The Fragmenting Nature of MCS
Editorial by Cynthia Wilson, CIIN
Our Toxic Times May 2004
Reprinted with Permission
When people started getting sick with chronic fatigue, doctors and sufferers agreed on some basic principles. They agreed that they didn't know what was causing the condition, they agreed that treatments were based on educated guess work, and they agreed that there was an over-riding need for research to establish not only the cause of the illness but the best treatments for it.
Working together, chronic fatigue doctors and patients have been able to establish government accepted diagnostic criteria for the condition and have been able to get substantial research funded.
MCS appeared in the medical literature more than 30 years before chronic fatigue. Yet, the commonality and unity of purpose in the chronic fatigue community has enabled it to overtake and even subvert MCS - often treating MCS as if it were nothing more than a psychological response to having chronic fatigue for a prolonged period of time. Chronic fatigue sufferers were able to put together a national support group with an impressive membership base, especially in the early years of establishing their illness.
Unfortunately, that is not the case with MCS. While several case definitions have been proposed for MCS, even doctors who are members of the American Academy of Environmental Medicine (AAEM) use different diagnostic criteria for the condition. For example, one prominent AAEM doctor maintains that MCS is an immune system disorder and treats it like an allergy; another prominent AAEM doctor acknowledges MCS is a neurologic condition; and yet another AAEM doctor maintains that MCS is nothing more than Candida. And worst of all, still another doctor (medical affiliations unknown) diagnosed MCS in a family's three children based on their symptom of biting their fingernails.
An MCS prevalence survey conducted by the California Department of Health in 1999 found 6.3% of the respondents reported they had been diagnosed by a doctor with MCS/EI. Yet, 2.7% of them reported they did not react adversely to chemical exposures. Unanswered is the question of whether the 2.7% were actually diagnosed with MCS or EI and how the confusion over the two terms may have confounded the findings.*
And the consensus among MCS sufferers is equally divided. There are those who think the "cure" has to be out there. And unfortunately there are enough doctors claiming to cure MCS that these patients don't have to look very far for support of the idea. In my experience, however, most of the people who claim that their MCS has been cured usually qualify their statements. They say, "As long as I avoid perfumes, detergents, pesticides, and petrochemical fumes, I'm fine." My response to that has always been, "Duh!" In an exposure-driven illness, that's true for anyone who's succeeded in cleaning up their environment. However, no matter how well someone feels, if they still have to practice avoidance to maintain their health, that's not being cured - though not all MCS sufferers would agree.
All of the published (proposed) definitions for MCS state that MCS is a reproducible response to a chemical exposure, and that symptoms must abate if the source of exposure is removed. Yet, in practice that is often ignored.
Several supposed MCS sufferers maintain that they had to take to their beds for years from a single exposure, and then miraculously they recovered - and most recovered with no chemical sensitivities. While I have never once doubted that these individuals were dreadfully ill or that their illnesses were environmentally and/or chemically induced, I also have no doubt that MCS alone was not the reason these people were bedridden.
We know that some illnesses and treatments can make some people chemically sensitive temporarily. Chemotherapy patients are warned that their treatments may make them temporarily chemically sensitive. I've only heard of one patient where the chemical sensitivity didn't stop when the cancer treatment was over. And I've also seen a case where a man became chemically sensitive while on heart medication, and once he had surgery to correct the problem and was taken off the medication his chemical sensitivity disappeared.
Recovery stories like these get mixed up with the MCS mythology because we have no mechanism in place to give perspective to this information.
This medical confusion helps to divide sufferers. There are sufferers to support any view of MCS someone can think up. One man called to let me know that MCS was caused by asthma inhalers. His whole support group believed that in order to have MCS, you first had to have asthma. When I explained that many CIIN members, including I, had never been diagnosed with asthma, he didn't believe me and became extremely upset that CIIN wasn't going to focus it's MCS education efforts on warning people about the dangers of asthma inhalers. An extreme example of this is a woman who believes MCS is caused by aliens living on the moon. These aliens come out at night and shoot neutrinos at the earth giving people MCS. Every couple of years, she writes a letter to NASA begging them to end the coverup, and since 1991 she has been sending CIIN copies of these letters. She stopped being a CIIN member because of its belief that she was actually being made ill by the garbage dump across the street. She still sends copies of her letters because she believes CIIN desperately needs educating as to the real cause of MCS.
Those who know that they are going to recover don't want to get depressed by those who believe MCS is a chronic condition. The "cure" people believe that people who've accepted MCS as a chronic condition have just given up. While the "chronic condition" people view the "cure" people as chasing after a pipe dream when they should be figuring out how to live with the condition. Sharon Wachsler drew a very funny cartoon on this exact subject.
I believe the multitude of proposed etiologies and treatments for MCS is one of the major reasons why a cohesive MCS community has never formed. Instead, we are a collection of people who share symptoms, but have little else in common. Originally, the Human Ecology Action League (HEAL) was part of the AAEM. Doctors helped form individual groups centered around providing patient support for their specific treatments. While HEAL is no longer part of the AAEM, it still requires 2 doctors to sign on in order to start a HEAL chapter.
Another major reason for the fragmentation is that groups are polarized over MCS issues. Mary Lamielle started the first non-medically affiliated support group called the National Center for Environmental Health Strategies. It focused principally on political action. Now there are a plethora of national and local support groups focused on various aspects of MCS, but none have been able to provide a commonality or unity of purpose. For example, the Environmental Health Network of California concentrates on fragrance issues, the Canary Foundation almost exclusively covers pesticide health concerns, and the Chemical Injury Information Network maintains that before any progress can be made we must force the government to give MCS a case definition. There are also groups formed to support people who have been poisoned by specific chemicals, such as the Citizens United to Reduce Emissions of Formaldehyde Poisoning Association and the Victims of Fiberglass. There are also support groups for specific treatments like NAET.
In 1996, a group of concerned MCS group leaders got together to outline a national, umbrella organization for MCS. The intent was to give MCS a cohesive national agenda and the numbers (body count) to make the organization politically viable. The result was the National Coalition for the Chemically Injured (NCCI). Unfortunately, the NCCI was never able to attract enough volunteers to make it work, and two national MCS groups actually spoke against the organization.
This illustrates another problem in organizing MCS sufferers. We are not only divided by our beliefs, we are also the victims of the neurobehavioral problems that MCS creates. The three most problematic neurobehavioral problems that interfere with getting sufferers organized have been: irritability, paranoia, and indecision, all of which can accompany an exposure.
An extreme example of how this plays out in organizations took place several years ago. There was a disagreement at a group's Board of Directors meeting. After the meeting, the leader of the side that lost took his car and attempted to run down the leader of the side that won. Another lesser example occurred when a small support group asked a national support to give it the money to host a fundraiser. When the national group asked the smaller group to submit its request in writing with a budget so its Board of Directors could vote on it, the small group thought it was being grossly abused and started sending the national group easily recognized, but unsigned hate-mail.
I've often wondered if this fractious potential of MCS sufferers is why most of the national, and many state, MCS support groups don't answer their phones.
In the 50-year history of MCS, sufferers have not found a way to form a cohesive national front. Most doctors and sufferers blame the chemical industry for the lack of progress made on MCS research and entitlement issues. They play a role, but mostly it's us - we are our own worst enemy. We've done more damage to ourselves than industry ever could. I've long maintained that you could put 7 people with MCS around a table with a million dollars on it. The group could spend the money any way it wished so long as they came to a unanimous agreement on how the funds would be spent. I honestly believe the money would never be in jeopardy of being spent.
Somehow, someway we have to find a way to build and support a national agenda. Somehow, someway we have to actually build a real MCS community.
*In 1994, the AAEM published an editorial by then President, David Buscher, M.D., where he listed over 20 different conditions that are considered envionmental illnesses.
Copyright 2004, Cynthia Wilson, All Rights Reserved
Cynthia Wilson is founder of the Chemical Injury Information Network (CIIN). Reproduction of this editorial in whole or in part is not permitted without prior written consent from CIIN.