Els Valkenburg wrote the first Dutch book on multiple chemical sensitivity, a year later the book became available in the German language and now the English language edition is launched worldwide, also in libraries, schools and universities. Els is very proud that this project succeeded after years of hard work. All editions are adjusted to the specific area/market of that language.

Els: “My goal is to bring more understanding and acceptance about this environmental illness and spread the knowledge as far and as much as possible. I hope young people, supplied with the facts, will not end up like me.  Had I received this information 10 years ago, I would not have had to live the life of a recluse”.

Els hopes with her MCS book to  improve the situations of MCS patients. Not only their health and living situation, but also their relations with family and friends concerning understanding and respect. The book is also suitable for specialists and therapists, because it also has a scientific part and everything is underpinned with research and reports. Most books are written only from a scientific point of view or are written by patients only about their own experiences. This book is written based on both, from own experiences, those of others and on throughout (scientific) research, that is why it has 7 Parts:

• Part I: What Is MCS? (General; Treatment and Strategies for Relief; Scientific etc.)
• Part II: The Personal Story
• Part III: The Voices of Others
• Part IV: The ABCs of MCS: Tips and Advice in Alphabetical Order
• Part V: Films, Books, Art, Music and Spiritual Nourishment
• Part VI: Further Resources (Articles; Websites)
• Part VII: MCS Handout

Understanding Multiple Chemical Sensitivity

Causes, Effects, Personal Experiences and Resources

Els Valkenburg, ISBN: 978-0-7864-4443-4 | 224 pages

More information on the book: www.the-abc-of-mcs.com

Publisher: www.mcfarlandpub.com

Studies show chemicals act as toxicants in causing cases of Multiple Chemical Sensitivity; genes that metabolize these chemicals into other forms influence, therefore, susceptibility to getting MCS.

Guest post at Canary Report by Martin L. Pall, Professor Emeritus of Biochemistry and Basic Medical Sciences, Washington State University and Research Director, the Tenth Paradigm Research Group.

Martin Pall: I have emailed the following as an open letter to the Denver Post in response to the article on multiple chemical sensitivity (MCS) that was published this weekend. I think the published article was generally a step forward in terms of public understanding of MCS. But the article left out a number of important things and this letter is an attempt to deal with some of those. I have asked them to consider publishing this as an Op-Ed piece, but wanted to make it available regardless of whether or not they opt to do so.

Thank you for writing this article on multiple chemical sensitivity (MCS), the term that is used in most of the scientific literature on this disease. There are vast numbers of people who have been afflicted in this epidemic of chemical sensitivity and I am sure that they are all thanking you. I also thank you for mentioning a bit of my work on this disease.

Some of your readers have already made quite a number of important points about MCS so I can focus here on just a few remaining issues. How do chemicals act in MCS? We know now that the seven classes of chemicals implicated in MCS all produce a common toxic response in the body, excessive activity of a receptor in the body called the NMDA receptor. So even though we have a vast array of such chemicals, we know how they can produce similar responses in people.

There is compelling genetic evidence that these chemicals act as toxic agents (toxicants) in the body. Four such studies have been published by three research groups in three countries. Collectively they implicate six genes as influencing susceptibility to MCS, such that people carrying some forms of each of these genes are more susceptible to becoming chemically sensitive than are people carrying other forms of the same genes. All of these genes control the activity of enzymes that metabolize these chemicals into other forms. Most of these studies show a high level of what is called statistical significance. In the Schnakenberg and colleagues studies, the chances of getting their results by chance are less than one in a million billion. So obviously, these are not chance results. What these studies show is that chemicals are acting as toxicants in causing cases of MCS and that genes that metabolize these chemicals into other forms influence, therefore, susceptibility to getting MCS. These studies, then, provide compelling evidence that cases of MCS are caused by toxic chemical exposure. Clearly they also show that MCS is a real disease, otherwise one would not be able to do such studies clearly linking the chance of becoming ill with MCS to the action of chemicals acting as toxicants.

Dr. Herman Staudenmayer has, for some 20 years claimed just the opposite. He claims that MCS is psychogenic, caused by psychological responses and according to him, is not a toxicological phenomenon. He has maintained this claim by ignoring contrary data wherever it occurs. He has ignored all of the evidence that chemicals implicated in MCS produce a common response in the body; he has ignored the roughly two dozen studies showing that MCS patients show objectively measurable responses to low level chemical exposures, responses that differ from those of normals. He has ignored all of the evidence implicating excessive NMDA activity in MCS; he has ignored the dozens of animal model studies on MCS; he has ignored over 50 studies that show that cases of MCS typically occur following chemical exposures; he has ignored the various other measurable physiological changes reported to occur in MCS. This has all been documented in my book “Explaining – Unexplained Illnesses” and in my article on the toxicology of MCS that is coming out next month in a prestigious reference work for professional toxicologists “General and Applied Toxicology, 3rd Edition”. It is also documented on the MCS web page of my web site: The Tenth Paradigm

Clearly you cannot do science by simply ignoring the existence of vast arrays of contrary data. However, Staudenmayer provides us with a couple of other tests of his views in his book, predictions that allow us to test his theory. He predicts that psychological factors are necessary and sufficient to account for the properties of MCS. This, of course, is contradicted by all of the evidence I referred to earlier. Therefore we should reject his hypothesis based on his own prediction. He provides a second prediction as well (the exact quotes from his book on these predictions are provided on my MCS web page). He predicts that the variation of susceptibility to MCS is not caused by variable responses to toxic chemicals. Clearly the genetic studies discussed above have shown that this is false and therefore, his hypothesis should be rejected for that reason, as well.

It is clear, from the above, that Staudenmayer’s construct was basically a house of cards. Now that it has collapsed, where does that leave us?

Firstly it leaves us with reversing the errors of the past. We need to start treating MCS sufferers as victims of unsafe chemical exposure. Many of them have previously been used, abused and discarded. If we live in a society where people are not disposable items we need to “do unto others as you would have others do unto you.”

We obviously need to start regulating chemical usage much more carefully, to avoid initiating new cases of MCS. It is imperative to develop tests for chemical activity in MCS, just as we have developed tests for chemical activity as carcinogens. Then we need to use these tests to effectively regulate the use of toxic chemicals.

We need to develop specific biomarker tests for MCS, tests that can be used to objectively confirm diagnoses initially based on subjective symptoms. I think we already have several very promising approaches to doing this in the scientific literature and a minimal amount of further study may be all that is needed to develop such tests.

We need to confirm that chemical avoidance is key to therapy and to develop other therapeutic approaches to work along with avoidance. The environmental medicine physicians and others have already made very important progress in this direction and I am optimistic that further progress can be made quickly. Such progress is relevant not only to the treatment of MCS patients but also to the treatment of clearly related diseases including chronic fatigue syndrome/mylagic encephalomyelitis and fibromyalgia. All of these diseases are caused by what I have called the NO/ONOO- cycle and the way to treat them, in my judgment, is to lower the activity of that vicious cycle mechanism.

Martin L. Pall

Professor Emeritus of Biochemistry and Basic Medical Sciences, Washington State University and Research Director, the Tenth Paradigm Research Group

Reprinted with permission from the author. Dr. Pall cautions the reader that he is a PhD, not an MD, and none of this should be viewed as medical advice.

• Original Article posted by Canary Report Thank you for the permission to reprint Susie!
• Link to Martin Pall’s website: The Tenth Paradigm
• Link to an extended excerpt from Palls book Explaining “Unexplained Illnesses.”

A group of chemists from the University of Santiago de Compostela (USC) has developed a method to quantify the fragrance allergens found in baby bathwater. The researchers have analysed real samples and detected up to 15 allergen compounds in cosmetics and personal hygiene products. 

A team of scientists from the Department of Analytical Chemistry, Nutrition and Bromatology at the USC has developed a method to detect and quantify the 15 most common fragrance allergens included in soap, gel, cologne and other personal hygiene products.   

“Applying the method to eight real samples obtained from the daily baths of a series of babies aged between six months and two years old, we discovered the presence of all the compounds under study in at least one of the samples,” co-author of the study published this month in Analytical and Bioanalytical Chemistry, María Llompart, explained to SINC. 

The scientists found at least six of the 15 compounds in all the samples. In some cases, concentrations were “extremely high”, exceeding 100ppm (parts per million = nanograms/millilitre). Some of the substances that appeared were benzyl salicylate, linalol, coumarin and hydroxycitronellal. 

“The presence and levels of these chemical agents in bathwater should be cause for concern,” Llompart said, “bearing in mind that babies spend up to 15 minutes or more a day playing in the bath and that they can absorb these and other chemicals not only through their skin, but also by inhalation and often ingestion, intentional or not.”

New Method to Detect Fragrances

Allergens were able to be detected due to the high level of sensitivity of the method, which for the first time applies the Solid-Phase Micro Extraction (SPME) technique to determining the ingredients of cosmetics and child hygiene products. This technique makes it possible to concentrate and isolate chemical components from a sample by absorbing them into fibres with a certain coating. 

The researchers have also employed gas chromatography to separate compounds and mass spectrometry to identify and measure the abundance of each of the fragrances. 

European regulations stipulate that the presence of such substances should be indicated on the label of the product when levels exceed a certain limit (0.1 or 0.01%, depending on the type of compound), but some associations believe these limits are excessively tolerant, particularly where child hygiene and baby and child care products are concerned. 

References: J. Pablo Lamas, Lucia Sánchez-Prado, Carmen Garcia-Jares y María Llompart. “Solid-phase microextraction gas chromatography-mass spectrometry determination of fragrance allergens in baby bathwater”. Analytical and Bioanalytical Chemistry 394 (5): 1399-1411, julio de 2009.

In June, the online magazine Delirio published an article about Multiple Chemical Sensitivity (MCS), in which Eva Caballé, the brilliant Spanish MCS blogger at NO FUN, presented herself naked in front of the camera and wrote about “The Naked Truth of MCS.”

For other countries, it often looks like chemically sensitive patients in Germany get more medical help than anywhere else since MCS is recognized as a physical disease in our country. It’s true that MCS is registered as a physical disease and has the ICD-10 code T78.4, which lists MCS in the chapter on injuries and intoxicants. MCS is recognized as a physical disability as well (26.14). But the reality for people with Chemical Sensitivity is hard and bitter. Many are fighting at court to get their disability recognized, but even when having numerous medical reports confirming their condition, they usually loose. Because, like in other countries, sickness from chemicals and modern living is not truly recognized but rather swept under the carpet even though we exist and suffer every day.

Further, in Germany, people with MCS are neglected by society. There are people who are homeless because of MCS. Many have lost their jobs or houses. Many are neglected by their relatives because family members do not understand the disease and are not willing to change habits for their sick loved one. Further still, the chemically sensitive people here in Germany are systematically declared mentally ill or having only psychosomatic symptoms.

Medical Assistance focused on Chemical Sensitivity doesn’t exist in Germany. We still have no adequate clinic with special environmentally controlled rooms where the very sick can be treated. Most environmental doctors don’t diagnose MCS because they fear harassment.

MCS is recognized as a physical disability in Germany but the “unseen” barriers are still everywhere. In public buildings you can still find air fresheners in nearly all bathrooms, harsh chemical cleaners all over the building, and perfumed employees everywhere, so none of us can go there without developing severe physical symptoms. Children who are severely chemically sensitive have no chance to visit a public school or university. We have no such thing as scent-free policies in workplaces, schools, public buildings or departments.

We people with Chemical Sensitivity here in Germany can, like people from many other countries all over the world, shake hands with the Spanish MCS sufferers, because we, too, are left naked and without any help. Our chemically sensitive people cry for help without any response each day, too.

The naked Truth about MCS

from Eva Caballé

We are born naked, they give us cologne, perfumed nappies, clothes washed with softeners, creams with all kinds of possible aromas, and they drive us in plastic stroller while we breathe nice polluted air.

We grow up and they make us believe that we can achieve anything we want, that we can write our future, that the happiness is based in buy everything and the state is here to protect and watch over us, although I had my doubts.

One day, you wake up and nothing has sense. You switch on the table lamp and your eyes get burnt; you open the window and perceive new smells that don’t let you breathe. You turn on the radio and the music booms in your head, so much that you fear it will explode. And you don’t have a hangover. It’s worse. It’s been called Multiple Chemical Sensitivity (MCS) and has come to stay. Your body has said “enough”, has been broken and starts rejecting everything that they told you was essential for your happiness. Your life has taken an unexpected turn, your mind changes, your future vanishes, you don’t have physical nor mental energy. The disease forces you to live your life behind a mask and have been in isolation from the outside world.

Multiple Chemical Sensitivity is not strange, nor a minority. It affects to the 5% of the population. It’s a chronic disease, not psychological, which causes symptoms as a response to a minimal exposure to usual and unnecessary chemical products like bleach, air fresheners, perfumes, etc. We live locked in our houses but it’s not necessary to go out to have a crisis. Your neighbour’s cloths airing outside suffocate you, make you feel sick until you loose consciousness, thanks to the wonderful toxic softeners.

The World Health Organization (WHO) don’t recognize MCS as a disease yet, in spite of having in their possession innumerable studies that prove its existence and the European Parliament includes it inside the growing number of diseases related to environmental factors. The reason is the pressure that the chemical and pharmaceutical industry exerts for not recognize it, because MCS is caused by the chemical products that we use to consume. The economical interests in front of our health. In countries which this problem is recognized, like Germany, medical assistance and financial aids towards it are provided, and in some other countries it is being considered at the moment.

And what’s the situation in Spain? We don’t exist to our paternal government. On top of the drama of suffering MCS, they abandon us, without medical assistance and without any right to a disability benefit when we can’t work. They leave us naked and unprotected, like second class citizens, because we’re the evidence that the current model of society has failed, although nobody wants to see it or to take measures to sort it out.

They too steal any hopes we might have of feeling better. Pharmacists finance research only when they can obtain any profit. As a result of this, minority diseases don’t get research, not even MCS, which affect to the 5% of the population. The chemical and pharmaceutical industry knows that we get sick because we’re intoxicated and the key is not any medicine that will make them rich. The key is to change the model of this society, decreasing the big quantity of chemical products to which we’re exposed each day. Obviously, this can’t be known and they try to deny that MCS exists, because their economical interests would be at stake.

The chemical industry, supported by the government, doesn’t have the right to subjugate the population to the involuntary exposure to chemical substances, whose effects are often unknown. When we develop MCS, we must throw away perfumes, softeners, plastics, etc., to be naked again. We born again, but it’s a new life that we don’t choose. We know by the researches that have been done that MCS has genetic components, so not anybody could develop it, although this doesn’t save you to accumulate toxics until you have a cancer or any other disease related to environmental factors.

Those who suffer MCS want the disease to be recognized; we want to have the same rights as the other chronically ill people; we want society to know the risk they are under; we want the government to protect its citizens and prevent them from getting sick at no cost for them.

We don’t want anybody feeling naked again as a result of suffering MCS.

Photos and text published with author’s permission. Thank you very much Eva!

Foreword: Silvia K. Müller, CSN – Chemical Sensitivity Network, June 2009

Original Article “The naked Truth about MCS”

Canary Report: “The naked Truth about MCS”

Document and English translation – claissification of MCS as physical disease in Germany

‘No Family History’ author makes compelling case for environmental link to breast cancer and urges women, advocates, and policymakers to focus on prevention.   

PHILADELPHIA – Has the key to reducing breast cancer gotten lost in the race for a cure? A new book, No Family History, presents compelling evidence that exposure to everyday products such as cosmetics and toiletries, hormones in food, household cleaners and pesticides is behind the dramatic increase in breast cancer and argues that the solution is simple: prevention.  

“Every three minutes, one woman in the United States is diagnosed with breast cancer. Yet, most women with breast cancer defy most or all of the risk factors, including weight, diet, whether they gave birth and breast fed, and family history,” says No Family History author Sabrina McCormick, Ph.D., a Robert Wood Johnson Foundation Health & Society Scholar at the University of Pennsylvania. 

The incidence of breast cancer has increased at an alarming rate over the past 60 years. In 1940, around one in 24 women who lived to be 80 was afflicted. By 2006, that number rose to one in eight.  

In her book, McCormick cites compelling evidence showing that the reason for this dramatic increase is the rise in the production and use of cancer-causing chemicals women are exposed to on a daily basis.  

Breast cancer “hot spots” from Long Island, N.Y., to Northern California have two common threads—industrial pollution and agricultural pesticides. These “hot spots” are pockets of the United States where breast cancer has risen six times faster than the national rate. In Long Island, the incidence of breast cancer is 200 percent higher than the national average. 

“In our race for a cure for breast cancer, we have ignored the overwhelming body of evidence that demonstrates a link between products from cosmetics to pesticides and breast cancer,” McCormick says. “We must focus on prevention by demanding safer products, reducing our exposure to chemicals and urging our policymakers to ban cancer-causing chemicals in everyday products.” 

European governments responded to this scientific evidence by banning cosmetic products with certain chemicals from being sold in their countries. According to No Family History, one American cosmetics company known as much for its “pink ribbon” marketing campaigns as for its pink lipstick removed these chemicals from products sold in Europe, but these same chemicals remain in the products the company sells in the United States. 

“Women and girls should not have to check the ingredients in every stick of lipstick and each bottle of moisturizer. Better regulation to ensure that these products are safe would go a long way to reducing the incidence of breast cancer,” McCormick says. 

Many companies that profit from “pink” marketing campaigns or breast cancer treatments, McCormick argues, are the same ones fighting against tougher regulations of cancer-causing chemicals in everyday products. McCormick dubs this the “political economy” of breast cancer.

“In the case of breast cancer, many activists have unwittingly bought into campaigns leading down the road away from a cause, and instead into more and more breast cancer,” McCormick writes in her book. 

No Family History: The Environmental Links to Breast Cancer (Rowman & Littlefield) is a provocative glimpse into environmental links to breast cancer, profiling research as well as women’s stories. McCormick recommends that women reduce their exposure to many cosmetics and toiletries and urges policymakers to strengthen regulations to ban cancer-causing chemicals from being used in everyday products. 

Reference: Robert Wood Johnson Foundation Health & Society Scholars, Are everyday products from cosmetics to household cleaners causing the high rates of breast cancer? June, 15, 2009 

For more information on the book (in stores in June) and a documentary McCormick produced on the subject, visit www.nofamilyhistory.org