The Poisoned Well

By

Lucinda Hodges

Ever since I was drafted into the ranks of the chemically injured I have shied away from the term MCS. Being mostly consumed with surviving the injury I didn't think through my reluctance to use the term. Recently, I decided to learn a little more about the genesis of the acronym and discover what really lies at the root of the controversy in branding chemical injury. After all, what's in a name? 

I quickly learned that the term, multiple chemical sensitivity, was coined by Dr. Mark Cullen in a monograph he wrote in 1987. Unfortunately, with a little more research it became clear that over the course of the next twenty years Dr. Cullen never fully examined the injury he dubbed "MCS" so long ago.

The problem lies with Dr. Cullen's belief that MCS is not a treatable injury or disease, but largely a psycho-social behavior. In Cullen's own words, testifying in Perth Australia, in 2002, "Many of my colleagues, with some credible evidence on their side, believe that the role of chemicals is entirely symbolic. I want to make sure you understand that that is a credible view in the world. It does not mean they have no role but that the role is best viewed behaviourally in the way our dog behaves when it smells or hears something that makes it jump up, scratch and so forth. What happens after some experience with chemical odours is a behavioural response. It is a view that is in the community and one that cannot be completely dispelled." 

Dr. Cullen is testifying FOR Alcoa and AGAINST the claims of injury made by poisoned workers. Plainly put, the doctor who named the condition is no friend of ours. He testifies against injured people and plaintiff's on behalf of multinational corporations which has presented a nearly insurmountable medical and legal obstacle for those who use the term, or who have been branded by it, since 1987.

Rather than follow the science, Cullen followed the money. In 1996, as Director of Yale Occupational and Environmental Medicine Department, he formed a lucrative alliance between Yale and Alcoa, the worlds largest manufacturer of aluminum. I have no doubt that Dr. Cullen is proud of this public health - corporate - medical - conglomerate. But, what about us? Is it in the best interest of public health and scientific integrity for one of our most prestigious Universities to meld with a multinational chemical corporation and still call it science? Doesn't industry money poison the well and create a corrosive competing interest? Would you trust a doctor being paid by a chemical company to be objective in your medical treatment? Imagine if other pioneering doctors in the field of chemical injury such as Heuser, Kilburn, Rea, Ziem, accepted industry fees, bonuses and alliances? It would be unimaginable, and absolutely rejected as unacceptable by us.

If Cullen had only made more noble career choices the term MCS might now be a positive moniker for the chemically injured community. But that's not the path he chose, and whether intentional or not, his actions have surely poisoned the well for MCS. A fact which has not escaped the notice of his wealthy benefactor Alcoa; a company that rakes in nearly One Billion dollars annually in profits, is responsible for a multitude of American Superfund sites, and unabashedly funds 25% of Dr. Cullen's salary, plus an annual bonus as personal income.

Largely because of Cullen's erroneous conclusions, MCS is still not considered an injury, or a disease, and thus receives no federal funding for research and treatment. MCS is recognized under the ADA, but it is nebulous recognition at best that must be proven on a case by case basis. Simply put, there is a decades long battle being waged about the definition of MCS and we have been on the losing end of the war since the inception of the phrase MCS.
 

Dr. Grace Ziem, a well respected physician recently wrote a very compelling opinion piece in April's, Our Toxic Times, titled, Alternative Diagnosis More Appropriate for MCS. In part, this is what she stated, "While the term “MCS” is easy to remember, it was developed without adequate medical evaluation. Also, scientific advances confirm that medically recognized diagnoses can be documented in chemically injured patients. There is no longer a need to fight for recognition of a term that is not appropriate when there are good ways of documenting toxic encephalopathy and other already well accepted forms of chemical injury."

Kathy and I as creators of Pariah have decided to stand with Dr. Ziem and many other activists and leaders in our community. We believe the path to justice lies outside the umbrella of MCS. In recognition of this decision we've decided to change the name of our publication from Pariah, An MCS Journal, to Pariah, A Healing Journal.

Let's use the existing science and widely accepted medical diseases caused by chemical injury and let Cullen have his acronym. Twenty long years of a raging battle fighting for recognition of a condition, not an injury, named by a doctor who has become our worst enemy and where are we? Nowhere.

A note to the reader. Throughout this issue of Pariah you will find the term MCS used by our talented contributors. None of our contributors had advance knowledge of the content of The Poisoned Well so their choice of terminology should not be confused or misconstrued. In addition, we have the highest regard and respect for the unique world of the online chemically injured community. Many of you have founded groups, lists, petitions, campaigns, and websites based on the term MCS. The Poisoned Well is an opinion piece meant to provoke thought and is not intended to disparage the choices or efforts of other activists.

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