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.

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

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:

• Meeting between Ministry of Health and Multiple Chemical Sensitivity Associations in Spain
• How to become a MCS Activist in less than 365 days? Have a look to 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.

• ACAF: Cristina Montané
• AFCISQUIM: María Roldán
• Alas de Mariposa- SQM: Tránsito Rodríguez
• ALTEA – SQM: Cristobalina Bejarano
• APQUIRA: Mª Carmen Gómez de Bonilla
• AQUA: Mario Arias
• ASQUIFYDE: Francisca Gutiérrez
• AVASFASEM-AVASQ: Francisca García
• ENA: Laura Domínguez
• MERCURIADOS: Mª Carmen Miravete
• Plataforma Estatal Contra la Contaminación Ambiental: Minerva Palomar
• PLATAFORMA PARA LA FM ,SFC, SQM, reivindicación de derechos, Asociación Nacional: Elena Navarro

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

• ABAF: Margarita Pascual
• ACAF: Maite Ribera
• AFCISQUIM: María Roldán
• Alas de Mariposa- SQM: Irene Escudero
• ALTEA – SQM: Cristobalina Bejarano
• APQUIRA: Mª Carmen Gómez de Bonilla
• AQUA: Mario Arias
• ASQUIFYDE: Francisca Gutiérrez
• AVASFASEM-AVASQ: Francisca García
• ENA: Rosa de Gabriel
• MERCURIADOS: Servando Pérez
• Plataforma Estatal Contra la Contaminación Ambiental: Minerva Palomar
• PLATAFORMA PARA LA FM ,SFC, SQM, reivindicación de derechos, Asociación Nacional: Elena Navarro
• Eva Caballé

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

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:

• Multiple Chemical Sensitivity, A 1999 Consensus, Archives of Environmental Health, May/June 1999, Vol. 54, No. 3, pp. 147-149
• An Italian law proposal for Environmental Illness and Disability
• Research on Multiple Chemical Sensitivity – MCS
• MCS is recognized as physical disease at ICD-10 in Japan
• Department of Health of the Austraian Government recognizes MCS as a physical disease

The links to the law proposals:

At the Chamber of Deputies

• On. Domenico Scilipoti (IdV) (still not published)
• On. Donella MATTESINI (PD)
• On. Silvana MURA  (IdV)
• On. Mariella  Bocciardo PdL (still not published)
• On. Annagrazia CALABRIA PdL
• On. Maurizio BERNARDO PdL

At the Senato

• Sen. Roberto DELLA SETA PD
• Sen. Alberto Balboni (PdL)
• Sen. Adriana Poli Bortone (PdL)
• On. Giorgio Jannone parliamentary interpellation about MCS

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:

• Original post in Spanish and English by Eva Caballé at No Fun Blogspot
• Post translated into German by Silvia K. Müller and published at CSN Blog
• Post translated into Japanese by Takeshi Yasuma and published at Citizens Against Chemicals Pollution website (October 7, 2009).
• Post linked at The Canary Report (October 8, 2009).