Searching for an Elusive Cure
A Message from Alison Johnson
Chair of the Chemical Sensitivity Foundation
The statements below represent my personal opinions, which are not necessarily those of other members of the CSF Board of Directors. These opinions are not intended as specific medical advice, for which you should consult your own physician.
I hope that this long “essay” will help chemically sensitive people to navigate their difficult lives during the period of years before mainstream medicine at last recognizes that MCS is a real physiological condition. Such recognition will foster research studies that attempt to unravel this puzzling disease process. It will also result in family, friends, employers, landlords, and others being much more sympathetic to the plight of the chemically sensitive and more willing to accommodate their needs. When fragrance-free workplaces become widespread, which I think will happen before many years pass, life will become far easier for those with MCS, and many of them will be able to make substantial progress in regaining their health. Promoting fragrance-free workplaces is a major activity of the Chemical Sensitivity Foundation; we are currently working to alert nursing homes and assisted-living homes about the danger that air fresheners and fragranced cleaning products pose to their patients.
Almost forty years ago I developed multiple chemical sensitivity. During the long ensuing period, I have accumulated a great deal of information about people whose lives have been severely impacted by MCS. An important part of this information was obtained firsthand because my daughters developed MCS during their adolescence. That challenging experience led me to search all over the country for a “cure” so they would be able to live a good life. The extensive knowledge I gained during that search has enabled me to help others with MCS through my books and documentaries. Most of my documentaries can be played on my website, www.alisonjohnsonmcs.com, where it is also possible to read the Introduction and first three chapters of my 2008 book, Amputated Lives: Coping with Chemical Sensitivity.
Like almost everyone who develops MCS, my first thought was to consult an allergist, but that isn’t necessarily a recommended course for the chemically sensitive. In recent decades, the leading professional organizations of allergists have announced that they deal only with adverse reactions that are characterized by IgE antibodies, and this is not the case with reactions to chemicals. Moreover, the shots that are the stock in trade of allergists generally contain preservatives that will be problematic for most people with MCS. In general, it is best to avoid using the term “allergic” when describing your reactions to a chemical substance, except perhaps in casual conversation.
One of my first efforts as an advocate for the chemically sensitive was to publish in 1997 the results of a survey that I conducted of 351 individuals who reported that they had MCS. In this survey, I asked what results they had had with 179 different therapies. I published a table of the results showing the total number of respondents who had tried each therapy and the number and percentage who reported the following results: “Effect Unclear, Harmful, Didn’t Help, Slight Help, Major Help, and Enormous Help.” Of these respondents, 45 percent had been diagnosed as also having Chronic Fatigue Syndrome, 29.3 percent as also having fibromyalgia, 41.7 percent reported that they were sensitive to electromagnetic fields, 46.5 percent were on disability, and 4 percent were on workers’ compensation.
This table showed that very few of the therapies that people had tried offered substantial help and some were harmful. There were two important exceptions, and seventeen years later these two “therapies” remain at the head of the list for what is most helpful to those with MCS. The first therapy, avoiding chemical exposures, was reported to be a “major help” by 30.5 percent of the respondents and an “enormous help” by 64.4 percent of the respondents. The second therapy, avoiding foods to which the respondents had developed an intolerance, was reported to be a “major help” by 38.7 percent of the respondents and an “enormous help” by 37.8 percent of the respondents.
Highly positive results for the avoidance of chemical exposures and problematic foods were also found in a survey published in 1996 by Jim LeRoy, Terry Davis, and Leonard Jason and in a survey published in 2003 in Environmental Health Perspectives by Pamela Gibson, Ph.D., who serves on the CSF Board of Directors. (For the latter study, see the Research Bibliography on this website.)
As an example of the efficacy of avoiding chemical exposures and problematic foods, I am including at the end of this discussion the story of my daughters and me as it appears in my first book, Casualties of Progress: Personal Histories from the Chemically Sensitive, published in 2000. Although the story of how each individual with MCS developed the condition and copes with it has its unique aspects, our story may help you see that your health can gradually improve as you reduce your level of chemical exposure and are more careful to avoid foods you no longer tolerate. Another important message of our story is that even though the future can seem bleak for young people who develop MCS, there are many cases in which they succeed in getting a good education and working in a productive career, provided they are careful to avoid chemical exposures when possible.
In my 2013 documentary, Multiple Chemical Sensitivity: A Life-Altering Condition, Dr. Christine Oliver, an Associate Professor of Clinical Medicine at Harvard Medical School and Co-director of Occupational and Environmental Medicine at Massachusetts General Hospital, offered this important message:
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.
This is admittedly a difficult message to accept when one is desperate to get back to a more normal life. Since I myself traveled all over this country seeking help for my daughters, I understand why so many people follow this course. Sadly, in almost every instance during our personal odyssey we spent large amounts of money to no avail; sometimes our efforts made things worse. At least the knowledge gained in that search has enabled me to warn others that seeking far and wide for a physician or alternative practitioner who can purportedly get great results with MCS patients is in most cases not likely to be productive. It will also use up large sums of money that would probably be better spent reducing toxic exposures in your home and diet.
During my decades-long experience with multiple chemical sensitivity, I have witnessed at least a half-dozen occasions when a great excitement swept through the MCS community over a purported new cure or solution to MCS. In many instances there were widely publicized accounts of how chemically sensitive people had been “cured.” The more times one observes this phenomenon, the more cautious one should become about taking such reports at face value. I have engaged in extensive research regarding these various therapies that supposedly have yielded such amazing results. This research included talking with many people who had tried these therapies, as well as talking with others who had observed the results of these therapies in their MCS friends. Follow-up interviews were invaluable; many people initially claimed great results from a therapy, only to have those results fade after several months.
Having spoken with many hundreds of people with MCS over the last few decades, I have gained the impression that for a small percentage of chemically sensitive people (perhaps in the range of five percent), their MCS is greatly exacerbated by the coexisting condition of obsessive compulsive disorder (OCD). It is possible that some of the small percentage of MCS people who also suffer from OCD will respond favorably to a faith healer or some unusual new therapy because their strong belief in that faith healer or therapy overrides their OCD. Most chemically sensitive people whom I encounter do not suffer, however, from obsessive compulsive disorder. They are not obsessed with the idea that they are likely to react to low-level exposure to various chemicals. They are only trying to deal as rationally as possible with their knowledge of what will, for example, trigger a migraine headache. Their reactions to various chemicals are simply a reality with which they have to deal in a rational way, just as a person who is allergic to peanuts must be highly vigilant about avoiding peanuts.
When word of an almost miraculous new therapy begins to sweep the MCS community, there is much to be said for watching and waiting, in effect letting someone else be the guinea pig. If a new therapy really gives lasting results for a substantial percentage of those who try it, that will become apparent within a year or so.
Another word of caution. When you are in the early stages of MCS, you may be so happy to find a physician or alternative practitioner who has some knowledge of the condition and believes it to be physiologically based that you are not sufficiently critical in evaluating that health care provider and the therapies that he or she offers. Yes, validation is enormously reassuring, but as an alternative to “doctor shopping,” I would suggest you consider providing your primary care provider with some educational information about MCS to help him or her understand how this condition affects your health. The Chemical Sensitivity Foundation can at no charge send you a copy of a booklet that consists of the first 48 pages of my book Amputated Lives: Coping with Chemical Sensitivity, along with several colored publicity cards about my latest DVD, Multiple Chemical Sensitivity: A Life-Altering Condition. These cards let people know that the video can be played on YouTube; the cards also contain endorsements of my MCS documentaries from leading members of Congress and the former Commander of Walter Reed Army Medical Center. Any skeptics who read the card may begin to reevaluate their opinion about chemical sensitivity.
While the CSF will at no charge provide a few cards for the above purpose of educating your physician, we will also be glad to send a dozen cards to anyone who sends us four first-class “Forever” postage stamps to cover mailing costs. These cards are very useful for educating people about MCS in a non-confrontational way.
Most people with severe MCS are very short of money because they can no longer work, so it is especially important that they use their scarce resources wisely to reduce their exposure to toxic chemicals. One of the most productive ways for someone with MCS to spend their money is to replace a gas stove with an electric stove or to modify their heating system to reduce their exposure to combustion products. For more information on this important topic, click on the tab in the left column of our home page and other website pages that says “Heating Systems and Gas Stoves.”
Since it is not easy to control the use of fragranced products by others, it is important to do what you can in the parts of your life that are more under your control. For example, most people with MCS find that chocolate and coffee are problematic for them, probably because of the caffeine content. Even tea or decaf tea and coffee, which still contain a small amount of caffeine, can be a problem. People with MCS also usually find that limiting their sugar intake is of substantial benefit.
Because people who develop MCS almost always develop some food intolerances, it is worth experimenting with omitting certain foods from your diet for at least four days and then reintroducing them to see if there is any clear effect from that reintroduction. Two books written by members of the CSF Board contain useful sections about such experimentation with diet. See Part III of The Inflammation Cure Cookbook, coauthored by William Meggs, M.D., Ph.D., or Chapter Five of Multiple Chemical Sensitivity: A Survival Guide by Pamela Gibson, Ph.D.
In closing, I am including here a link to the story of myself and my daughters as it appeared under the title "Alison" in my 2000 book Casualties of Progress: Personal Histories from the Chemically Sensitive.
to download the excerpt from Alison's book.