Are phthalates really safe for children? 

Phthalates are important components of many consumer products, including toys, cleaning materials, plastics, and personal care items. Studies to date on phthalates have been inconsistent, with some linking exposure to these chemicals to hormone disruptions, birth defects, asthma, and reproductive problems, while others have found no significant association between exposure and adverse effects. 

A new report by Korean scientists, published by Elsevier in the November 15th issue of Biological Psychiatry, adds to the potentially alarming findings about phthalates. They measured urine phthalate concentrations and evaluated symptoms of attention-deficit/hyperactivity disorder (ADHD) using teacher-reported symptoms and computerized tests that measured attention and impulsivity. 

They found a significant positive association between phthalate exposure and ADHD, meaning that the higher the concentration of phthalate metabolites in the urine, the worse the ADHD symptoms and/or test scores. 

Senior author Yun-Chul Hong, MD, PhD, explained that “these data represent the first documented association between phthalate exposure and ADHD symptoms in school-aged children.” John Krystal, MD, the Editor of Biological Psychiatry, also commented: “This emerging link between phthalates and symptoms of ADHD raises the concern that accidental environmental exposure to phthalates may be contributing to behavioral and cognitive problems in children. This concern calls for more definitive research.” 

The U.S. Centers for Disease Control and Prevention, in the Summary of their 2005 Third National Report on Human Exposure to Environmental Chemicals, state that “very limited scientific information is available on potential human health effects of phthalates at levels” found in the U.S. population. Although this study was performed in a Korean population, their levels of exposure are likely comparable to a U.S. population.

The current findings do not prove that phthalate exposure caused ADHD symptoms. However, these initial findings provide a rationale for further research on this association. 

Reference: Elsevier, Common plastics chemicals linked to ADHD symptoms, November 19, 2009

Chemical Sensitivity – MCS is recognized as a disease and as a physical disability in Germany. The disease is coded at ICD-10 with T78.4 as an organic disease. One might think that people with MCS get proper medical treatment, are treated with fairness like other disabled people, get special workplaces and receive help. Sadly all of this is still lacking in Germany. People with MCS are left without medical attention and accommodations. If their families are unable to take care of them they are lost. For the very sick this sad and unacceptable situation can end in disaster as in the following authentic case.

The last few months of the life of Angelika S.

Six months ago Angelika S. was still doing fairly well. She lived with her family in a suburb of a German town. She loved animals and had a small animal hostel. She also cared deeply about other people.

I got to know her through my cousin who often visited her and mentioned four months ago that Angelika too had strange symptoms similar to my own. Suddenly, she didn’t tolerate fabric softeners – the shower gel of her family, the deodorants and a lot more now made her sick. My cousin told her about me and so we got in touch, first writing letters. She was looking for informational material about chemical sensitivity and I was sending it to her. About the same time I heard that she couldn’t tolerate the furniture and the flooring anymore and was sleeping on the kitchen floor on blankets. From now on everything went incredibly fast…

Nearly every day my cousin called me to report new intolerances. Because of the heat in August, she could only sleep outside on the patio on a kind of futon mat made from compatible materials. Then even this wasn’t possible anymore for her…

Calling an environmental doctor she was told, she would have to wait several weeks (vacation etc.). Then I could contact to her on the phone too. She was able to talk only five or seven minutes, because in addition now she had become electromagnetically sensitive.

Then I gave her the advice to drive to a nature area in her neighbourhood. She did so with her husband each morning between 7 and 8 o’clock. There she did much better. But it speeded up:  difficulty in breathing… heart palpitations …. decreased muscle tonus in the arms and legs …. pulmonary problems …. everything took a turn for the worse.

Since she couldn’t use the phone anymore, I talked to her husband instead. In September he brought her to an abandoned campsite of his club and they slept in the car…in small cars…she in her car and he in his car because his one was contaminated with chemicals from his work. During the daytime he had to drive 25 kilometres to his workplace and to leave her alone there. In the evening he was cooking the meals for her and brought them to her… again 25 kilometres … The nights in the car… bad for the joints.

Then her husband called the environmental doctor again and got the advice to arrange a clean room for her in their house. He should tile the room and keep her in it. So he removed the floor, tiled the room and painted the walls with safe chalk paint. Angelika still was at the campsite, alone during the daytime and it started to get colder…Two air purifiers where bought from PureNature, oxygen for the ride to her home… and then the attempt to bring her back to the new safe room. During the whole time her husband had to take time off from work which got more and more difficult. They had to worry that he would lose his job too.

When she was back at home, my cousin couldn’t come for a visit anymore. Also no one from the family could come to see her. When her son came, she had to escape, and had no contact to her beloved grandchild.

I have had Multiple Chemical Sensitivity for over ten years now, but I had the chance to grow into the situation and I know what isolation means. The soul suffers…tears come…sometimes depression…and when there is no or little hope and you do not really know what will happen to you…then everything is even worse.

But Angelika was learning fast and tried to avoid everything which made her sick; she ate organic food and changed everything.  But it takes time until all smells are out of a general household.

I supported her as much as I could by calming her down and providing her with information…Then the appointment with the environmental doctor came…He said that she has full blown Multiple Chemical Sensitivity and suggested a therapy only of B12 shots for six weeks daily with added B1 and B6. She started his therapy, but everything got worse.

Angelika had reached the end stage of Multiple Chemical Sensitivity in only six months.

When she still wasn’t doing so badly – that was in September this year – I had offered her a invitation to come to my place and try it here, but she wanted to try first the tiled room at home.

Last Saturday her husband called me to tell me that they had to drive to the forest or to a graveyard each night.  Otherwise she wasn’t able to breathe…The heating period made the air in the town intolerable for Angelika. Each night she suffered from heart palpitations, shortness of breath and many more symptoms.

I told them to try to come over to me and so they arrived at nine o’clock Saturday, October 25th.

The last days of the life of Angelika S.

She arrived totally exhausted with a mask and heavy use of oxygen on the ride. We placed her on the porch.

For me her clothes were totally contaminated from her environment. I had to keep distance. Then she wanted to change her clothes.  I offered her some of my clothes, but she couldn’t tolerate them. I had used an unscented safe washing powder which I tolerate very well.

To let her into the house we had to shower her in the evening. I found old jogging pants of my husband’s and a cotton pullover; both had not been washed for a long time, and socks…

But on what should she sleep? She couldn’t tolerate wood anymore, no natural wood furniture. It didn’t matter if it was old or not. She even couldn’t tolerate the very old closet in the room we arranged for her. She wanted to sleep on the floor on linen which had not been washed for a long time and on a blanket which had been hanging in the attic for a long time too.

The windows to the forest were open all night and all day…

We live here in Germany in a wide forest area at Vogelsberg and so she was doing well with the clean air. However, last Monday it got damp and foggy and we had bad weather.

Her hope vanished that she would slightly recover here, but she wanted to try.  She didn’t want to go back…

Either she lay or sat on the porch …. I cooked for her, gave her much water to drink …. tried everything possible to help her to restore her soul and mind …. told her about CSN and other sufferers who had recovered by avoiding substances and by isolating themselves. Each day we left for a walk in order to get some fresh air. So far she was still able to walk for an hour.  On Tuesday, though slowly, she was able to walk until a car passed by and left exhaust emissions, which affected her in spite of her mask.

Then she said she couldn’t live a life as I do, without people around her and in isolation for such a long time and then it got worse and worse.  She had no hope that she could stay here any longer because she couldn’t tolerate the damp air especially during the nights.  She refused to eat or drink anymore.  She was in despair and her mucous membranes were – as in her home – bright red and swollen.

She had to leave, but where to go????

We were considering many possibilities: Switzerland, North Sea…back to the campsite because there is not that much forest in its neighbourhood…setting up an aluminium shed…but how to heat it…and so forth…

On Wednesday at 3 o’clock p.m. the son of my cousin came with a big car which was safer than her car. Her husband and we said goodbye…

They didn’t know where to go…they didn’t know…what to do….so they first drove back to her tiled room and then to the close-by nature site.

She survived the ride at five degrees Celsius inside the car and then I heard nothing from them anymore.

On Thursday afternoon when her husband had to go to work and go shopping for food, she put an end to her life!  I did not learn of it until Friday evening because it was the wish of her husband.

We are in deep grief about this lovely person…a human…who still could be living if there was accommodation for cases like hers in Germany. If there was just one clinic to go to which had clean rooms as at the Environmental Health Center in Dallas / USA. If we just had doctors who could diagnose chemical sensitivity in time.  If we just had support for the relatives who don’t know why all this happens.

This ignorance and intolerance about environmental diseases MUST stop. These are diseases that have been described by scientists like Prof. Martin Pall and others.  It’s well known what these diseases DO exist.

I have seen two suicides since last July.

• Two precious humans who didn’t know what to do because of their boundless despair.
• Two humans who felt as a burden to their families.
• Two humans who had worked hard all their lives.

We lament Angelika S. and we are shocked because of the lack of help for people with severe Multiple Chemical Sensitivity.

May the God of solace comfort the suffering of the relatives and may they find hope that their suffering is not forever…

That it will not be like this forever…

That the suffering stops some day…

And that some day there will be a recovery of all things lost…

Authors: Wolfgang and Mona B., Silvia, CSN – Chemical Sensitivity Network November 2009

• Japanese Version: “The last few months of the life of Angelika S.”
• Italian Version: “The last few months of the life of Angelika S. ”
• Spanish Version: “The last few months of the life of Monika S.”

A study of 145 preschool children reports, for the first time, that when the concentrations of two common phthalates in mothers’ prenatal urine are elevated their sons are less likely to play with male-typical toys and games, such as trucks and play fighting.

The University of Rochester Medical Center-led study is published in the International Journal of Andrology.

Because testosterone produces the masculine brain, researchers are concerned that fetal exposure to anti-androgens such as phthalates “which are pervasive in the environment“ has the potential to alter masculine brain development, said lead author Shanna H. Swan, Ph.D., professor of Obstetrics and Gynecology, director of the URMC Center for Reproductive Epidemiology, and an expert in phthalates.

“Our results need to be confirmed, but are intriguing on several fronts,” Swan said. “Not only are they consistent with our prior findings that link phthalates to altered male genital development, but they also are compatible with current knowledge about how hormones mold sex differences in the brain, and thus behavior. We have more work to do, but the implications are potentially profound.”

Phthalates are chemicals used to soften plastics. Recent studies have shown that the major source of human exposure to the two phthalates of most concern (DEHP and DBP) is through food. These phthalates are used primarily in polyvinyl chloride (PVC), so any steps in the processing, packaging, storage, or heating of food that use PVC-containing products can introduce them into the food chain.

Phthalates are also found in vinyl and plastic tubing, household products, and many personal care products such as soaps and lotions. Phthalates are becoming more controversial as scientific research increasingly associates them with genital defects, metabolic abnormalities, and reduced testosterone in babies and adults. A federal law passed in 2008 banned six phthalates from use in toys such as teethers, play bath items, soft books, dolls and plastic figures.

In Swan’s study, higher concentrations of metabolites of two phthalates, di(2-ethylhexyl) phthalate (DEHP), and dibutyl phthalate (DBP), were associated with less male-typical behavior in boys on a standard play questionnaire. No other phthalate metabolites measured in-utero was linked to the less-masculine behavior. Girls’ play behavior was not associated with phthalate levels in their mothers, the study concluded.

Swan’s interest in phthalates stems from an investigation into the environmental causes of reproductive health problems. Since 1998 she has led the federally funded, multi-center Study for Future Families (SFF), which established a large database from which to explore various scientific questions about toxins.

The current study focused on a small sample of SFF mothers who delivered children between 2000 and 2003. The mothers provided urine samples around the 28th week of pregnancy. The urine was analyzed for phthalate metabolites by the Centers for Disease Control and Prevention (CDC).

Swan hypothesized that phthalates may lower fetal testosterone production during a critical window of development – somewhere within eight to 24 weeks gestation, when the testes begin to function – thereby altering brain sexual differentiation.

To explore the question, researchers reconnected with mothers from the SFF sample and asked them to complete a standard research questionnaire, called the Preschool Activities Inventory (PSAI), for their children ages 3 1/2 to 6 1/2 years.

The PSAI is designed to discriminate play behavior within and between the sexes, and in the past has been shown to reflect the endocrine-disrupting properties of other toxins, such as PCBs and dioxins. The PSAI addressed three aspects of play: types of toys children choose (trucks versus dolls), activities (rough-and-tumble play, for example), and child characteristics.

However, researchers were concerned about how the choice of toys available in any given household might skew results, so in addition they asked about parental views toward atypical play. For example, the survey asked, “What would you do if you had a boy who preferred toys that girls usually play with?” The possible answers included “strongly encourage” (him to play this way) to “strongly discourage.”

The final survey scores are designed to reflect sex-typical play. Higher scores meant more male-typical play and lower scores meant more female-typical play.

Researchers then examined boys play-behavior scores in relation to the concentration of phthalate metabolites in their mothers’ prenatal urine samples, finding that higher concentrations of DEHP and DBP metabolites were associated with less masculine play behavior scores.

Earlier studies by Swan and others have shown that phthalate exposure during pregnancy might affect the development of genitals of both male rodents and baby boys. Scientists refer to this cluster of genital alterations as the “phthalate syndrome,” and research suggests that in rodent pups, the syndrome can have adverse consequences for later sexual development.

If endocrine disrupters such as phthalates can impair genital development and hormone levels in the body, the play-behavior study noted, then a deeper examination of how these chemicals impact the brain is warranted.

Reference: University of Rochester Medical Center, Pilot study relates phthalate exposure to less-masculine play by boys, Nov. 16, 2009

Eva Caballé is the author of the recently published book in Spanish Desaparecida. Una vida rota por la sensibilidad química múltiple (Missing. A life broken by Multiple Chemical Sensitivities) published by El Viejo Topo, Barcelona, Spain, 2009.

Interview by Salvador López Arnal, November 2009 :

“Yes, there is something hidden in this silence. It is the interests of the chemical and pharmaceutical companies so that people won’t know that their products are causing new and terrible illnesses like Multiple Chemical Sensitivities (MCS). Actually, recently it has been demonstrated that MCS is not a psychological illness and that old studies that said so were fabricated to protect the interests of the chemical and pharmaceutical industries”.

Eva Caballé

Eva Caballé is a 37 year-old Barcelona economist who lives with MCS. She was a bank employee and was a member of the rock group Lefthanded and now is the author of the recently released book (in Spanish) released by the publishing house, Libros de El Viejo Topo, Desaparecida. Una vida rota por la sensibilidad química múltiple (Missing. A life broken by Multiple Chemical Sensitivities). In the book’s introduction, Clara Valverde, says: “…But Eva is not weird. It is known that 0.75% of the population now lives with severe MCS and that up to 12% have mild or moderate MCS. All those people who are bothered by smells, those are part of that 12%. But most doctos and the majority of society are not aware of this and that is why it has taken Eva so many years to receive the right diagnosis. That is why Eva only has the help of her immediate family. That is why there are no demonstrations about this out on the streets nor her case is on the front page news.”

Eva Caballé is also the author of the blog “No Fun”. She says: “No Fun is a blog about Multiple Chemical Sensitivities, Chronic Fatigue Syndrome/ME and Fibromyalgia with information and advice for people who are sick and for anyone who wants to live a healthier life free of toxics”.

López-Arnal: Let’s start with a definition. What is MCS?

Eva Caballé: MCS is an aquired chronic illness, not a psychological one, which manifests itself with multisystemic symptoms as a reaction to a very small exposure to chemical products, normal everyday chemicals but unnecessary ones, like perfumes, air fresheners or laundry softeners.

The symptoms, which are chronic and they become acute in a crisis, include fatigue and respiratory, disgestive, cardiovascular, dermatological and neurological problems.

MCS is a syndrome with three grades of severity, so not all of us who are sick suffer the same level of disability and isolation.

It is an illness which has been known since the 1950s, but it has yet to be recognized by the World Health Organization (WHO), despite that there are more than 100 research articles that support the organic basis of MCS, that the number of people affected is increasing rapidly, at a younger age, and that the European Parlament includes MCS in the growing number of illnesses related to environmental factors.

LA: You say that MCS is not recognized by the WHO despite the number of scientific articles that support the organic basis of this illness. Why do you think that the WHO is so sceptical, so cautious?

EC: We know that the WHO has been debating the MCS issue for years. But the process of recognizing the illness is taking longer than usual due to the pressure that the chemical and pharmaceutical industries are putting on the WHO, as they are not interested in having it known that they are directly responsible for this illness.

Without going any further, in Germany, where MCS is recognized as an illness, the industries continue exercicing their control through tools like Wikipedia. This was denounced by the CSN Association in an article which I translated and published on my blog.

The article about MCS in Wikipedia in German is edited each day, sometimes every few minutes, because the administrators of Wikipedia, who have interests in the industry, veto the information trying to make sure that MCS is not known or if it is, that it be thought of as a psychosomatic illness.

LA: You also say that the number of people with MCS is growing rapidly. Can you give us any data to illustrate this?

EC: I am quoting Dr J Fernández-Solà (an Internal Medicine specialist from the Hospital Clinic in Barcelona) who, in an interview that was done with him at the beginning of this year for an article on MCS in the Spanish magazine, Interviu, said that the amount of patients who were seeking medical help for this illness is growing rapidly. In his hospital, each year, they get between 50 and 60 new patients. That means one new patient a week.

LA: What symptoms could make one think that they have this illness?

EC: Perhaps the most common symptom is to notice unbearable smells which one did not notice before. One stops tolerating various chemical agents like cleaning products, perfumes, tobacco smoke, car emissions, etc. When you have MCS and you are exposed to these chemical agents, a series of symptoms are triggered automatically like choking, irritation of the respiratory tract, tachycardia, headaches, mental confusion, dizziness, nausea, diarrhea, extreme fatigue and/or pain. These symptoms don’t get better until you stop being in contact with the chemical agent that produced it.

Normally you also stop tolerating alcohol, dairy products or gluten. You also develop intolerance to various foods and medications.

Often there are other environmental intolerances: to heat, to cold, to noise, to sunlight and to electromagnetic fields (computers, high power lines, telephones, cellular phone atennas, microwaves, etc).

LA: What differences are there between MCS and, let’s say, Fibromyalgia?

EC: MCS, Chronic Fatigue Syndrome/Myalgic Encephelitis (CFS/ME) and Fibromyalgia (FMS) are illnesses of the same family. In fact, many of us who have MCS, we actually have the three illnesses and more and more people with CFS/ME and FMS, with the years, also develop MCS.

We have a lot of the same symptoms, but the biggest difference is that those with MCS do not tolerate even the smallest exposure to chemical substances, which is the reason why we have to maintain a strict environmental control and we cannot go outside without a mask with a carbon filter to filter out the enviromental toxics.

LA: What medical treatment does a person with MCS receive from the Spanish health care system? Do you think it is adequate? Do you think it is fair?

EC: In Spain, MCS is not recognized as an illness and so health workers and the general population are not aware of this serious pathology.

Instead, countries like Germany, and recently Austria and Japan, have recognized it and other countries are on their way to doing so and offer health services to those who have it and are establishing protocols for prevention.

In Spain there are hardly any doctors in the public health care system who can diagnose this illness and it is very hard to get a diagnosis and even harder to get treatment. I am convinced that there are a lot of people in our country who have MCS who are not diagnosed, many of who end up in the hands of psychiatrists because of the lack of knowledge of our doctors. Also there are no protocols or policies on “Free of fragrances” for our hospitals and public buildings, so for us going to the hospital means getting sicker.

In Spain, we people with MCS do not have health care services, we do not have the right to economic help to adapt to our disability and we do not have the right to a pension when we cannot work. I don’t just see it as unjust: I think the way we are treated is a violation of our constitutional rights.

LA: But, isn’t it a bit of a contradiction the fact that the European Parliament considers MCS an environmental illness and that in Spain, the central government and the regional governments look the other way?

EC: Of course it is! It is all with the excuse that the WHO has not yet recognized it as an illness. This does not mean that it does not exist: the decisions that are taken at a bureaucratic level do not make us patients disappear by magic.

They use this argument to discredit the illness when it is all really a conflict of interests. Also they will tell you that there are no specific biomarkers for MCS, but that is the same as other illnesses which are recognized.

LA: What percentage of the population is it thought to be affected by this illness right now?

EC: According to the 2007 study published by doctors from the Barcelona’s Hospital Clinic, J. Fernández-Solà (Internal Medicine) and S. Nogué Xarau (toxicologist), 5% of the population has MCS. They specify that: “More that 15% of the general population present mechanisms of excessive response when faced with a chemical or environmental stimulus. In 5%, these processes are clearly pathological and they are above the organism’s capacity to adapt and so it results in skin, respiratory, digestive and neuropsychological manifestations, frequently chronic and persistent”.

So if MCS affects 5% of the population, it cannot be considered a “rare disease”, which are the ones that affect less than 0.0005% of the population.

LA: Are you speaking about the Spanish population or are you thinking in European or world terms?

EC: I am talking worldwide. It is considered an illness of the industrialized world.

In countries where there are statistics about this illness, like in Canada, we see that the amount of people that have MCS is not small. According to the Environmental Health Association of Quebec, there are 4 million people with MCS in Canada.

LA: And do we know the causes? MCS, as you have said, is a disease related to environmental factors. What does that mean exactly?

EC: Studies say that the cause is the toxics in the environment we are exposed to. There are two ways of developing MCS: from one single exposure to toxics at a high dose or by several exposures to small amounts over the years.

There are toxic substances in the air we breathe, in the water we drink (in the plastic if we drink bottled water), in the clothes we wear (formaldehyde, dyes, traces of pesticides), in the cleaning products, in our beauty products, in the food we eat (pesticides, additives and artificial colours which have been banned in the USA for many years for being cancer causing) or, for example, in the silver dental fillings (which have mercury).

Over the years, our body accumulates all these chemical substances which circulate in our environment without any controls, substances which we must remember that it has not been so many years that they have been in use, until the toxic load is unbearable and we end up getting sick, which according to our genetic make-up, it could end up being MCS. But other people do not get off scott-free because they will end up developing cancer, asthma, allergies, autoimmune diseases or any other illness of environmental origin.

Even doctors complain that there is no funding for researching MCS, that no one wants to fund MCS studies, because studies normally are funded by pharmaceutical companies so they can develop a medication, that is, for their own benefit. But as MCS patients do not tolerate any medication, we are of no interest to them.

LA: But, what sense does it have to know all this and not take any measures? Why do we keep using these products if we know of their toxicity and of the high risk their use entails? It is not an ideal situation the one you describe. Why do we not put some order in this toxic chaos?

EC: That is a good question. It does not make any sense to not take any measures and to keep on using these products. If health authorities do nothing, the option is to stop using these toxic products and it will have to be us who take charge of things.

In the labels on the fabric softener, the beauty products, the perfumes or the air fresheners it does not say: “Warning, this product is toxic and it will keep accumulating in your body until it causes you Multiple Chemical Sensitivities”. No one warned me. That is why I try to share all that I have learned ever since I got sick 4 years ago so that people will know what we are not being told.

If, for example, it is so hard to regulate tobacco, all this will surely be harder because we are not talking about one product. The problem is more than that. Has everyone forgotten that in the 1960s medical reports were hidden or changed, reports that showed that tobacco caused cancer? What is happening is nothing new. Power is not in the hands of politicians. It is in the hands of the multinationals.

LA: Describe, briefly, the life of a person with MCS. What measures does the person have to take? What treatment does the person have to undergo?

EC: The treatment is basically one concept: Environmental Control.

Environmental Control is to basically avoid, as much as possible, any exposure to toxics or chemical substances in general and the basic points are:

• Eat organic, non-processed foods (normally it is recommended to avoid dairy products and gluten).
• Filter the water, the drinking water and also the water for cooking and showering.
• Substitute all beauty and cleaning products with ecological ones, ones without aroma. Logically, one must stop using colognes, air fresheners, laundry softeners, etc.
• Use ecological clothing that does not have any dyes nor toxics.
• Get an air filter.
• Buy furniture and mattresses that are made of ecological materials that have not been treated with chemicals and when you paint the house, it must be ecological paint.
• Avoid or minimize exposure to electromagnetic fields.
• Use a carbon-filter mask when you go outside or in situations in which there are a high concentration of toxics.
• Try to live in an area which is the least contaminated as possible and in a house made of non-toxic materials.

As you can see, Environmental Control involves a high financial cost, for which we have no help and also, the last point, is almost impossible to carry out.

Besides Environmental Control, which is also beneficial for healthy people, there are personalized treatments. These involve nutritional supplements, saunas, oxygen therapy, etc. Each person with MCS is different and also some people have other added illnesses. Therefore, one has to have a lot of tests done to determine what is best in each situation. In Spain, none of this is covered by the public health care system.

Those of us with severe MCS can barely leave the house. Our lives are reduced to our house, which becomes our prison, in which most of us cannot even do any housework. In some cases, we spend most of the day in bed and rely of family members for almost everything. The contact with the outside world is reduced to talking on the phone, those who have energy to do so, the odd visit from people who are willing to change their washing and cleaning habits, and through Internet, for those of us who do not have severe cognitive or electromagnetic problems.

LA: What government help does a person with MCS receive? It does not seem possible for someone so sick to go to work. How can you organize your home if your family does not have the available time?

EC: We get no help when we have MCS. Even the masks, without which we cannot survive, we have to pay them ourselves. This is the economic drama that goes along with this illness.

When one has severe MCS, one cannot work, but if one has mild MCS it is not possible either because no employer is willing to adapt the work place so that a person with MCS can continue working. In some cases, some people get disability, but usually it involves going to court. We must remember that there are young people who get sick who have not worked long enough to have the right to a pension. What is their future? I always say that I am amazed that there is not more depression amongst people with MCS. Who would not be depressed in such a hard situation?

One can try to get disability, but the amount of money that one gets is very small, depending on the scale of severity recognized.

In my case, I am lucky to have my husband’s and my mother’s help, because I am so severely ill that I cannot do anything in the house, nor even cook for myself. Even if I had the money to pay someone to come and help me at home, that would not be possible. Just to be able to have my mother come over, she has had to change all her washing and cleaning habits as well as showering herself before coming.

LA: Why do we hear so little about Multiple Chemical Sensitivities? What is behind all this? What is behind this silence?

EC: Yes, there is something hidden behind this silence: the interests of the chemical and pharmaceutical industries not to have it known that their products cause terrible new illnesses like MCS. Recently it has been proven that MCS is not psychological and that studies that were done in the past which said that it was psychological were manipulated in order to protect the interests of the chemical and pharmaceutical industries.

Unfortunately, it is very easy for the government to ignore us, as most of us live under house arrest and we do not have the strength to organize ourselves. It is clearly an abuse of power. Only our families, friends and neighbours know we exist and how hard our everyday life is.

But, despite the seriousness of our situation, we are many, more every day who, from our homes, through Internet, fight for our rights, to try to make MCS visible and we share information to help each other out, as our government does not help us.

LA: You talk about studies that were altered that “showed” that MCS is a psychological illness in order to preserve the interests of large corporations. Were they blinded by the colour of money? Can you give us an example?

EC: On September 2008, the magazine Journal of Nutritional & Environmental Medicine, published a study by Goudsmit and Howes entitled “Is multiple chemical sensitivity a learned response? A critical evaluation of provocation studies” This study showed that MCS is not a psychological illness and that its origin is tied to chemical substances. I translated to Spanish the article that MCS America dedicated to this study:

“In the past, a small number of badly designed studies, suggested that MCS was a psychological illness related with pre-existing expectations and beliefs. This is a stance that the pharmaceutical and the chemical industries have made an effort to have everyone believe, because this way, their chemical products would stop being the  responsible ones and the use of profitable psychiatric medications would be promoted, in the absence of medications which could counteract the effects of environmental contamination. Given the fact that most chemical and pharmaceutical companies have the same owner, this position has been promoted energetically and very cunningly through publications controlled by the industry itself. Fortunately, these manipulated studies were examined by Goudsmit and Howes using additional scientifically accepted criteria. That way, the studies that talked about a psychological base for MCS were proved to be very misleading due to numerous deficiencies and methodological mistakes. It was determined that MCS is related to exposure to chemical substances rather than to anxiety, psychosomatic states and depression.”

LA: One of your articles is entitled “We are born naked” and it has had a great repercussion amongst people with MCS and other people interested in the topic. Why? What was this article about?

EC: I wrote the article for the on-line cultural magazine Delirio, which exposed, without holding back, the total neglect and abandonment that we, people with MCS, suffer, making a special point on the situation in Spain. “We are born naked” had also two photos of me naked wearing a mask which caught the attention of MCS associations in other countries, which resulted in it being translated into 9 different languages.

The reason for its success is that people ill with MCS all over the world felt totally  identified with the situation we live in Spain. Unfortunately, even in countries were MCS is recognized, people with this illness are abandoned and silenced because of the economic interests go before our health.

In the next number of Delirio, dedicated to the topic of silence, there will be another article on MCS. They have asked me to write it to explain the success of “We are born naked” and that way we continue to inform on MCS.

We are the “canaries in the mine”, we are the warning of the disaster which is coming. We are the evidence that the actual model of society has failed, although no one wants to admit it nor pay for it, nor do anything about it. For all this, they want to silence us.

LA: Disaster that is coming? What disaster? Why has the actual model of our society failed? Is this because of the illnesses it generates? Tell me about a more humane model.

EC: The cases of MCS are increasing rapidly and in younger and younger people. Each day there are more children with allergies, asthma, with celiac intolerance, etc. The cases of cancer are multiplying and are appearing in families with no cancer history. There are constantly new studies that show the relationship between chemical substances and electromagnetic radiations with certain cancers or an increase in allergies. If something is not done, the future that awaits us is not that of a healthy society.

I, like other people with MCS, are the proof that this society has failed. When I was little, I use to think that the government looked after us and that if something was sold, it was because it was safe. I could not have been more wrong. The air quality in cities like Barcelona or Madrid is scandalous. Our food is full of pesticides, with all kinds of additives and they are allowing the use of transgenic modified foods. They let us get sick and then they abandon us with no help, with no health services as it has happened to me. You study and get a degree, you have a good professional career and when you are supposed to begin to enjoy your life, it is all over. Is that a Welfare State?

Measures have to be taken to stop putting the economic interests before health. Chemical substances and electromagnetic radiations should be banned and regulated. Transgenic modified foods should be banned. Organic farming should be encouraged as well as alternative energies…There is an infinite number of measures to be taken, but the important thing is to change the direction and to start before it is too late.

LA: You have written a book, a magnificent book, entitled Missing. Why Missing? Where have you disappeared from?

EC: Thank you for praising my book. As a new writer, it is an honour.

LA: The honour, dear Eva, will be that of the readers, I can assure you.

EC: I thought of the title when I read the great introduction to my book that Clara Valverde has written (she is a writer, president of the Liga SFC- CFS League- and lives with Chronic Fatigue Syndrome). It was then that I realized that a lot of people might think that I disappeared from the face of the Earth. I went from having a job with a lot of responsibility in a bank, going to the gym every day, going to rock concerts, going out with friends and sharing holidays with my family, to being locked up in my house to be able to survive. Seen from the outside my immediate group, I am missing, kidnapped by MCS.

The outside world is toxic for all, but for those of us who have MCS, it is to the point that we cannot go out without a carbon-filter mask that protects us from harmful chemical substances and, in some cases, the severity is such that even with a mask, we cannot go out. I am sentenced to live within my four walls because they have not taken measures to ban chemical substances that, in me, set of a crisis and in other people makes them develop an environmental illness. Does no one realizes that it is not normal that every day we hear of a cancer death? Does no one care that this society is sicker every day and that this is not sustainable?

LA: Finally, how should society and the health services act regarding these new illnesses? Are they really new? Can you suggest some basic ideas?

EC: As I was saying before, MCS it not really new as the first cases were reported in the 1950s. We cannot use the idea that they are new as an excuse in 2009 to justify that nothing has been done.

At an international level, the first thing should be that the WHO recognize MCS once and for all as an illness. But until this happens, our country should recognize MCS, following the example of other European Union countries. Also they should train doctors and adapt the health services for MCS. All this would also mean that we should have access to disability pensions and other support to be able to adapt to our illness.

Right now, when people with MCS get sicker, because of our illness or because of another illness we might also have, we do not have anywhere to go because there aren’t any hospitals that are prepared for us and health workers do not know about our pathology. That’s how serious our situation is.

It is also necessary to put into place prevention policies such as “Free of fragrances” ones in hospitals and public buildings and to control and ban certain substances. All this would be beneficial for the health and well-being of all citizens, not only those of us who have MCS.

And, obviously, there should be put in place a public education campaign so that people can get to know our disability. When you go out on the street with a mask, you leave yourself open to all kinds of mocking and abuses and this is unacceptable. There are people who are ill who do not even get any support from their friends and family, all because MCS is not recognized.

We are not asking for a special treatment, but an adequate treatment for the problems that this illness creates.

LA: What you are saying and asking for is very reasonable. Thank you for your words. Would you like to add something else?

EC: Yes. I would like that making my situation public, as I do through my blog and now, even more, through my book, could serve as a warning to all those who are still healthy. Perhaps they think that because they do not have the genetic predisposition to MCS, they are safe, that they cannot get sick like I did. But this is not so. As I have told you, the chemical substances that cause MCS, also provoke many other illnesses. Also, we can and we should live in a different way, without so many chemical products and that will be good for our health and also for the environment. We must change before it is too late and the change starts with each one of us because as consumers we have a lot more power than we think. If there is no demand, then there is no offer.

And to end I would like to bring up a paragraph from my article “We are born naked”:

“Those of us who live with MCS would like this illness to be recognized, we would like to have the same rights as other chronic patients, we would like society to know of the risk it is in, we would like the government to protect its citizens and to help them prevent getting sick unnecessarily. We don’t want anyone else to feel naked because of having MCS”.

—

Interview by Salvador López Arnal with Eva Caballé, November 2009

Press release of the German Professional Association of Environmental Medicine (Deutscher Berufsverband der Umweltmediziner – DBU)

from 26. October 2009

Swine flu vaccine is unsuitable for patients with environmental diseases and other chronic multi-system illnesses.  Pandemrix® poses substantial health risk with respect to mass immunization programs due to the lack of proof of safety.  Because of the producer’s release from liability by the German Federal Government (BRD), the risk of adverse reactions and/or permanent damage due to the vaccine rests with the patient.

The German Professional Association of Environmental Medicine (DBU) has, in spite of press releases from the BRD, the Paul-Ehrlich-Institute, as well as the vaccine producer’s assurances of safety, serious concerns relating to Pandemrix® (GlaxoSmithKline), the only vaccine which has been approved for mass vaccination by the BRD.

The DBU discusses at this point neither the medical use of immunization in general nor the necessity of such measures in the, up until now, mild course of the swine flu pandemic.

Our criticism is directed only against the pandemic vaccine Pandemrix®.

• There exists considerable doubt as to the effectiveness of the vaccine: during the licensing phase, the vaccine tested had a 40% higher portion of virus antigen (5. 25µg) than the vaccine (3.75µg) now being delivered. An unequivocal consensus has not been reached as to whether the vaccination should be given once or twice a season !!!

• There exists considerable doubt concerning the safety of the adjuvanted active amplifier since it is being used for the first time. The vaccine contains 27.4mg AS03, an emulsion of polysorbate, squalene and tocopherol. Sufficient studies are lacking, because in the test phase, only the development of antibody titers was determined as a surrogate criterion, and not any potential adverse reactions.

• The producer as well as government agencies have concealed the fact that squalene, if used subcutaneously or intramuscularly is an inflammatory immune activation immunogen, unlike when ingested. (Squalene is, among other things, for example, naturally contained in olive oil.)

• Autoimmune diseases can be provoked by squalene; already existing ones can be activated. Squalene has been connected with the emergence of Guillan-Barré Syndrome (GBS) and is now considered a trigger for Gulf War Syndrome (GWS). In animal studies squalene brought on rheumatoid arthritis.

• Squalene from food sources is mainly incorporated into membranes in the body. The production of squaline antibodies resulting from an immunization sets off chronic inflammation of the membranes, which explains diseases such as Gulf War Syndrome and also degenerative neurological diseases such as Multiple Sclerosis, Amyotrophic Lateral Sclerosis, Chronic Inflammatory Demyelinating Polyneuropathy and Guillan-Barré Syndrome.

• The delivery of vaccine in multiple dose ampules is obsolete. In single dose ampules the mercury used for preservation, as in thimerosal – which is included in Pandemrix – would be unnecessary.  Also, mercury has been proven to set off autoimmune diseases.

• Since the vaccine has not been tested on either young children or pregnant women (Ethics Commission objection), the call to give preference in the first phase of vaccination to precisely this particularly endangered segment of the population represents an improper and totally unjustifiable field test.

• The vaccine poses a higher risk than the swine flu itself for patients with environmental illness and for patients with compromised immune systems (e.g. AIDS).

• The vaccine producer GlaxoSmithKline (GSK), according to the contract with the BRD, is largely exempt from liability. In case of damage from the vaccination, the affected vaccinee would have to sue the government and therefore the country of Germany, usually a futile exercise.

• To avoid the trap of liability, the doctor giving the vaccination must meticulously inform the patient of all risks concerning the vaccination and the vaccine. It is recommended to give this information in the presence of an assistant and to have it be confirmed by the patient’s signature. The explanation should also include the liability features. Also the indication that other, lower risk vaccines are available in Europe and that due to a faulty decision by the German government, they are currently not available to the German population. This information should definitely be included in the explanation.

For general and environmental health considerations the DBU urgently advises against carrying out a vaccination with Pandemrix® !

Dr.med. Hans-Peter Donate

for the board of the German Professional Association of Environmental Medicine (DBU)

Translation: CSN – Chemical Sensitivity Network