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.

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METAMORPHOSIS INSIDE MULTIPLE CHEMICAL SENSITIVITY

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.

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Meeting between Ministry of Health and Multiple Chemical Sensitivity associations in Spain

On February 4th 2010 at 12:00h has been held the meeting with Ministry of Health to state the situation of Multiple Chemical Sensitivity sufferers in Spain.

Mr José Martínez Olmos, Secretary General of the Ministry of Health, Mr Alberto Infante Campos, General Director of Professional Planning, Cohesion of SNS and High Inspection and Mr Francisco Valero Bonilla have attended to the meeting representing the Ministry of Health. One person by almost each MCS association has attended to the meeting and also Jaume Cortés, lawyer of Colectivo Ronda, and Dr. Pablo Arnold, immunologist specialized in MCS.

A petitions document done by MCS associations under David Palma coordination has been submitted. This document has been signed by:

Also a copy of Desaparecida: Una vida rota por la Sensibilidad Química Múltiple (Missing: A life broken by Multiple Chemical Sensitivities) has been hand delivered on behalf of Eva Caballé, who couldn’t attend to the meeting, as an example of what MCS sufferers have to go through in Spain.

The meeting with Ministry of Health has meant an agreement on minimum standards by the Ministry, but a big hope for all MCS sufferers.

Representatives of Ministry of Health have committed to contact MCS associations within 2 weeks to jointly agree on experts to form a Scientific Committee to create a document of consensus on the MCS. They have 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. They have demonstrated that later there would be necessary to start creating the guidelines.

All people who have been part of this process are thrilled by the result of the meeting, because doors have opened us to obtain the recognition of the Multiple Chemical Sensibility in Spain and to achieve that MCS sufferers have the same rights as the other chronically ill people.

Authors: Eva Caballé, David Palma, NoFun, February 4, 2010

Italian Parties united under the MCS cause

Italy - Chemical Sensitivity - victims need help and protection

At the beginning of 2006 AMICA wrote to all the Members of Parliament asking for a law to recognize Multiple Chemical Sensitivity (MCS) as a Public Health Illness. The idea came after this kind of recognition was given to the Celiac Disease. If people with such severe food intolerance could have a special law for their problems, why shouldn’t MCS have the same, since it is so similar, widespread and life-limitating?

Paolo Cento from Parito dei Verdi (Green Party) replied and invited AMICA to work together in writing a law proposal. Thus, the first law for MCS was presented in June 2006, posing a first step towards the MCS recognition.

At that time three Regional Parliaments (Tuscany, Emilia-Romagna, Abruzzo) had already recognized MCS as a rare disease, but the doctors nominated by two Regional Administrations in the MCS Commission didn’t want to make diagnoses, claiming that “there isn’t enough evidence about MCS” Even though the existence of an International Consensus about MCS diagnostic criteria, they planned an observational study to find new criteria, so the ill people were in fact left without a proper diagnosis and treatment.

In the meantime, the Superior Institute for Health (ISS), a public health agency, created an inter-regional Commission aimed to prepare a position paper about MCS that the Supreme Council of Health (CSS), the scientific arm of the Ministry of Health, should then review and sign. In September 2008 the CSS released the final MCS document claiming that “MCS can not be recognized as an illness due to lack of evidence and the absence of an univocal diagnostic test”. MCS activists know well this old story.

The inter-regional ISS Commission paper, in fact, quoted several studies by researchers with industry ties and also the presumed WHO-IPCS consensus of Berlin in 1996. The famous book about MCS written by the major experts, Nicholas Ashford and Claudia Miller, clearly explain that there isn’t any WHO-IPCS Consensus.

Thus, AMICA wrote again to the Parliament Members asking for an investigation about the ISS and CSS position papers that didn’t consider important scientific references about MCS. The Member of Chamber of Deputies Giorgio Jannone asked to the Ministry of Health, with a parliamentary interpellation, why the inter-regional commission was made mainly by occupational doctors even if MCS is also a pediatric illness. There is still no answer.

Actually, the Italian occupational doctors were prohibited to make MCS diagnoses since 2005 when their professional organization released a strong anti-MCS position paper, claiming that to make MCS diagnoses and to study MCS is a waste of money and time.

The only hope for MCS recognition in Italy lays in the hands of politics and AMICA worked well with members from all the political parties. Today there are, in fact, five proposals by Partito della Libertà (Liberty Party) and four proposals by the opponent parties, Partito Domocratico (Democratic Party) and Italia dei Valori (the Italian Party of Values).

Only in December three new law proposals were presented. Among them, the one by On. Domenico Scilipoti (IdV) is quite new because it considers AMICA’s request for a more wide recognition of Environmental Illnesses and Disability. The law is addressed to those people whose survival and quality of life depend not much on drugs, but on avoiding certain environmental factors.

The most common Environmental Illnesses are: MCS, involving a loss of tolerance of chemicals; Electromagnetic Hyper-Sensitivity (EHS), forcing the affected ones to get far from electromagnetic fields emitted by mobiles, Wi-Fi, electric cables, etc.

Moreover, Fibromyalgia and CFS patients usually suffer from chemical intolerances and scientific evidence suggests that avoiding chemicals improve these conditions. Autism, epilepsy, migraine and lupus involve reactions to fluorescent lighting. But there are also several other conditions, even not originally caused by the environment, that present reactions to a certain environmental quality, such as the genetic favism, which causes serious reactions to legumes and forces the one affected to an avoiding protocol.

A representative of the Green Party of the Region Tuscany wrote today to AMICA to say that they will present this law proposal for Environmental Disability to the Regional Commission for Health and, hopefully, there might be a regional law as well.

Author: Francesca Romana Orlando, Journalist and Vice President of AMICA, 29th December 2009

Associazione Malattie da Intossicazione Cronica e/o Ambientale

(Association for Environmental and Chronic Toxic Injury)

www.infoamica.it


Related articles:

The links to the law proposals:

At the Chamber of Deputies

At the Senato

A Guest with Chemical Sensitivity on German Stern-TV Tells What She Experienced during and after the Live Show

Coretta- Vetenarian with Chemical SensitivityThe veterinarian Coretta Danzer is sensitive to chemicals. She reacts to common household chemicals with various physical symptoms. In medicine this illness is called MCS – Multiple Chemical Sensitivity. It occurs specifically in industrialized countries and according to studies it affects about 15 to 30 percent of the general population in different degrees of severity. In spite of that, the disease is little discussed in public. This was the decisive reason that Coretta Danzer agreed to talk in common with the environmental medicine expert Klaus Runow, M.D. in the popular television show Stern-TV about this environmentally-caused illness. In the live broadcasting with Guenther Jauch a film feature was shown to the audience for better understanding. It provided an insight into what it means to have to live with MCS. As expected, remaining in the TV-studio was not easy for Coretta Danzer. Below, the veterinarian reports what discomfort it caused her and how she is doing now.

Coretta Danzer’s guest appearance at the studio:

Finally we had to be in Huerth near Cologne on Wednesday 12-09-2009 at about 9 p.m. My husband and me, we went by our own car, because it is impossible for me to go by train. On arrival, we rang up the editorial office for someone to come for us. A pretty neat young lady led us to the backdoor of the building in order to limit my exposure to irritants to the lowest level. However and needless to say, somebody was smoking just in front of the rear entrance and this was my first trouble.

A TV-studio is not really the best place for MCS-sufferers

We reached the room that was prepared for me at the first floor through the staircase. The corridor and the room was carpeted with needle felt and my prompt reactions suggested that it probably was treated with pesticides. I came in and took my mask from my nose and with every fourth or fifth word my voice vanished, I could only caw raspy sounds and had a terrible sore throat. That’s my standard reaction to pesticides. Immediately we opened the windows and I took my oxygen, which made my voice come back after a while, but still left me the sore throat. A toilet was individually reserved for me and perhaps it was cleaned with plain hot water, but unfortunately it still smelled of “toilet chemistry”.

Nice reception

Then the kind female reporter who visited us at home also appeared and said welcome. Just for me she had washed her clothes and herself without fragrances. Again she explained the procedure to us a bit and introduced us to Mr. Runow, whom we didn’t know before. Next Mr. Jauch came to us and invited us to a dinner after the show, which I politely declined at the same moment, because I was sure, I was unable to manage that.

What MCS really is didn’t matter

Mr. Runow announced to the show master Mr. Jauch, what he intended to explain to the audience. He planed to present magic tree air fresheners and to demonstrate with an cranium cross section what’s going on in the brain if you have MCS. But Mr. Jauch didn’t like that and explained to Mr. Runow, that he is not allowed to do this. We all were somehow puzzled.

A “glass box” to guard me against chemical substances in the studio

Me and my husband, we were invited to the studio before the broadcasting, to test an ad hoc acrylic glass case. When I stepped into the studio, I though I will never get over this. I had not expected it to be so bad. Plastics and other things I could not define stank terribly. The acrylic glass box had a massive smell of synthetics, it made me cough heavily and I developed a strong headache, my head was really swimming and I felt so dizzy. I rendered my audition inside the box and after that we left as quickly as possible for the recreation room. I was glad to have my oxygen, because without it I could not have survived this.

In face of promises the MCS item was postponed

Now they told us that we were scheduled for 11:30 p.m. I already was so wiped out that I even was unable to protest, because I was promised to be the first or at least the second item, to keep me from long wait. So we sat about more than two hours in the room, with windows open and without heating, as I could not tolerate the smell of the hot radiators.

Hardly endurable physical stress

They called us to the studio on the commercial break before our turn. As I did before, I protected myself passing through the halls and stairways with my charcoal-mask and in the acrylic glass case I applied my oxygen to avoid coughing. The stink inside the box was as bad, but outside it was even worse. I allocated all my power and tried to concentrate as well as possible to answer all questions well. It was very, very straining. My head felt like it would burst, my eyes burnt like fire, as did my throat and my bronchial tubes. I felt dizzy and bad. I did not know what I was able to, not at all. I was glad when our contribution was over. But I had to wait in the box until the end of the following item, before we were allowed to leave the studio. Once again we went to the recreation room to pick up our togs and to to say goodbye and we drove home instantly.

It takes its toll to explain MCS

Two weeks after the broadcasting I am still symptomatic. Every once a while I still taste this disgusting flavor of plastics and I’m even more sensitive than I was before the show.

I received many emails and letters which I still have not answered completely, as I’m lacking the power to focus long enough on writing the answers. But I shall deal with answering them all.

To write this report took a lot out of me as well. But I will be pleased to answer more particular questions about the broadcasting.

Authors: Silvia K. Mueller and Coretta Danzer, CSN – Chemical Sensitivity Network, December 22, 2009

Translation: BrunO for CSN

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Please write your opinion to Stern-TV:

Use the online form:

http://www.stern.de/tv/about/kontakt-e-mail-an-stern-tv-512593.html

Use your mother language and keep a civil tongue in your head.

Subject (Betreff): About MCS Dec. 12, 2009