MCS Frequently Asked Questions

Q&A.jpgQuestions from friends, family and people in the community

**Please note that MCS is sometimes referred to as Toxic Injury, EI and TILT** 

What is MCS? I have never heard of it, is it a real thing?
The American Academy of Environmental Medicine says that MCS is a very real chronic medical condition which is often quite devastating and at times can be a completely disabling illness.
MCS is a condition where your body reacts severely to synthetic and/or processed chemicals found in every day products. Each person with MCS reacts to different products, and reactions vary from person to person. Some symptoms include dizziness, shortness of breath, cognitive and memory impairment, gastrointestinal issues, anaphylaxis, and a host of other symptoms from a multitude of body systems. Everyday products that can trigger a reaction include: perfume, air freshener, hygiene products, laundry products, cleaning products, paint, construction materials, newly acquired products, makeup, vehicle exhaust, etc.

Which countries recognize MCS as a disease?
Spain (2014)

Germany (2000)

Austria (2001)

Japan (2009)

Switzerland (2010) 

Denmark (2012)

Also click here to read about measures taken by other European countries for MCS.

What can I do if I want to visit you? What preparations have to be made so you don’t have a reaction?
Please read this list of helpful tips and instructions for when you are visiting someone with MCS.  A subscriber to this blog also sent in these recommendations:
Wash clothing a minimum of three times in products designated as safe. Shower, and refrain from applying any reactive products for a minimum of two days. Place a detoxed car seat cover over the seats of your cars. Do not drive a car that uses any type of air freshener, fabric refresher, or has been detailed in the last week. Do not stop at any public buildings along the way. Upon arrival at my house, you may be required to shower again and/or change into alternate clothes if you are contaminated by your car or environment. You may be required to wear a shower cap to contain any residual chemicals in your hair. Your best bet is to alter your products, and opt for fragrance-free choices. This will benefit both my health and yours.

Can’t you get better with sleep, prescription drugs or supplements?
Treating MCS is often inaccessible because most doctors do not accept insurance and if they do, treatments aren’t covered resulting in thousands of dollars per month just to keep this disease from progressing. People with MCS often react to prescription drugs as they contain chemical compounds that can cause a reaction in multiple systems.
Both traditional medicine and holistic treatment protocols exist and there have been successful cases of recuperation but that is only after years of treatment and followup in addition to practicing chemical avoidance and spending $100,000 or more each year.
Although sleeping well does help the body recuperate MCS can cause many other health issues including hormonal imbalances and sleep disorders so often it is quite difficult to fall asleep and stay asleep. When this happens the person is in a constant state of fatigue and symptoms are often intensified.

Why can’t you come over to visit or go to watch a movie with us?
In order to avoid further injuring myself I have to practice chemical avoidance and stay away from places with air fresheners, fragrances and pesticides. I also have to avoid going into sick buildings, places with mold and mildew and places with poor indoor air quality, and VOC’s. This means I can’t visit a place that has been painted recently even if a few weeks have passed since the painting was done. I can’t go into a new theater with new carpeting and furniture because these things emit VOCs (volatile organic compounds) which are detrimental to my health and can cause multiple reactions ranging from inability to focus or breathe properly to chronic fatigue and complete anaphylactic shock.

Can you carpool for the upcoming school year?
Due to my illness I cannot. I’m sorry for the inconvenience this may cause you, but my reaction to chemicals result in severe health issues and I do not feel comfortable driving children, never mind myself while impaired. Some people with MCS after having a severe reaction and blacking out have driven off the road. People with MCS see this type of reaction as bad as, or worse than drunken driving so I refuse to do it.

What are doctors saying about MCS? Do any scientific studies exist?
Canadian doctor John Molot See here, here and here

American doctor Ann McCampbell See here and here

American doctor Lisa Nagy See here and here

American doctor William J Rea See here here and here

Indian scientist and engineer See here

Scientific peer reviewed studies from around the world click here

Español – Information in Spanish please click here

 

Is there a resource that connects people with MCS around the globe?
Yes. This map helps people find other people in their area with MCS. It also raises awareness showing the global scale of this disease. The information on it can be as anonymous as you like, you choose what is shown. Any communication between members is totally private and secure. Many listings simply have “Anonymous” as the name, and maybe how many years the person has had MCS, if they choose to share that.

Aren’t fragrance-free and unscented items safe?
Not always. In some cases when a product says “fragrance free” it can mean that it is free from chemical compounds that make up a fragrance or many fragrances where as a scent free product can mean that it contains additional chemicals to mask the fragrance found in the product. However Dr. Anne C. Steinemann states this so precaution is warranted at all times.
“Products called “fragrance-free” and “unscented” are not necessarily non-toxic. Also, even if a product does not contain a fragrance, it could still contain chemicals that are classified as toxic or hazardous. Further, a “fragrance-free” or “unscented” product can nonetheless be a fragranced product with the addition of a “masking fragrance” to cover the scent.”  A helpful tip is to purchase products with just a few clean ingredients and make sure that none of those ingredients are “Fragrance” “Essence” “Aroma” or “Parfum”. The Environmental Working Group says this: “The word “fragrance” or “parfum” on the product label represents an undisclosed mixture of various scent chemicals and ingredients used as fragrance dispersants such as diethyl phthalate. Fragrance mixes have been associated with allergies, dermatitis, respiratory distress and potential effects on the reproductive system.

Why would our government allow the sale of perfumes, fabric softener, household cleaning items, paint, air fresheners and other scented products if they are bad for our health?  Dr. Anne C. Steinemann says this “Fragranced consumer products—such as air fresheners, laundry supplies, personal care products, and cleaners—contain chemicals that are not disclosed to the public.
No law in the U.S. requires disclosure of all chemical ingredients in a consumer product.
No law in the U.S. requires disclosure of any ingredients in a chemical mixture called fragrance.”  The Environmental Working Group says this
“FDA lacks the authority to require manufacturers to test cosmetics for safety, including fragranced products, before they are sold to consumers. As a result, people using perfume, cologne, body spray and other scented cosmetics like lotion and aftershave are unknowingly exposed to chemicals that may increase their risk for certain health problems.”

But my products are all natural. You cannot react to something natural right?
In the U.S. any company can make a cosmetic product and label it as safe, non-toxic, all natural and even say that it is organic.
Our government has not set up any laws yet which require disclosure of all the chemical ingredients in a consumer product.
In addition to this, there are no laws in the U.S. that require disclosure of the ingredients in any given fragrance. This means you can purchase an all-natural shampoo and if it says the word “fragrance” in the list of ingredients you have no clue on what chemicals were added to the product in the manufacturing process. These chemicals can be chemicals that have been banned and known to cause cancer, reproductive issues, neurological damage etc. yet they are allowed. For more information on this please click here.

Can exposure to toxic mold and other airborne contaminants cause MCS and related problems? What are some of the things that can lead to chemical sensitives and MCS?
Yes. Research has shown that exposure to toxic mold and other biotoxins at home or in the workplace can lead to a diagnosis of MCS, fibromyalgia, CFS and other serious illnesses. This topic is discussed in detail in this interview by world renown toxicologist Jack Thrasher PH.D and in this video by a doctor who was made very sick after being exposed to mold in a home she purchased. Click here and here to see polls conducted on this subject.
Click here to find out how mold and mycotoxins affect the human body.
Click here and here for more information on toxic mold.
Exposure to pesticides, VOCs in furniture and cosmetics, airline jet fuel, factory chemicals, a new car, construction materials can all lead to MCS.

How can I (a non-MCS person) make my home MCS-friendly?
Please look at these helpful tips on how to rid your home and environment of chemicals and fragrances. Please also check out this list of products and these tips.

Please visit often as this page is updated on a monthly basis. There are over 50 more questions and answers that will be added in the coming weeks, months. Please note that questions are answered as an example of what you could say to someone asking questions and that the information provided is not medical advice nor does it reflect the any specific person or case. 

Thank you for visiting this page and learning about MCS and other Environmental Diseases. If you have found this information useful and this page has helped you in any way please consider making a tax deductible donation online via Helping Hands Ministries for my ongoing medical treatment and recovery by clicking here.