Environmental Medicine Matters » Eva Caballé

Environmental Diseases: To understand or ignore

Silvia — Wed, 09 Mar 2011 15:53:35 +0000

This is Eva’s contribution about the cinema published in the magazine Delirio that she has translated into English. The script about toxics and Multiple Chemical Sensitivity is entitled “Rear Window” and it’s a tribute to the great filmmaker Alfred Hitchcock. The photos, as usual, are made by David Palma.

Eva recommends this number of the magazine Delirio dedicated to the cinema because you will find amazing photographs and illustrations.

Rear Window

By Eva Caballé

The room is almost empty; nothing but a bed and an old bedside table without any decor or curtain, all in light colors. It seems calm and quiet. The woman sits on the edge of the bed in front of the window, looking at the sunlight, which is orange because of the sunset. She has a quick look out the window and then observes more carefully, stretching her neck as if she is looking for something. She turns and talks to the young woman who has just entered the room with an ironic and concerned smile.

Woman: Don’t you see how everybody is disappearing? It is no coincidence! They started to spray the park, day after day, while children were playing, and parents and grandparents sat in the sun chatting while watching them.

The young woman puts her hand to her waist with a tired look and responds, gesturing with her other hand, while she snorts, implying that she is tired of talking always about the same thing.

Young woman: You only see conspiracies; for you all is very simple. How can you be so sure if you hardly leave home? When you live through your window! Instead of spending hours writing pamphlets that I’m sure nobody reads, and taking pictures, shouldn’t you focus on your next book?

The woman’s expression becomes serious and she turns angry replying with some indignation.

Woman: But it’s obvious! It doesn’t take Sherlock Holmes! The dog of the first floor neighbors died a few days after the first fumigation. They say that he was intoxicated by something that he ate… A few days ago an ambulance took the old woman who lives upstairs in the middle of the night and she is still hospitalized, when in the 40 years I have lived here I had never seen her having a cold! And what about the children on the fourth floor? (She takes a break to breathe because she speaks so fast that she is even short of breath.) Every day I see them with their bronchodilators and every other minute in the ER! Their neighbor has cancer and since she’s having chemotherapy she can no longer tolerate perfumes and now she has to wear a mask when she walks along the street. (Now almost shouting.) They say that she has Multiple Chemical Sensitivity (MCS) and doctors don’t pay attention to her!

The woman makes faces parodying the young woman’s lecture that she already expects and knows by heart.

Young woman: You are a bit alarmist! There are only a few people who suffer from MCS; there is no need to worry. Today almost everyone has allergies or asthma. Authorities warn us that one out of every four people will have cancer in their lifetime. (Goes back and speaks from the doorway leaning on the door frame.) This is the modern life. We all have to die of something!

The woman turns and answers indignant from the bed.

Woman: And does it seem normal to you? Really? And when this affects you, will you still think the same?

The young woman finally leaves the room and her voice is heard from the hallway with a tone between weary and sarcastic.

Young woman: Well, see you next week. Do not keep on spying on your neighbors because you will end up crazy. You should amuse yourself and don’t fantasize anymore.

The woman answers raising her voice while the young woman closes the front door and leaves the house.

Woman: Don’t worry, my attitude has no solution. (And finishes angrily talking to herself.) And neither does your stupidity.

The woman is still staring out the window with indignation and with a worried face and thinks aloud.

Woman: Does anyone realize? I see everything so clearly that it scares me. Makes me want to open the window and shout it from the rooftops, but will anyone hear me? Why don’t they listen even when you alert them? (With a sarcastic tone.) Having no time and the fast pace of life sounds like cheap excuse to me. (She stands up and gets closer to the window.) It’s simple. We’ve become worse than donkeys, because it is not needed to put blinders on us to not look beyond the established road. We no longer have the instinct to do it! We are afraid of what we might see, lest we have to react. (The sun has set and she begins to close the blind.) It must be that I have no fear of looking or I have nothing to lose. It must be that my window is different…

Author: Eva Caballé, No Fun Blog, February 2011

Original article: LA VENTANA INDISCRETA, artículo sobre tóxicos y Sensibilidad Química Múltiple publicado en la revista DELIRIO

German Version at CSN Blog: Umweltkrankheiten: Hinschauen oder wegsehen?

More articles written by Eva Caballé:

New trailer for upcoming film about Multiple Chemical Sensitivity is shown at MCS conference in Spain

Silvia — Thu, 11 Nov 2010 14:08:08 +0000

Two weeks ago I introduced you the first trailer for the upcoming short film Los pájaros de la mina (The Birds in a mine), the first film made in Spain about Multiple Chemical Sensitivity, which was very well received between MCS sufferers from all around the world.

Today I want to share with you the new and powerful trailer for the film. This new trailer had its debut last week at the MCS conference organized by ASQUIFYDE, which was held at the University of Alicante, Spain. During the three days of the conference, a lot of doctors, lawyers and other specialists talked about MCS, toxics, the situation in Spain, etc. It was really great and we could follow the presentations and discussions on the Internet.

Also presented at the conference was an Environmental Control Guide (my blog No Fun is part of it) together with my video “MCS: The importance of reducing the toxic load”, which, according to Francisca Gutierrez, president of ASQUIFYDE, made a big impression on the conference attendees (medical students, press and other people related with environmental health).

For the closure of the conference, the new trailer was shown. The scriptwriter and lead actress in the film, Mariam Felipe, was there to explain the project and about how the idea for the film was sparked because of my interview on Carne Cruda (Raw Meat) one year ago. And then they showed this amazing new trailer.

The premiere of the film will be December 10th at the Teatro Principal de Pontevedra.

According to the filmmaker, Víctor Moreno, they will make a version with English subtitles, and, thanks to Silvia K. Müller, president of CSN, another version with German subtitles will be made, too.

I’m sure that this film will win a lot of awards!!

Author: Eva Caballé, No Fun Blog, November 10, 2010

Further Articles from Eva Caballé:

A book about chemical sensitivity will become a radio series in the near future

Silvia — Mon, 26 Jul 2010 19:14:09 +0000

When the book, “Missing. A Life Destroyed by Chemical Sensitivity” came into bookstores, the sales were surprisingly high. The author of this book, Eva Caballé is chemically sensitive and can exist only within the walls of her safe apartment. Several air filtering machines run day and night. She can tolerate only a few foods, and her water must be specially filtered. Visitors are not allowed into her apartment because the fragrance and detergent residues could cause her to experience a severe reaction. Despite the severity of her disease, this Spanish woman insists on enlightening the public about this condition. Her blog, NO FUN, became her mouthpiece and is read daily by thousands.

Through interviews which Eva’s husband David gave on TV, radio, and to newspapers, Eva’s story was known before her published book was on the shelves. Now her book will be made for a radio series.

Last month, David gave interviews for a radio program called “Vital Space” which discusses chronic illnesses. The program producers were enthusiastic about Eva’s book and want to make the public more aware of chemical sensitivity. Details regarding MCS are not yet well know in Spain.

The response was enormous, which led to the idea of the MCS book as a radio series.

Eva and her husband David agreed, and wrote an editorial for this series. Two professional actors, whose voices are very similar to Eva and David have been hired. A moderator has also been hired to coordinate the recordings. The whole book has been set to music and accompanied by background music. Next fall the series will begin. For each chapter there will be ten minutes of airtime available. Over a period of 21 weeks radio listeners will experience the naked truth about Multiple Chemical Sensitivity.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, July 26, 2010.

Translation: Many thanks to Christi Howarth!

Articles written by Eva Caballé:

How to become an MCS activist in less than 365 days? Have look to Spain

Silvia — Sun, 21 Mar 2010 00:06:58 +0000

People from all over the world with chemical sensitivity have understood that their illness is a matter of policy, suppressed by certain lobbyist groups and industries so as to not lose their influence and revenues. For decades, these groups have succeeded in explaining chemically caused diseases as not existing and denouncing the afflicted as mental wackos through specific propaganda. Thanks to the internet, these structures are starting to crumble. The MCS-diseased network internationally, exchange expertise and encourage each other. The possibilities offered by social networks are multiplying this. Years ago barely none of the afflicted knew someone from another country, yet today this networking has turned the world into a “village”.

Never would I have gotten in touch with Eva, a young Spanish Lady who suffers from severe chemical sensitivity, extreme nutrition intolerances and CFS. Even if I had traveled to Barcelona where she lives, I would have never been able to meet her. For the past two years she only can stay in her home, and for several months she just lies in bed all day. In defiance of her severe illness, this remarkable activist manages to make the people of her country aware that our hyper consumption of chemicals in everyday products takes its toll. Together with Susie Collins from the U.S. Canary Report, I asked Eva to report on the last few months. This wish was important to both of us, because from Eva’s report other MCS-afflicted should take heart to become active.

Nobody expects that every sufferer of chemical sensitivity will achieve as much as that which can be read in the following report. It’s even not necessary, because there are many individuals throughout the world who have the same target – the acceptance of a disease which is not allowed to be, but which can’t be kept a secret any longer.

On the other hand, “never say never”, because you possibly may be somebody who still has good ideas and guts, even if you are only able to stay in bed and lack vigor. There sleeps more potential capacity in us as we reckon by ourselves. The intention of the following report is to inspire you:

Eva Caballé:

My friends Silvia Müller and Susie Collins asked me to write about all the Multiple Chemical Sensitivity awareness events I have done since June 2009. This is a summary of all my articles, collaborations and media appearances, which I hope have helped raise MCS awareness.

As many of you know, last June, I wrote an article called “The Naked Truth about MCS” for the on-line cultural magazine Delirio, with two photos of me naked wearing nothing but a mask. The article was translated into nine different languages, thanks to Susie Collins at The Canary Report and Silvia Müller at CSN – Chemical Sensitivity Network. Since then I have contributed to each edition of Delirio with articles focused on MCS: “Screaming from the Silence” and “Metamorphosis inside MCS”, and I am now working on the next one.

Then I decided to write a book to let people know, through my personal life and experience, what it’s like living with MCS: the total abandonment that we suffer and why people should be worried about all the toxic products they use daily. I finished writing Missing: A life broken by Multiple Chemical Sensitivity at the end of August, and in November the book was published by El Viejo Topo. The book was announced when Salvador López Arnal interviewed me to talk about MCS, an interview that was then translated into English, Japanese and German, thanks to my online friends.

Thanks to “The Naked Truth about MCS,” I met a lot of interesting people from all around the world, and one of them in Japan, Takeshi Yasuma, from Citizens Against Chemicals Pollution (CACP), asked me to write a message to MCS patients and their supporters to be presented at the symposium in Celebration of the Recognition of MCS in Japan in October 2009. My message was read and displayed during the symposium.

In November, two weeks before my book was released, I was interviewed by phone at Radio 3 (National Radio in Spain), in a live culture program at prime time called Carne Cruda. For 25 minutes we talked about Multiple Chemical Sensitivity and my book, and they were so shocked that they promised me they would contact the Ministry of Health to explain to them the terrible situation of MCS sufferers. As many of you know, the Secretary General of the Ministry of Health was interviewed on air (my husband David talked to him on my behalf) and made a public commitment to meet MCS associations in Spain to listen to our claims. The meeting was held on February 4, 2010, the outcome of which was a commitment by the government to form a Scientific Committee to create a document of consensus on MCS.

At the end of November, an article about my blog No Fun was published in the youth supplement of the printed newspaper Deia. The article, entitled “Toxic Life,” was an extensive and accurate analysis of my blog (the information I provide, the translations I make, the articles I write, my collaborations, etc.), with focus on MCS and my collaborative work in the international fight for MCS awareness.

I also participated in the fabulous Canary Report 2010 wall calendar, with 14 other women from all around the world. The idea was inspired by my nude photos published at Delirio and I was very proud to be part of such an amazing project led by Susie Collins. The calendars are available for purchase and all profits are donated to the Environmental Working Group.

At the end of 2009, Salvador López Arnal interviewed me again, this time we talked more about my book and my experiences, and he also interviewed my husband David, who wrote the epilogue of my book. This interview was published in the printed magazine El Viejo Topo in January, and in February was released online.

During December 2009 and January 2010, three fabulous reviews of my book were published. The first one was published at Punts de Vista, a blog by Àngels Martínez i Castells, who is an economist and the president of Dempeus, a Catalan association in defence of public health. The second one was published at Kabila, a blog by Rafael G. Almazán, who is a journalist specializing in political and human rights. And the last one was published at the website of the environmental journalist and writer Miguel Jara.

At the end of January, another interview of me was published in the Health supplement of ABC, one of the most important printed newspapers in Spain. The interview, which was a double page and included a photograph of the cover of my book, was focused on MCS and my experiences explained in my book, but also focused on the total abandonment that people with MCS suffer. They included an MCS article written by Dr. Arnold, an immunologist specializing in MCS, which was also published at the website of the newspaper.

“El color de la tarde,” a magazine radio program on Radio Intercontinental, asked to interview me the day after the interview at ABC was published. I wasn’t able to do it because of my health condition, but they agreed to interview David on my behalf. The interview was focused on MCS and my book.

Also at the end of January, an article was published at El Observador magazine entitled “The canary of the mine.” This article, inspired by my book, was about MCS, toxics, my book, and Silent Spring by Rachel Carson. The article was written by an ecologist and it was very combative, encouraging lectors to become aware of the alarm from people with MCS. The article was finished with one paragraph of my book and the last sentence was: “Maybe so many toxic products have managed to turn us into sheep?”

In February, my book was mentioned in a literary radio program at Radio Euskadi and because of this, “La noche despierta,” another program of the same radio, asked to interview me by phone to talk about my book and MCS. My health didn’t allow me to make this interview but they agreed to interview David, my husband, because they were very shocked about my book. The interview with David at Radio Euskadi lasted 30 minutes and it was very deep and sensitive. They talked about MCS, how our government doesn’t do anything to help us and how are we doomed to live without support from social services. The journalist had an exquisite tact and the interview was moving. I answered one question that I previously recorded from bed.

In March, my book was added to the catalogue of two public libraries: Public Library of Navarra and Public library of University of Alicante. I am very excited about this because in both public libraries it’s the first book about MCS that they have.

Also in March, an interview with David was published at “La Contra,” a prestigious section of a very important printed newspaper in Spain: La Vanguardia. They wanted to interview me, but because of my health condition I couldn’t do it. The interview was about MCS and our experience and it was a great success. Because of it, another radio program has asked to interview David.

The same day of the interview at Radio 3, a Spanish filmmaker contacted me because he was shocked with the interview and he decided to make a short film to help to raise MCS awareness. He asked me to help him, because, even though the history would be fiction, he was very interested to make it as real and accurate as they can. The short film about MCS, entitled Los Pájaros de la Mina (The Birds of the Mine), has started to film in March and it’s raising much expectation, talk and press because it will be the first MCS short film in Spanish.

A national TV program called Terra Verda (Green Earth) asked me to participate in their program dedicated to toxics at home. Because of my health condition, they couldn’t come to my house but they agreed to have David record my interview with our video cam. They also asked us to show the changes we have done at home because of my MCS, and we did a second video showing all this information. This program will be aired at the end of March, and then I will post the program at my blog No Fun, along with the full-length version of both videos we recorded at home.

All this has happened in less than a year! I’m very excited about it because I could never imagine I would be able to do all this, especially when my health condition worsened. Of course I couldn’t ever do any of this without the help and support of David and all my family and friends from all around the world.

Author: Eva Caballé, No Fun, March 2010

Title Photo: Canary Report Calender 2010 – thanks to Susie for the permission

METAMORPHOSIS INSIDE MULTIPLE CHEMICAL SENSITIVITY

Silvia — Tue, 16 Feb 2010 10:19:33 +0000

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

Silvia — Sun, 08 Nov 2009 17:18:09 +0000

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

MCS – Multiple Chemical Sensitivity recognized as physical disease at ICD-10 in Japan

Silvia — Fri, 16 Oct 2009 13:22:23 +0000

Eva Caballé “Eva’s No Fun Blogspot“ from Spain reports:

Few days ago I discovered that my blog had some visitors from this Japanese website, a blog done by Prof. Masumi Yamamuro of Tokyo University. When I read this post, I discovered that it was my article “The Naked Truth about MCS” in Japanese and they mentioned that it had been translated by Citizens Against Chemicals Pollution (CACP) and I decided to write them. Takeshi Yasuma, from Citizens Against Chemicals Pollution (CACP), explained me that he found my article at The Canary Report and he immediately translated it into Japanese with the subtitle “Cry of Spanish MCS Patient’s Heart”, because he was very impressed by it. He published the Japanese version of my article in Citizens Against Chemicals Pollution website last August and also in the September issue of their monthly newsletter.

I also asked him about MCS situation in Japan, and now, with his permission, I post the part of his email where he explained it and I also reprint CACP’s mission.

Takeshi Yasuma wrote:

There is good news.

On October 1, 2009, the Medical Information System Development Center (MEDIS-DC), a subsidiary organization of Ministry of Health, Labor and Welfare (MHLW) published the revised list of ICD-10 Japanese Standard Disease Code Master in which MCS is categorized in T65.9: Toxic effect of other and unspecified substances / Toxic effect of unspecified substance.

It has been now clearly recognized in Japan that MCS is NOT a mental disease but a physical disease.

This decision is welcomed by MCS patients and their supporters and they expect the possible coverage of MCS by health insurance, but so far it remains uncertain whether or how it will change.

Patients and their supporters will take actions for calling on Japanese government to give urgent supports for MCS patients including coverage of MCS by health insurance, strengthening medical services, financial support for livelihood and provision of safer houses.

On October 31 at Tokyo, we will hold a MCS symposium celebrating the recognition and calling on Japanese government to take further measures for MCS.

CACP’s Mission:

To provide information to the public and take action necessary for protecting human health and environment from harmful chemicals based on Precautionary Principle and Environmental Justice.

Main Activities:

To issue monthly newsletter [PICO].
To issue weekly mail service.
To provide information at our website.
To publish books and booklets related to environmental health.
To propose our policies to the Japanese Government and local governments.
To hold seminars for citizens on protecting human health and environment.

I want to thank to Takeshi Yasuma for translating my article, for letting me publish all this information about MCS in Japan and also for asking me to write a message to MCS patients and their supporters to be presented at the MCS symposium. It will be an honour to me!

Author: Eva Caballé, Eva’s No Fun Blogspot

Thank you very much Eva! Big Hug, Silvia

NOTES:

The naked Truth about MCS – Multiple Chemical Sensitivity – Including Foreword about German Situation

Silvia — Sat, 04 Jul 2009 08:05:32 +0000

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