An Account from the Editor of the CSN-Blog

Several years have passed. We still had local self-help groups and met monthly. We kept contact by phone, because barely none of our members had internet. Most of them became ill by chemicals at the workplace. Though it is ten years ago, we still remember certain people or episodes. Last week when a woman with Chemical Sensitivity (MCS) and severe toxic injuries sent an article for the blog, in which she reported on the struggle with the German Federal Insurance Institution for Employees because of a scheduled Rehab, we returned to a case.

Marked by chemicals

We had a meeting of our local “Workgroup of Chemically Injured”. The guy was rather young but looked quite older. He entered the room escorted by his sister. She had to support him, because the young man lost his sense of balance. After the speeches we chatted. The Sister said her brother was already exhausted as he tried to listen and he is nearly unable to speak. Once he worked at a big car tire manufactory. Now he is a health wreck. In spite of his harrowing state of health, the social pension fund created stress and refused to pay. The Workers Compensation didn’t act any more cooperatively: they denied realizing a connection between the desperate state of health and the chemical exposure at work. Though he was on the ropes, the young man was not willing to accept the experience of injustice by these insurance companies in addition to his physical suffering.

Brain damage by solvents

His sister told that he has gone through brain surgery. They hoped to manage his vertigo and his brain symptoms with a demanding operation. There was no improvement – rather the opposite. Most of the day he stayed in his room and watched videos. Contact with his friends was nearly broken for two reasons. The young man was no longer capable of conversation and he was unable to drive his car to his friends, who lived in neighboring locations. Friends who still came to visit him in the beginning were completely shocked by the bad health of their peer and could hardly deal with the sight. This few visits were the result, and then nobody came again.

Injured by chemicals at workspace

But for all of that the family of the man endeavored to enhance his state. The sister said that his condition isn’t always the same, so she hopes that there will be some turn for the better. She asked what the family may do to achieve a bit of health stabilization. At that time, my first advice to her was to arrange the man’s room to be absolutely free from chemicals and to abandon plastic materials completely, because he had become ill from synthetics, solvents and rubber.

The sister listened to my detailed explanations, how a clean room for a chemically sensitive person should look like. After that she rated the room totally inappropriate, in which the former quite vital young man spent nearly all of his time. There he had a TV, a video recorder, many video tapes, carpeting, a normal foam mattress in the bed and vinyl wallpaper. A room like the ones of many millions other young folks.

Aid by the family

The family was serious about it. They wanted to see the young man healthier again. They dedicated all their efforts. Two rooms at ground level were arranged for him. They tiled the floor and finished the walls with safe natural paint. They obtained a good air purifier, a mattress from natural material and made everything compatible.

Scarcely two months later the sister called me by phone. As she started to speak, the depression in her voice had completely disappeared. It is unlikely to believe, but her brother feels better worlds apart. At Saturday he even was able to visit his friends in the neighbor town riding his car without any help. She said, the whole family is overjoyed, because they didn’t consider such a recovery possible any more. The young man only became dizzy, when he was exposed to certain chemicals. He learned to detect such situations and avoided exposure. He left instantly when he realized them. Step by step his former vitality returned. The sister called more often and proudly reported on his further progresses.

Rehab in face of the delicate state of health

Then there was another call. Completely upset, the sister told that her brother received a letter from the social pension fund. He’s scheduled for a rehab. They rang up to tell the official from the German Federal Insurance Institution for Employees about the state of the young man and that he needs a chemical free environment and organic food. There was no understanding: he was liable to cooperate or otherwise his entitlement under pension scheme will be lost. The result of a call to the specified rehab clinic was that nothing there met the requirements for the young man’s health. Nevertheless he had to go into the regimen, they wanted to estimate his working ability and stabilize him, as they said.

Bring a wheelchair

At the next call, the voice of the sister was nearly dead. She told that her brother really had been in those rehab. She picked him up yesterday. He was there for nearly four weeks. When she phoned in, she was not permitted to speak with her brother. This was not beneficial for the therapy, they said. The day before yesterday they called her in the morning. She was told she could pick up her brother and may please bring a wheelchair.

Anger and pain

The sister reported that she broke out in tears as she came for her brother. No trace was left of the previous improvements in his health. His state was worse than before all the measures which had been taken by the family with great efforts and financial costs.

She had to carry her brother into the car helped by a male-nurse. She asked the nurse what had been done with her brother in the rehab. He shook his shoulders and turned his view to the floor. At this moment she had boiled with rage and went into the building then and closely looked at it. Heavy chemical smell from carpeting engulfed her. It’s just newly installed, so it still smells, the nurse told her. She asked to be shown to the room. Carpeting, smell of disinfectants, particle board furniture etc.

The refectory, in which her brother was urged to take his meals, was more than 100 meters away. To reach it he has to pass a long hallway without windows for ventilation, floored with carpeting which badly smelled from chemicals and adhesives. He repeatedly begged to be allowed to have his meals in the room, which was not allowed. Other patients even had offered to bring him the meals to save the staff from extra work. The directive was not changed; the young man had to resort to the refectory for the meals, where he additionally was exposed to perfumes, after shave and other scents. As he became unable to make it through the long hallway afoot, he got a walking frame, shortly later they gave him a wheelchair.

The indoor pool of the rehab was near the brother’s room. The odor of chlorine flooded the whole area. In spite of his heavy reactions to chlorine he had to take part in the exercise therapy in the swimming pool for several times. He was exempted from participation when he nearly “drowned” in the pool, because of a reaction.

In a strained voice the sister said after her report: “They have not made my brother healthy, they have executed him and now I know why I never was allowed to have a word with him. Any health success he had before the rehab therapy is destroyed.”

Health decline by rehab

This is no isolated case even if it is in his consequences one of the most worst cases ever reported to me. There are no rehab facilities adapted to the needs of chemically sensitive patients in Germany.

If patients with Chemical Sensitivity scheduled for a rehab ask about the local environmental conditions and explain that they cannot stay in such premises because of their reactions to chemicals, they were blamed for a lack of cooperation.

Some chemically sensitive persons had to accept a substantial decline of their health, because they were scheduled to rehab clinics which offered neither organic food nor chemical free environmental conditions, and where the smell of scent agents and disinfectants flooded the whole building.

Many chemically sensitive retirement pensioner aspirant tried to hold out – or managed somehow to hold out, to avoid being alleged for having not “cooperated”. These chemically sensitive patients feared to forfeit their pension claim. An enhancement wasn’t ever reported in a single case. On the contrary: what the chemically injured persons had regained by many restrictions and a environmental controlled living space was lost.

Finally? Hopefully

But it seems the German Federal Insurance Institution for Employees sees reason to show some understanding. A single mother struggled until the Insurance understood. Finally, the rehab measure for which they put her under heavy pressure was withdrawn, accepting her MCS and due to the lack of a suitable clinical facility for chemically sensitive patients.

Author: Silvia K. Mueller, CSN – Chemical Sensitivity Network, April 6, 2010

Translation: Thank you very much to BrunO!

Proof-reading: Thank you very much to John!

Related articles:

• The psychogenic Thesis for environmental diseases – No value for Science, destructive for legal Rights
• How to become a MCS-Activist in less than 365 days? Have look at Spain!
• Medicine needs shift in paradigm to focus on Environmental Medicine
• The last few months of the life of Angelika S. who was chemically sensitive

The European Food Safety Authority (EFSA) has published an analysis of the levels of dioxins and related substances in food and animal feed. The report, which was prepared by EFSA’s Data Collection and Exposure unit, is based on over 7,000 samples collected by 21 European countries between 1999 and 2008. EFSA was asked by the European Commission to evaluate dioxin contamination levels in relation to maximum levels which have been set for different categories of food and feed in the EU in order to protect consumers.

Dioxins and similar compounds, such as dioxin-like polychlorinated biphenyls (PCBs), include a range of toxic substances which are formed by burning – e.g. through waste incineration or forest fires – and some industrial processes. Their presence in the environment has declined since the 1970s, following concerted efforts at the EU level.

Dioxins are found at low levels in many foods. They do not cause immediate health problems, but long-term exposure to high levels of dioxins has been shown to cause a range of effects, including cancer. Their persistence and the fact that they accumulate in the food chain, notably in animal fat, therefore continues to cause some safety concerns.

The highest average levels of dioxins and dioxin-like PCBs in relation to fat content were observed for liver and liver products from animals. The highest average levels in relation to total product weight were for fish liver and products derived from fish liver. In animal feed, the highest average levels were found in fish oil.

Overall, 8% of the samples exceeded the different maximum levels set out in EU legislation. However, some of these samples clearly originated from targeted sampling during specific contamination episodes. There were also large variations between different groups of food and feed in terms of the proportion of samples which exceed maximum levels.

The report concludes that no clear trend can be established regarding changes in background levels of dioxins and related substances in food and feed over time, as there were increases in some categories but decreases in others. Furthermore, occasional contamination episodes and a lack of information on which samples resulted from targeted or random sampling make it difficult to assess such trends.

The current EU method for measuring overall dioxin levels is based on toxicity values for different types of dioxins recommended by the World Health Organisation (WHO) in 1998. EFSA was also asked to assess the impact on total dioxin levels of using toxicity values set out in WHO recommendations from 2005, which downgraded the relative toxicity of certain types of dioxins. The report finds that using the new values would reduce overall dioxin levels by 14%, although the extent of this reduction was very different across food and feed categories.

Finally, the report recommends continuous random testing of a sufficient number of samples in each food and feed group to ensure accurate assessments of the presence of dioxins and dioxin-like PCBs.

Author; EFSA, EFSA publishes European overview of dioxin levels in food and feed, March 31, 2010

• Full Report
• Results of the monitoring of dioxin levels in food and feed
• European Commission – Food Contaminants – Dioxins and PCBs

Yale scientists show how bisphenol A induces epigenetic changes in pregnant mice that cause hormonal imbalance in the later life of female progeny

Here’s more evidence that “safe” plastics are not as safe as once presumed: New research published online in The FASEB Journal suggests that exposure to Bisphenol A (BPA) during pregnancy leads to epigenetic changes that may cause permanent reproduction problems for female offspring. BPA, a common component of plastics used to contain food, is a type of estrogen that is ubiquitous in the environment.

“Exposure to BPA may be harmful during pregnancy; this exposure may permanently affect the fetus,” said Hugh S. Taylor, Ph.D., co-author of the study from Yale University School of Medicine in New Haven, Connecticut. “We need to better identify the effects of environmental contaminants on not just crude measures such as birth defects, but also their effect in causing more subtle developmental errors.”

Taylor and colleagues made this discovery by exposing fetal mice to BPA during pregnancy and examining gene expression and DNA in the uteruses of female fetuses. Results showed that BPA exposure permanently affected the uterus by decreasing regulation of gene expression. These epigenetic changes caused the mice to over-respond to estrogen throughout adulthood, long after the BPA exposure. This suggests that early exposure to BPA genetically “programmed” the uterus to be hyper-responsive to estrogen. Extreme estrogen sensitivity can lead to fertility problems, advanced puberty, altered mammary development and reproductive function, as well as a variety of hormone-related cancers. BPA has been widely used in plastics and other materials. Examples include use in water bottles, baby bottles, epoxy resins used to coat food cans, and dental sealants.

“The BPA baby bottle scare may be only the tip of the iceberg.” said Gerald Weissmann, M.D., Editor-in-Chief of The FASEB Journal. “Remember how diethylstilbestrol (DES) caused birth defects and cancers in young women whose mothers were given such hormones during pregnancy. We’d better watch out for BPA, which seems to carry similar epigenetic risks across the generations. ”

Author: FASEB* – Federation of American Societies for Experimental Biology, Why BPA leached from ‘safe’ plastics may damage health of female offspring, 25-Feb-2010.

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* FASEB comprises 23 societies with more than 90,000 members, making it the largest coalition of biomedical research associations in the United States

During our lives we suffer several metamorphoses, some are painful, others are positive, chosen or not. The experience, the life itself, makes us change and evolve.

My story is not different, although my most radical metamorphosis was when I fell ill with Multiple Chemical Sensitivity. But although I got sick suddenly, the process itself happened slowly. I was preparing for MCS for many years before I was aware of it. My body was warning me repeatedly without my understanding what it wanted to tell me. But how could I know that everything happening to me was the prelude to MCS? It’s almost impossible to know since information about MCS is kept secret from the public and when anyone dares to raise a voice, they are automatically silenced by those who say MCS is all in the minds of the patients.

It’s not easy to understand what happens to you as you search for a diagnosis, all the while trying not to fail during the long journey while you are riddled with attempts to damage your self-esteem as you struggle with a more diminished health status every day. The last stage of this particular metamorphosis happens when you finally know what it is happening: you have MCS. And then you start to reconsider the life you have known before in order to adapt yourself and to survive into the future.

All of us have gone through the stage of crying over things that we have lost, to hate what we have become. Where is that tireless and impulsive person who took the world by storm? It’s a natural, healthy and necessary stage. But oddly, then comes the most difficult thing: to find our place in this new world in which we’re doomed to live.

And surprisingly, when I thought that my life couldn’t be more foreseeable and monotonous, from the prison that my house has become, another metamorphosis started, this time deeper and visceral. This time my metamorphosis was chosen.

The need to communicate, to let the world know that I’m still alive, to cry out for my own rights and the rights of millions of people who suffer MCS in the whole world, led me to write. My timid voice started to be heard on my blog, No Fun, and then gathered strength thanks to Delirio’s articles, which were translated into several languages. And the first of them, “The Naked Truth about MCS,” was read on the Spanish Radio 3 program Carne Cruda. It was then that I finally dared to do something I had never imagined I would ever do: to write a book.

The extremely reserved person that I used to be has disappeared, in order to be able to tell my story to the world, as I dig into the deepest places of my being. Missing: A Life Broken by Multiple Chemical Sensitivity is a fulfilled wish as I report the situation in which we live. It’s my metamorphosis inside the metamorphosis of living with MCS. It’s my testimony, my life, my reflections. It’s also my contribution to the fight we’re doing at an international level to have MCS fully recognized. My book is the clearest proof that MCS didn’t take away my essence or my attitude; MCS didn’t steal my dreams but rather it changed my dreams so that I could help others.

My wish is that a lot of books will be written by people who are “missing” because of MCS so that the public knows we exist. We are ill, but no one will silence us.

Author: Eva Caballé / No Fun Blog, published at Delirio 2010.

Translation: Oscar Varona (from Delirio’s team) and Eva Caballé with help from Susie Collins.

Japanese and German versions are following soon.

Related Articles:

• Interview with Eva Caballé about Multiple Chemical Sensitivities and about her Book
• Naked Truth about MCS
• Meeting betweenMinistry of Health and Multiple Chemical Sensitivity Associations in Spain

Yesterday (Feb 2, 2010), in an independent student newspaper from the University of New Hampshire, a professor of chemical engineering appealed to the community to take “Canaries” into account regarding the use of chemicals and especially scents. He spoke of those persons who suffer from Chemical Sensitivity and who have to be seen – like those former canaries in mines – as indicators for toxic chemicals.

Some American and Canadian Universities have a “Scent Free Policy” which means that the use of perfumes and products containing scents is prohibited within these Universities. All visitors have to meet this policy. It allows students with allergy and chemical sensitivity to work and study.

Professor Ihab Farag, Chemical Engineering Department:

Many of us are familiar with canaries, the beautiful, colorful birds that tend to sing most of the time. Canaries also saved many human lives in coalmines. This is because canaries are much more sensitive to toxic gases than humans. Miners would take canaries with them in the coalmine. If the canary stopped singing and fell (or died), the miners knew to leave the coal mine quickly to safety.

There are individuals who have developed a very strong sensitivity to many common chemicals. These people can be very negatively affected and irritated by fumes, chemical cleaners, disinfectants, cigarette/cigar smoke, engine exhaust, solvents, etc. These people are often called “Human Canaries” of the modern world, because of the chemical sensitivity similarity to that of Canaries. Human Canaries of the 21st century tend to be very strongly irritated by everyday chemicals like perfumes, hair products, shampoos, shower gels, after shave lotions, antiperspirants, deodorants, hand sanitizers, chap sticks, finger nail polish, etc. Human canaries look the same as other people, and when you see one you probably will not recognize he or she is a human canary until an offensive toxic chemical triggers his or her sensitivity.

Please be considerate to human canaries and help them to enjoy life to the fullest. One way you can help the human canary and at the same time lower your exposure to undesirable chemicals, is to go fragrance-free: avoiding perfumes, and fragranced personal care products.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, February 2, 2009

Reference:

Chemical consideration to the Human Canaries, Ihab Farag, Professor, Chemical Engineering Department, Letter to the editor 02-02-10, The New Hampshire, Independent Student Newspaper at the University of New Hampshire since 1911, Februar 2, 2010