MCS/ES

MCS

 Multiple Chemical Sensitivity aka Multiple Chemical Sensitivities, Chemical Sensitivity/ies, Chemical Injury, TILT, Sick Building Syndrome, etc.

1999 Consensus Definition Criteria:

1. MCS is a chronic condition.
2. Symptoms recur reproducibly.
3. Symptoms recur in response to low levels of chemical exposure.
4. Symptoms occur when exposed to multiple unrelated chemicals.
5. Symptoms improve or resolve when trigger chemicals (incitants) are removed.
6. Multiple organ systems are affected.

Multiple Chemical Sensitivity: a 1999 Consensus.
Archives of Environmental Health. 54: No 3, May/June 1999; 147-149.

Additional Symptoms Distinguishing MCS Cases from Controls:
-having a stronger sense of smell than others
-difficulty concentrating
-feeling dull or groggy
-feeling spacey

McKeown-Eyssen GE, Baines CJ, Marshall LM, Jazmaji V, Sokoloff ER. Multiple chemical sensitivity: discriminant validity of case definitions. Archives of Environmental Health. 2001; 56(5): 406-412.

A pattern consistent with these diagnostic criteria is also reported for sensitivities (sometimes called EHS) to electromagnetic phenomena (EMR/EMF).

Environmental Sensitivities

“The term “environmental sensitivities” describes a variety of reactions to chemicals, electromagnetic radiation and other environmental factors at exposure levels commonly tolerated by many people. These phenomena are not yet fully understood. In contrast, some toxic environmental agents such as metals (e.g. lead, mercury), rock dusts (e.g. asbestos, silica), chemicals (e.g. hydrogen sulphide, dioxin) and biological agents (e.g. snake or scorpion venom) are better understood as to their ill effects on people.
“Environmental sensitivities” does not describe a single, simple condition with a universal cause. Environmentally sensitive individuals link their symptoms to aspects of their environment such as being in a particular place or being exposed to one or more factors such as chemicals, biological materials or electromagnetic phenomena.”

“Sensitivities may be initiated by a range of environmental factors and once the condition is initiated, reactions may be triggered by a broadening array of incitants. Environmental sensitivities may affect every system in the body, so multiple symptoms are possible, with variation among individuals. Neurological symptoms are almost universal. Common incitants are summarised in Table 6 and symptoms are summarised in Table 7. The impact of environmental sensitivities on workers’ performance may range from mild (e.g. habituation to chronic exposures such that performance may be sub-optimal, although not “abnormal”) to severe impairment such that work is impossible. 

Environmental Sensitivities – Medical Perspective  Sears 2007

see: MCS/ES Symptoms and Environmental Incitants

This video is worth watching

Dr. L. Christine Oliver is an Associate Professor of Clinical Medicine at Harvard Medical School and Co-Director of Occupational and Environmental Medicine at Massachusetts General Hospital. She speaks for about 15 minutes, then Alison Johnson reads from her book important book Amputated Lives.

 ♦

MCS Is a Reaction to Chemicals, Not Odors

“… It should be clear … that chemicals acting in MCS are not acting on the classic olfactory receptors (15,16), but rather are acting as toxicants.  This is opposite many published but undocumented claims that MCS is a response to odors.  There is additional evidence arguing against the view that MCS is a reaction to odors.  MCS sufferers who are acosmic, having no sense of smell, people who have intense nasal congestion and people whose nasal epithelia have been blocked off with nose clips can all be highly chemically sensitive (1,4).  This does not necessarily mean that MCS never impacts the olfactory system.  It simply  means that MCS is not primarily an olfactory response.”
~ Martin L. Pall
Professor Emeritus of Biochemistry and Basic Medical Sciences, Washington State University and Research Director of the Tenth Paradigm Research Group 

From: http://thetenthparadigm.org/mcs09.htm

see also: Public Health: General and Applied Toxicology and Multiple Chemical Sensitivities

Categorical guidelines for levels of disability

Mild
Able to work.
Frequently has many symptoms, some of vague nature.
May find petrochemicals and other environmental exposures such as auto exhausts cigarette smoke, and cleaning materials to be unpleasant or produce uncomfortable feelings, but able to work effectively.

Moderate
Able to work at home or with controlled environment at work place.
May have to use gas mask or charcoal mask and air purifier filter system.
Exposure to inciting agents causes acute symptoms which may alter functional capacity (severe headache, muscle pain, poor concentration, memory loss, etc.).
May have to change job or work conditions if environmental pollution is severe enough.

Severe
Unable to work effectively, even with environmental control, using avoidance, masks or filters.
On some days, may be able to work 30 to 60 minute shifts several times a day if in a very controlled environment. Reacts to chemicals such as insecticide, phenols, chlorine, formaldehyde, perfume, petro-chemicals, etc.
Has severe mental and physical symptoms which may or may not clear.
Public exposures such as church, post office, movie or shopping are not tolerated.
Visitors to home must clean up significantly.
Can usually care for self in a home situation.
May be able to drive if automobile made free of inciting agents, sealed, and has charcoal air filters.
Has difficulty with other family members or guests in home who bring in aggravating exposures on clothing, printed material, hair, etc.
Adversely reacts to many medications.
May have to move if existing home has uncontrollable outdoor pollution, is new and has not outgassed, or has other significant problems of mold, flooring, or other incitants.
Requires a clean room, carpet-free, cleared of inciting agents, special heating and air filtering.
Must wear natural fiber clothing specially laundered.

Disabled
Requires assistance to function in rigidly controlled home environment.
Reactive symptoms have spread to virtually all environmental agents including chemicals, foods, pollens, and molds.
Has mental and physical symptoms that are incapacitating, although frequently not structurally described.
Total and very restrictive environmental control required in home and vehicle.
Cannot tolerate family or help who have outside exposures with even small contamination of clothing or hair with odors.
Visitors usually are too toxic to be tolerated indoors.
Usually requires several moves to different areas of the country to find tolerable climate which is also chemical free.
May require unusual and extensive measures to make a tolerable clean refuge area to sleep in.
Has difficulties with virtually everything in environment (universal reactor).

From “E.I. Disability Classification”, l987, The Human Ecologist, No. 35, P. 13. via “The Phenomenology of Multiple Chemical Sensitivity at Four Levels of Severity”, Pamela Reed Gibson, James Madison University

Please see my post

Severe MCS/ES… What Does It Mean?

to learn much more about the impacts

sensitive to pollution 4

Getting diagnosed

Diagnosis can unfortunately take far too long, since so few doctors are trained to recognize the causes and effects of environmental exposures (including modern molds), and chemical or electromagnetic radiation influences on the human brain and body.

In some ways, we have been entering new territories, but in other ways, this is not an acceptable excuse because enough IS already known (has been for decades), and if people were diagnosed early, using a precautionary approach, so much unnecessary suffering (and worsening of the conditions) could be prevented. Mis-diagnosis has also caused much harm, often by prescribing pharmaceutical treatments that can actually make things much worse, especially for people who have adverse reactions to synthetics.

Sadly, there are vested interests doing their best (spending millions if not billions of dollars creating doubts, 1 and 2) preventing MCS/ES and other conditions from being properly recognized and researched. Like autism… which has so much in common with MCS/ES that I and others are sure that a significant number of people on the spectrum actually have MCS/ES and not autism, depending on what time of development or life the chemical or radiation  injuries have occurred.

People with Fibromyalgia are also not made aware of the probable toxic origins of the condition and are most often given synthetic pain medications instead of information and prescriptions of how to detox their lives. For people with MCS/ES who also have FM, detoxing life of petro-chemical products and materials usually leads to greatly reduced, if not complete elimination of pain.

Tragically, too many of our modern health problems are also being traced back to everyday chemical exposures.

Finding a doctor who has some understanding of environmentally caused illnesses is the 1st step (some resources are listed below). Getting the diagnosis is useful on several fronts. One is understanding what is happening and what can be done about it according to what understanding and resources are available, another is to become an official statistic of our growing numbers (aren’t we lucky), and yet another is that in order to receive accommodations at work or elsewhere, we usually have to have the dx in writing.

Something else to consider is that there is strength in numbers. As more of us become chemically injured and disablingly “sensitive” to pollution and toxic products and materials, there are economic reasons to meet our needs by manufacturing and marketing safer products and materials (so much  comes down to making $$$ these days). Gradually, the understanding is emerging that developing safer products and materials is good for everyone,  pregnant women and vulnerable, developing children included! In fact, unless we start paying some serious attention to how things are made (and the environmental pollution and destruction that they cause) we risk destroying the planet we ALL depend on for life.

In diagnosing MCS/ES (and other ‘environmentally’ caused conditions), usually a process of elimination is used (to eliminate other causes and conditions), and an exposure history is documented, using questionnaires similar to the ones below.

Some doctors also use various traditional and non-traditional methods of testing to determine which actual substances are causing problems, and these tests can be expensive, although they might be worth it if you can afford them and are healthy enough to subject yourself to the testing procedures. There are some tests that work with energy instead of substances, and if the practitioners are well trained, they can be quite accurate and helpful as well as less painful to endure! As with everything, it’s usually good to follow your intuition as to what kinds of testing and treatment you are willing and able to go through.

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From the Ontario College of Family Physicians
Environmental Health Publications and Tools

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Taking An Exposure History
These sheets are designed as tools for taking patients history with respect to exposure to environmental contaminants. Dr. Lynn Marshall 

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Case Criteria Checklists (CFS/ME, FM, MCS/ES)

ACTIVITY LOG and FUNCTIONAL CAPACITY SCALE
.

From Dr Claudia Miller:

The Quick Environmental Exposure and Sensitivity Inventory (QEESI)
A screening tool for multiple chemical intolerance. Coupled with an exposure history, it is useful in diagnosing TILT (Toxicant-induced Loss of Tolerance).

American Academy of Environmental Medicine Definition of Chemical Sensitivities, with list of specialists and more at the website

Chemical Injury.Net Dr Grace Ziem’s website with articles, lists, and links covering the prevention, evaluation, and treatment of chemical sensitivity and related conditions

Environmental Health Center-Dallas The mission of the Environmental Health Center – Dallas is to provide superior medical care and education with a special emphasis on the effects of environmental factors on health and disease.

Environmental Health Clinic Toronto

Complex Chronic Disease Program at BC Women’s Hospital

Diagnosing Electromagnetic Hypersensitivity

ICD Codes

The International Classification of Diseases (ICD) is the standard diagnostic tool for epidemiology, health management and clinical purposes.

While MCS/ES aren’t in here as such, Hypersensitivity is (so no doctor can tell you that it doesn’t exist), and many of the other common symptoms are also listed. Below are some examples of the categories, more details can be explored via the link below.

International Statistical Classification of Diseases and Related Health Problems 10th Revision (ICD-10) Version for 2010

http://apps.who.int/classifications/icd10/browse/2010/en

Chapter IV
Endocrine, nutritional and metabolic diseases
(E00-E90)

Chapter VI
Diseases of the nervous system
(G00-G99)

Chapter X
Diseases of the respiratory system
(J00-J99)

Chapter XIX
Injury, poisoning and certain other consequences of external causes
(S00-T98)

Poisoning by drugs, medicaments and biological substances
(T36-T50)
Toxic effects of substances chiefly nonmedicinal as to source
(T51-T65)
Other and unspecified effects of external causes
(T66-T78)

T78.4 Allergy, unspecified
Allergic reaction NOS
Hypersensitivity NOS
Idiosyncracy NOS

T78.8 Other adverse effects, not elsewhere classified
T78.9 Adverse effect, unspecified

More info here (and in this blog’s sidebar):

MCS Medical and http://www.mcscanadian.org/journals_med.html

MCS Articles: http://www.mcscanadian.org/articles_mcs.html

Treatment Options

seriously sensitive to pollution

“The cornerstone of treatment for individuals with MCS in my opinion is avoidance of
exposure to the extent that that is possible. It’s very difficult often, in fact, it’s impossible to achieve complete avoidance of exposure, but with careful planning individuals are able to reorganize their activities of daily living so that they can decrease direct contact with chemicals.”
~ L. Christine Oliver, M.D., M.P.H., M.S., Associate Professor of Clinical Medicine
Harvard Medical School, Co-Director of Occupational and Environmental Medicine, Massachusetts General Hospital

“Because of the complex nature of this condition, it is important to keep in mind the concept of total load or the total environment. This involves the complex interplay of genetic endowment, nutritional status, emotional stress, and exposure to foods, chemicals, microbes, inhalants, and even electromagnetic fields. How health is expressed is obviously a function of the cumulative effect of these factors on the patient.

Treatment options for MCS center around education, avoidance of allergens (including those in air, food, water), environmental clean-up procedures, rotational diets, enhancement of nutritional status, immunotherapy, immune stimulation, detoxification where appropriate, and addressing the patient’s social and emotional health. In addition, the emerging awareness remains that electromagnetic fields may play a significant role in certain situations (Fitzgerald, 1990). It is vital to establish a relationship whereby patients feel that physicians take their complaints (though perhaps myriad and long standing) seriously and in an atmosphere of mutual respect and trust. Within such a context, patients will more readily accept education about things they potentially can do to help themselves.”

Continued at: http://www.aehf.com/articles/treatment_options_mcs.html

Gerald H. Ross, MD, CCFP, DIBEM, FAAEM
Environmental Health Center-Dallas, Dallas, TX

Therapy (Suggested Supplements)
Martin L. Pall
http://thetenthparadigm.org/therapy.htm

Safe Housing

Chemical Free Clothing

Pamela Reed Gibson, Amy Nicole-Marie Elms, Lisa Ann Ruding, James Madison University

Perceived treatment efficacy for conventional and alternative therapies reported by persons with multiple chemical sensitivity.
Abstract and link to PDF
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1241653/

Mind and Brain

We can also learn how not to let this happen:

It doesn't have to be like this!

It doesn’t have to be like this!

That habit is not exclusive to people with MCS/ES or any chronic illness, injury or disability!

When we are dealing with often disabling health effects caused by materials made, sold, found, used and “consumed” in our everyday environments, not to mention massively advertised on tv and elsewhere, it can be quite challenging to change our way of life and habits in order to respect our own and community needs when they seem to defy the norms we have been taught to follow. It becomes too easy to make up stories in our minds (prompted by images from media) that discourage us from doing anything differently, even if it is ultimately healthier for us and by extension our communities and  the planet we depend on for clean air, safe water, healthy food, in other words, for the basics of life.

We are not taught how to examine the life cycle of the things we buy, use, consume and discard. We are not taught about cause and effect. We are not taught how to examine and process “controversy” even when our own reality is showing us that things are not the way we have been led to believe they are. Instead, more often than not, we are taught to be afraid of change, and to fear those who are different, and, as a result, making the changes we  need to make can become even more challenging when we don’t want to be seen or thought of as being one of the “different ones”.  There’s that old saying about  “the devil we know…”

Brain Retraining

Some day I will share in more detail some of my thoughts about the brain retraining programs that are apparently working wonders for some people who have MCS/ES. I am currently not up to discussing this in a way that it deserves to be discussed, so my apologies if what I write here is a bit simplistic or lacking in context.

Briefly, I think the programs seem very valuable for the people who actually do have limbic system and or amygdala impairments, which can be manifest before MCS/ES, or after, triggered by the lack of timely and correct diagnosis, industry and societal derision, worsening health, the lack of understanding or needed accommodations, ensuing poverty and isolation, possible homelessness, and all the other circumstances people with MCS/ES experience, often all at once and without much, if any support. The limbic system can also be the actual target of chemical exposures and injury (perhaps by endocrine disruptors) for some people, just like the respiratory system is for others.

The brain retraining (and mind training) tools that I am aware of would be tools that everyone in society might benefit from. They are not a cure for all the other injury components of MCS/ES (I hope I am wording this right), but they can successfully alleviate some co-mordid conditions for some people, and prevent added grief for others. Mindfulness and awareness meditation techniques (some are included in the programs) actually benefit everyone, with or without a chronic illness, injury, or disability.

From Planet Thrive:

Dear Dr. Rea,
Are you aware of the brain retraining programs out there, such as the Gupta Amygdala Retraining™ Program and the Dynamic Neural Retraining System™ (DNRS) developed by Annie Hopper, that claim to address MCS, CFS, FMS, and related conditions? They say that these illnesses are primarily brain injuries – limbic system disorders – that can be healed using neurolinguistic programming. There are reports of full recovery and also a lot of significant symptom reduction. Are you familiar with these treatments and how do you feel about them given your knowledge of the biology of these illnesses?

Dr. Rea’s response:
Yes, I am familiar with them! I have never seen one of these work without the reduction of the total body pollutant load and replacement of nutrient deficiency.
William J. Rea, M.D., F.A.C.S., F.A.A.E.M.
From: http://planetthrive.com/2013/02/dr-reas-thoughts-on-mcs-brain-retraining-programs/

More:

Limbic Retraining

Multiple Chemical Sensitivity My Thoughts blog

The Places That Scare you: A Guide to Fearlessness in Difficult Times

Finding a Way to Stay Sane in a Crazy World

Mindfulness meditation may provide relief from chronic inflammation
http://www.news.wisc.edu/releases/17738

“Rosenkranz emphasizes that the mindfulness-based approach is not a magic bullet.” “This is not a cure-all, but our study does show that there are specific ways that mindfulness can be beneficial, and that there are specific people who may be more likely to benefit from this approach than other interventions.”

That is the kind of research and honesty that is necessary for the brain retraining programs.

How Meditation Works
Mindfulness meditation is having a moment in the West, and with it some compelling reasons to understand and try it.
http://www.theatlantic.com/health/archive/2013/06/how-meditation-works/277275/

Support

MCS A survival Guide by Pamela Reed Gibson

LIVING WITH ELECTROHYPERSENSITIVITY A Survival Guide by: Susan Parsons

Lyme Disease U.S., International and Canada

Safe Canary Nest: Extensive Resource list and Helpful Hints

Support Groups

Human Rights and Accommodations

Accessibility, Human Rights and MCS/ES

Canadian Human Rights Documents Archived

Fragrance-Free and Healthy Schools

Accessible Customer Service – What to do When A Store is Too Polluted to Enter

Tax Time: Medical and Disability-Related Expenses

Canadian Recognition of MCS/ES (Multiple Chemical Sensitivities/Environmental Sensitivities)

MCS/ES Housing Resources From CERA

Undue hardship
“assessing whether an accommodation would cause undue hardship”
http://www.ohrc.on.ca/en/policy-and-guidelines-disability-and-duty-accommodate/5-undue-hardship

* “Delegitimizing those with ES-MCS, who may be warning us all of the need for toxics reduction, also tends to impede development of practical, precautionary, potentially preventive and cost-saving public health strategies.”

http://www.womenscollegehospital.ca/assets/legacy/wch/pdfs/ESMCSStatusReportJune22011.pdf

Developing MCS/ES is not necessarily a death sentence, especially when addressed early. It does become more difficult the longer one has been severely affected, but even then, with the right supports and accommodations, many people can become well enough to live full, rewarding lives, albeit sometimes differently than before.

As more people become seriously “sensitive” to pollution, there is hope that the necessary policy and societal changes can be made to ensure that eventually what is prioritized is the health and quality of life for all living beings, not just financial gains for a few while the planet and everyone on it disintegrate around us.

We live in a time of great changes, challenges and opportunities.

MCS/ES is a life changing condition. This is not necessarily a bad thing!

We can use what we learn to help make this world a safer, healthier place for everyone to enjoy!

9 responses to “MCS/ES

  1. Thank you Linda for bringing all this vital information together on one page. I plan to read it all (bit by bit) and make the best use posible of the resources as well as passing it on to others. Your generousity and effort to help others in awareness and being well informed is admirable especially taking into consideration your delicate health conditions. Your charitable work is a great help to us all.
    God bless you and cherish your precious soul Linda Sepp.
    LOTS OF LUV & A BIG HUG!!! (it won’t hurt cause it’s a “wish hug” or a telepathic hug. It’s one of the things I miss most and hate to have to give up!)

    • Thank you Therese,
      We are all in this together!
      Someday I might be well enough to research all the international resources and post those here too, but at least some of the links I do have are relevant globally and others will lead to some of the international groups.
      May you find and receive what you need!

  2. Linda, thank you so much for this information. This will be a huge help in trying to explain to relatives, friends and doctors who just don’t understand. I really appreciate all of your hard work. I know when we are all so sick with these problems it sometimes seems like we can never pass them on to enough people, but if each one of us can inform a couple of people we will make a difference. In about one week the HOA where I live is getting ready to resurface the driveways with hot asphalt paving and I am scared to death. Having to purchase new windows and an expensive air purifier to get thru this. We were exposed to tar in 2005 and that is one reason I am this sick. Your website has been so helpful, I found a great company to purchase the air purifier because of you. I wanted to pass this on to you and your readers, mild hyperbaric oxygen chambers are a big help and have kept me and my partner alive. Thank you so much for all your help. Best of luck with your health. Kay Passmore

    • Thank you Kay.

      I am trying to post as many resources here as I can, in hopes that people can learn how to prevent chemically induced illnesses and injuries from happening to themselves and their families, and once it’s too late for prevention, how to manage…

      Sorry that you are also having so many issues with toxic trespass in your own home. Asphalt (roadwork and roofing chemicals) almost killed me in 2007. I am still recovering from that and some other exposures I was subjected to.

      Did you see the links about asphalt and surfacing materials in my post about summer VOCs? I think (but don’t remember now – brain fog all summer because of the things mentioned in the post, none of which I have used myself) I included the one about the 2 different types of surfacing materials, one of which is being banned in many places now.

      Perhaps if you share that with your HOA, they can choose less toxic options. Perhaps introduce the concept that they may become liable for triggering health problems in the people they are supposed to be looking out for, OR ask them to sign a letter beforehand stating that the materials they plan on using are safe for all residents health 😉

  3. Hi Linda, Thank-you for all of the information you share. I have had lifelong, complex health challenges and recently remembered consulting with an Occupational therapist that specialized in Sensory Processing Disorder helped me 10 years ago. I have noticed a difference since starting to listen to the Vital Sounds Mozart 4 therapeutic CD she gave me and doing the infinity and beads on a string exercise again. I also changed my meditation technique using two words for 20 minutes timed.

    • Thanks for mentioning those. It’s wonderful when we find the right helpful tools for dealing with the different challenges we have!

      From doing some research and having discussions with people, it’s clear though that SPD and MCS/ES are two different things although the same person could have both. Some people are also Highly Sensitive People (I think that’s the term) and there are helpful strategies for living with that too.
      Just like MCS/ES and allergies are different but a person could have both, the tools we need to use will be different.

      I think as more people become injured from all the pollutants we are exposed to on a daily basis, and have a lack of nutrition due to high consumption of food-like products, we are starting to see a really wide variety of symptoms and health effects, some which may be more hardwired from prenatal or early childhood exposures, others from later chemical overloads.

      We are going to need to have a lot of tools and coping skills as “normal” becomes a thing of the past.

  4. Hi Linda – You reference Dr. William Rea in this post. I would love to consult at his clinic. http://www.ehcd.com/. I saw your post that you use homeopathy for dental work. Have you tried homeopathy for MCS?

    • When I had a friend who was studying to become a homeopathic Dr we did work on some of my MCS symptoms too and the remedies helped. My symptoms changed a lot over time, so we had to keep changing remedies. I would have loved to keep working with her but she moved several provinces away.

  5. Pingback: Are the Wrong People in Solitary Confinement? | Seriously "Sensitive" to Pollution

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