Alison Johnson Chair of the Multiple Chemical Sensitivity Foundation – Multiple Chemical Sensitivity: A Growing Health Disorder

On this week’s episode RadioJoe and I interviewed Alison Johnson, an advocate for people afflicted with Multi Chemical Sensitivity who has written books, produced films on the subject and is Chair of the Chemical Sensitivity Foundation.

Nuggets mined from this week’s episode:

• Asthma was once thought to be caused by domineering mothers leading to children being removed from homes with loving families. “Some members of the medical establishment have occasionally reacted to new disease syndromes by asserting that it must be psychological in origin, which is what happened with asthma. Similarly, some people assert that MCS is just a psychological problem.”
• “The fact that one doesn’t yet have a bio marker or blood test to diagnose MCS doesn’t mean it doesn’t exist, just that almost no research has been done in this field.” There are no blood tests for bipolar disorder and schizophrenia. Diagnosis for these illnesses is made by the patient describing symptoms to their psychiatrist
• “Alison suffered from MCS and was able to eliminate migraine headaches and arthritic pain by avoiding cigarette smoke, caffeine, fuel oil, and various strong chemicals.”
• The Chemical Sensitivity Foundation utilizes the 1999 multiple chemical sensitivity consensus definition: Consensus Criteria for MCS
• The following consensus criteria for the diagnosis of MCS were gleaned from the study by Nethercott et al.(14) (funded in part by grants from US NIOSH and US NIEHS):

1. “The symptoms are reproducible with [repeated chemical] exposure.”
2. “The condition is chronic.”
3. “Low levels of exposure [lower than previously or commonly tolerated] result in manifestations of the syndrome.”
4. “The symptoms improve or resolve when the incitants are removed.”
5. “Responses occur to multiple chemically unrelated substances.”
6. [Added in 1999]: Symptoms involve multiple organ systems.

• Alison opined that “ordinary allergy” is different than MCS. “It’s not just me opining. The professional organization of allergists several decades ago established a policy that reactions would not be termed “allergic” unless they associated with IgE antibodies. MCS reactions happen through a different mechanism, not IgE antibodies.”
• She sees way too much proliferation of chemicals. When one goes away there are 10 more to replace it. “Industry has strong lobbyists who try to convince the general public that MCS is simply a psychological condition.”
• Opines that MCS may be self induced when users of chemical products rely upon inadequate product labeling and safety warnings. She also said that the government and “big chemical” bear much responsibility for MCS.
• She is very concerned about Valdez oil spill cleanup workers, Gulf War Veterans (of whom 1/3 suffer from MCS) and those in close proximity to the 9/11 World Trade Center bombing.
• From her vantage point she doesn’t see accommodations being made with people suffering from MCS. “I hear of such accommodations being made in less than one percent of the cases in which people need help.
• Opines that air fresheners and perfume are not essential. “Alison thinks that the growing popularity of fragrance-free products suggests that an increasing number of people suffering from low grade MCS.”
• People with MCS have been using baking soda and white vinegar to clean their homes for years and now this is recommended by the American Lung Association. People with MCS or who want safer greener products should buy them in health food stores.
• When I queried whether or not she agreed with Anne Steinemann’s research, she said that Anne “was intent on showing that organic or green “fragrance-free” products have many of the same problems as regular products.”
• Alison noted that “people working with chemically sensitive clients on housing issues need to remember that many of them have a tremendously difficult time finding housing that doesn’t make them sick. As a result, many of them are quite desperate and insistent on obtaining what they need in order to have safe housing.”

RadioJoe & Alison proffered some advice for dealing with chemically sensitive clients:

• Customers often have years of pent up anger and frustration so listen to the customer and allow them to vent. (RadioJoe)
• Ask customer to commit their complaints to paper. (RadioJoe)
• Alice suggested that you tell the customer that you have experience with MCS.

Dieterism’s

• Is MCS sensitivity to two or more chemicals or just one?
• There is a difference between sensitivity and sensitization.
• Perhaps vaccination before military deployment plays a rule in MCS?
• Lobbyists are running our country and doing more damage than the people we elected.

Z-Man

Alice and I lean toward opposing poles on the subject of MCS. Alison is convinced that chemical exposures are the cause of MCS. Such exposures include the VOCs given off by mold, which is a substance that bothers almost everyone with MCS. My approach considers chemicals, biological and particulate or a combination of them as the culprit.

• Odors are known to trigger strong emotions, both positive and negative.
• Alison says that “many people with MCS prefer to use the word “fumes” instead of odors to avoid the implication that they are sick just because they don’t like the smell of something.” “A chemical sensitivity reaction is a physiological reaction to a low-level chemical exposure and not a reaction to an odor. There are some people with MCS who have lost their sense of smell, but they still react to chemical fumes.”
• In my experience when I was able to have the customer accept that their symptoms were caused by one or more of 3 possible classes: chemical, biological and particulate I was usually able to help them resolve the issue. When the customer was focused only on a chemical and unwilling to consider other factors, I generally was not successful in helping them.
• Fragrance is a polarizing issue. Some folks love them and others hate them. FYI, the Research Institute for Fragrance Materials works on making fragrances safer. http://www.rifm.org/vision.php
• Pesticides also get a bad rap by environmental groups. New pesticides are safer than ever before. Due to the Integrated Pest Management methods, pesticides are relied upon much less than they were previously.http://www.pestworld.org/

Today’s Music: Allergic to the 20the Century by Kim Palmer, YouTube

Z-man signing off