Lourdes Salvador's Column
...Co-founder of MCS America discusses the latest Multiple Chemical Sensitivity issues.
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MCS Terminology: Whats in a Name?
by Susie Collins
The Canary Report
Q: As Ive become ill, adjusted, been angered, etc, and still go round that vicious cycle there seems to be one glaring constant: No matter what title we come up with for this illness, the powers that be always seem to change it. For instance, when I became ill we mostly called it Environmental Illness. Now its widely known as Multiple Chemical Sensitivity (MCS). Toxic Induced Loss of Tolerance or TILT has taken hold in some circles.
I understand we need a more succinct definition for the illness. But whenever we have done that, whatever governmental organization that decides it is a threat then changes the word and/or definition. The sufferers are left hanging in the wind. I also understand a need for recognition. I might be wrong but why arent we sticking with immune dysfunction? That is precisely what we have. It is a medically established term already accepted by the medical community no fighting. Is this too simplistic?
The diagnosis my original toxicologist came up with is: Immune Dysfunction, Toxic Encephalopathy, Peripheral Neuropathy, Reactive Airway Disease Syndrome with symptoms of Multiple Chemical Sensitivities and food allergy. All have acceptance by the medical community. Id like a dialogue on this.
A: Excellent discussion topic. I understand your wanting to find a consistent and recognized name for our illness. But current research shows the core cause of Multiple Chemical Sensitivity is not simply immune dysfunction. In fact, some of the leading research shows its a whole new disease paradigm. So to label it solely as an immune dysfunction disease would be inaccurate.
Its true that for insurance claims, its sometimes best to go with a fully recognized illness in order to get your claim through. This is easy when you have symptoms that match up with illnesses like asthma or seizures or toxic encephalopathy. But none of those symptoms are the whole story of MCS. For example, many with MCS may indeed have toxic encephalopathy, which is simply toxic brain damage. Because of this, the brain-related symptoms of MCS are a type of toxic encephalopathy. But studies show there are also peripheral sensitivities in most cases of MCS, for example skin or digestion, and these are locally produced and thus are not caused by toxic encephalopathy.
Multiple Chemical Sensitivity is the predominant name in the scientific literature and therefore, there is no way to access the scientific literature without using that name. I, along with many researchers, think its a good description of what the disease is. Further, governments are using the term Multiple Chemical Sensitivity or chemical sensitivity in regulations and definitions about the disease (example at U.S. Department of Housing and Urban Development or HUD), and this is true in other countries as well such as Japan and parts of Europe where MCS is fully recognized by the governments.
From my observation, it appears most people who want a change in the term Multiple Chemical Sensitivity/ies have one of two agendas: either 1) their hypothesis about MCS does not match the descriptive meaning of multiple chemical sensitivity and they are trying to promote their own work or organization (these people and groups tend to be on the side of wanting full recognition of the disease but just under their own terms), or 2) they have an agenda of marginalizing the patients, researchers, attorneys, physicians, etc, who are using that term (these people tend to want to debunk the illness and have an agenda to stop any recognition whatsoever of the disease).
I think the overarching problem is not the term Multiple Chemical Sensitivity, its the lack of understanding and full recognition of the illness itself even though there is a large body of peer reviewed, published research out there that uses the term MCS, and several governments, including the U.S., that are using the term in regulatory and descriptive documents.
(Originally published at http://www.thecanaryreport.org/2010/09/15/ask-the-canary-4/)