Archive for category ‘Chemical Sensitivity, MCS‘

Spanish Workgroup met with Ministry of Health to create a MCS Consensus Dokument

Carne Cruda gives the scoop on the meeting of the working group to create a document of consensus on the Multiple Chemical Sensitivity in Spain held in the Ministry of Health on April 21th 2010

“I’m your fan”. This was the title of the post in the blog of Carne Cruda, Spanish radio program, on October 22th where they asked people about their favorites songs. José Luís Aparicio posted a comment with his 10 favorite’s songs and the last one he chose was “No Fun” by The Stooges. But his choice went beyond the music, and, as he explained, he chose “No Fun” because my blog was named after this song. He also explained what MCS is (illness that he also suffers) and he asked Carne Cruda to talk about MCS and he also mentioned the interview that Salvador L. Arnal did with me for Rebelión.

4 days after I received an invitation from Carne Cruda through the editorial El Viejo Topo to interview me to talk about Multiple Chemical Sensitivity.

On November 2009 4th I was interviewed on Carne Cruda and I met José Luís Aparicio. They were so shocked by MCS that next day the show’s director explained during the radio show that they would contact the Ministry of Health because they wanted to interview the Minister of Health in their show and talk about MCS and to explain to them the terrible situation of the MCS sufferers.

This is how all this started. After a lot of calls to the Ministry of Health without receiving any response, last December they did a live phone call during the radio show and they finally had to accept. On January 15th 2010 José Martínez Olmos, the Secretary General of the Ministry of Health, was interviewed on “Carne Cruda, in a special show devoted to Multiple Chemical Sensitivity with Miguel Jara, Dr. Pablo Arnold, José Luís Aparicio and David Palma on behalf of me. He made the public commitment to meet with associations that deal with MCS between ten and twenty days after the show.

On February 4th 2010 was held the meeting with Ministry of Health to state the situation of Multiple Chemical Sensitivity sufferers in Spain. A petitions document done by MCS associations under David Palma’s coordination was submitted. One person by each MCS association attended to the meeting and also Jaume Cortés, lawyer of Colectivo Ronda, and Dr. Pablo Arnold. Also a copy of “Desaparecida: Una vida rota por la Sensibilidad Química Múltiple (Missing: A life broken by Multiple Chemical Sensitivity)” was hand delivered on behalf of me, as an example of what MCS sufferers have to go through in Spain. Representatives of Ministry of Health committed to contact MCS associations to jointly agree on experts to form a Scientific Committee to create a document of consensus on the MCS.

Then the 13 MCS associations set up the “Comité para el Reconocimiento del Síndrome de Sensibilidad Química Múltiple” (committee for the recognition of MCS in Spain) to have an unanimous voice for this process. The committee elaborated the list of doctors and the Ministry of Health invited all the 11 doctors nominated by the associations and 16 people from the Ministry of Health, between doctors and consultants, to attend to a meeting on April 21th 2010.

The first impression is positive. The working group elaborated the schedule and they agreed to create a draft of the document of consensus on the MCS to be review by MCS associations in September/October 2010. The reviewed document will be published by the Ministry of Health in December. They stated that this is the first step to make possible the inclusion of the MCS in ICD-10, i.e. its official recognition as disease in Spain.

It will be published an official press release but the day after the meeting, Carne Cruda gave the scoop, since is thanks to Carne Cruda that we are in this process and we wanted to give them our gratitude. David and I gave this great news during the program and Javier Gallego, the director and host of Carne Cruda, was really moved.

Thanks to José Luís Aparicio and special thanks to all the team of Carne Cruda, led by Javier Gallego, because if they wouldn’t have been interested in MCS, this would never have happened. I told them during the program, but I want to repeat again here:

Thanks in the name of all people with MCS!

Translated by Eva Caballé.

-

CSN says thank you to Eva for the permission to reprint!

Dreams That Kill

Masses

Choke

Slowly

We are not allowed to stop dreaming. Dreams we have not chosen. Dreams that are sold to us as indispensible for our happiness. And we sleep carefree and dream. We dream and we buy to be able to sleep and to keep dreaming about more stuff. We sleep deeply warmed by the glow of the robotized masses, heads full of dreams that don’t allow rest.

Don’t even dare to stop having sweet empty dreams. Don’t even dare to stop breathing deeply and find yourself lost in the nightmare of other’s dreams, without being able to wake up; in a world that burns you and locks you into an illness that only allows you to dream that your nightmares disappear.

Tonight you will go to sleep satisfied, snuggled up to your soft-skinned, seductively perfumed life, where everything is inoffensive and perfect. Your dreams will, once more, banish me to the hidden side of the world, where light pierces and sound scorches the nerves, where dreams become a cruel poison that slowly kills me and drags me from nightmare to nightmare with no way out.

Your toxic dreams bury my existence under a stone slab made up of three words: Multiple Chemical Sensitivity. Your world of ideal dreams sentences me to live jailed.

Wake up from the heavy dream in which you are sinking us so that you and I can dream that we actually live, a real dream; so that no more will anyone see their dreams turned into the torture of a merciless illness.

Author: Eva Caballé for Delirio, April 2010

Photo: Aida/Delirio

More articles from Eva Caballé for Deliro:

First meeting of the working group to create a Consensus Document about Multiple Chemical Sensitivity in Spain

April 21th 2010 will be held the first meeting of the working group to create a document of consensus on the Multiple Chemical Sensitivity in Spain

As you probably know, on February 4th 2010 was held the meeting between represent-atives of Ministry of Health and associations that deal with Multiple Chemical Sensitivity to state the situation of MCS in Spain. In that meeting the representatives of Ministry of Health committed to contact MCS associations to jointly agree on experts to form a Scientific Committee to create a document of consensus on the MCS. They stated that this would the first step to make possible the inclusion of the MCS in ICD-10, i.e. its official recognition as disease in Spain.

During last months, the associations have been working on the list of doctors that would be part of the working group. This list was submitted to the Ministry of Health few weeks ago.

The Ministry of Health has already set a date to hold this meeting: April 21th 2010 and it’s scheduled to last 4 hours. 11 (*) doctors nominated by the associations and 16 people from the Ministry of Health, between doctors and consultants, will attend to this meeting.

I want to thank all MCS associations for their work choosing the doctors and I also want to congratulate them for set up the “Comité para el Reconocimiento del Síndrome de Sensibilidad Química Múltiple” (committee for the recognition of MCS in Spain) for this process. And I specially want to thank all doctors who are going to be part of the MCS working group for their commitment, which has already been more than enough shown during years of work supporting people with MCS. I want to give them all our support in this process that has just now started, because all MCS sufferers and relatives have our hopes pinned on it.

Translation: Eva Caballé, No Fun, April 2010

(*) Update April 13th: finally will attend to the meeting 11 doctors nominated by Associations, because the Ministry of Health has agreed to include 2 doctors who have been previously dismissed.

Related Articles:

Rehab Center said – bring a Wheelchair when you pick him up

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:

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

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