical sensitivity prevalence: A questionnaire for population studies. Am J Pub Health 1995;85(4):574-577.
7. Bell I, Miller C, Schwartz G: An olfactory-limbic model of multiple chemical sensitivity syndrome: possible relationships to kindling and affective spectrum disorders. Biol Psychiat 1992;32:218-242.
8. Miller C: Chemical sensitivity: history and phenomenology. J Toxicol Indust Health 1994;(4/5):253-276.
9. The National Ecological and Environmental Delivery System (NEEDS) is an organization which sells air purifiers, nutritional supplements, books and other products of interest to the chemically sensitive. Free catalogs are available by calling 800-634-1380.
of Managing Chemical Sensitivities
Ground Zero: Unequivocally eliminate the use of:
Level 1: Use safer laundry and cleaning products free of such additives as ammonia, chlorine, formaldehyde, phenol, scents and sulfur compounds.
Level 2: Use safer personal care products, free of such additives as alcohol, formaldehyde, nitrates, plastic compounds, phenol and scents.
Level 3: Create an "oasis" in your bedroom.
Level 4: Create or Choose a Safer Home
The author wishes to thank the following people for their generous contributions to this article: Janet Dauble, Albert Donnay, Ann Jackson, Dr. Leonard Jason, Shirley Kaplan, Sarah LaBelle, Lynn Lawson, Susan Molloy, Christa Munson, Dr. Lawrence Plumlee and Dr. Grace Ziem.
Jim LeRoy was the coordinator for MCS support groups in Chicago for five years in the 1980s. Jim, a writer, lives with his wife Sarah LaBelle in Oak Park, Illinois.
This article was originally published in The CFIDS Chronicle, 10(2):45-51, Spring 1997.
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