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

Open Letter: Perfumed Stamps Constrain People with Disabilities

Postage stamps with aroma could affect the health of sensitive people


On January 7th, German Minister of Finance, Dr.Schaeuble, presented the new charity postage stamps to Federal President Horst Koehler and Ms. Donata Freifrau Schenck zu Schweinsberg, President of the Bundesarbeitsgemeinschaft der Freien Wohlfahrtspflege (a federal association of welfare organizations). The unique feature of these stamps for this year is: They are fruit scented – blueberry, strawberry, lemon and apple. The scenting agents are micro-encapsulated and are not supposed to be released until they are rubbed.

The perfumed stamps release a scent even without being rubbed

CSN wanted to know whether the stamps really do not smell until being rubbed and arranged to get samples of the scented stamps. As we asked to buy the new charity stamps, the lady behind the post office counter pulled out an extra folder and remarked almost devoutly, “Oh yes, this are the new perfumy stamps.” She took out a sheet of stamps which showed blueberries and delightedly announced: “Wow, these really can be smelled without rubbing!”

Two welfare stamps were purchased by CSN and examined carefully. Both stamps give off a smell without being rubbed with the finger. Strictly speaking, the strawberry-stamp emits the smell of a cheap toothpaste with strawberry flavor, and the odor of the lemon stamps are a reminder of a toilet cleaner with an artificial lemon aroma. It smells nothing like a natural fruit aroma. The lemon scent grew stronger after the stamp was left at room temperature for a short while. CSN refused to activate the odor by rubbing. It can be assumed that the smell of the stamps will grow by the inevitable friction of the letters during transport and by running them through the sorting system at the postal hubs. Therefore it is quite possible that the perfumed stamps will contaminate other mail.

CSN would like to know if the applied scents were tested for their health compatibility, and which safety criteria and methods they used for the tests. Was their safety criteria the tolerable toxic load for an average healthy adult or was it the tolerable toxic load for the weakest, i.e. for an embryo? Did they test the plain aroma agents or the printing ink equipped with the aroma? Has the material of the stamp an effect on the compatibility? The information of the Bundesdruckerei (German federal printing press) suggests that first amounts of the scents were emitted before even the printing process was completed.

People with asthma, allergy to scents, sensitivities to chemicals, and persons who respond severely to scents could be affected by this advertising stunt.

As an answer, at January 11, CSN wrote the following open letter:


Perfumed Postage Stamps Constrain People with Disabilities

Dear Mr. Federal President Dr. Horst Koehler,

Dear Ms. Frau Donata Freifrau Schenck zu Schweinsberg,

Dear Dr. Wolfgang Schaeuble,

On January 7th, you shared the presentation of the new charity stamps issued by the Ministry of Finance, which emit scents of apple, strawberry, blueberry and lemon when rubbed. We want you to think about that at first glance simpatico idea, and we politely request you Dr. Schaeuble, to withdraw these postage stamps from circulation as Minister of Finance, because there are groups of people with certain disabilities and health disorders, who would be at risk if exposed to these scents.

Wouldn’t it be ironic, if some of those people who should benefit from these charity stamps will be harmed, by putting them in circulation? Do you realize the critical position of the German Federal Environmental Agency (UBA/Umweltbundesamt) regarding scents? The UBA points out that scented products should be avoided in public areas. The German coalition for allergies and asthma the DAAB (Deutscher Allergie- und Asthmabund e.V.) assumes about 11 percent of general population, that was actually a good nine million cases, affected by olfactory hypersensitivity for scents (according to Meggs et al. 1996). They postulate warning signs for scented rooms.

Is it appropriate to characterize those as people with disabilities who respond to scents with health troubles?

According to the ‘Americans with Disabilities Act’ (ADA), an individual with a disability is defined as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.

The ‘Convention on the Rights of Persons with Disabilities’ (UN-convention) which was signed by the German government on March 30, 2007, defines persons with disabilities as those, who have long-term physical, mental, intellectual or sensory impairments which may hinder their full and effective participation in society on an equal basis with others.

Perfumed postage stamps limit the lifestyle of allergic, asthmatic, chemically diseased and other sensitive persons in an unreasonable way. This violates the UN-convention and does not meet the protection criteria set out for people with disabilities as outlined by the ADA. Severe sensitive cases and those who suffer from contact allergies caused by scents don’t even need to smell traces of those contaminants. Unsuspecting they will contaminate their living space which often is prepared safe from toxins under difficult financial conditions.

Thus far, people with health impairments from scents were able to at least receive and open their mail without help from others. This autonomy and normality of life is taken away from them. If someone encounters physical reactions by being exposed to scents, he/she will become unable to receive mail any longer and has to depend on other people to sort this type of ‘mail bomb’ out. Possibly a whole delivery is lost because one single letter with a perfumed postage stamp has contaminated all other mail.

During the Christmas season of 2004 there was a similar campaign with perfumed scratch stickers. Contrary to the statement of a German mail service personnel, the scents are not securely locked in the ink. None can be sure that somebody rubs the stamps on the dispatch or mechanical interaction will release these substances. At that time when the mail arrived it was already fragrant and it will be again this time.

Potentially such deliveries could sensitize people who have not suffered from an allergy yet. Have the applied scents adequately been tested for that risk? Would you bet your life on their harmlessness? Did you know that most of the scents used in Germany are not tested for tolerance? According to the “Special Report on Allergies, 2000″ (“Spezialbericht Allergien, 2000″) by the German Federal Government, there are about 15 to 25 percent of general population affected by an atopic disease, that was over 20 million cases, and one-third are sensitized for allergies, that was about 27 million. Should not everything be done, to keep this data from growing?

Scents trigger a variety of physical reactions for people with this sensitivity. Depending on disease and state of health, they range from harmless irritations to life threatening conditions. The following troubles can be caused individually or in combinations:

Tiredness, sneezing, irritated eyes, redness, itching, blisters, inflammations, swelling and burning of the lips, nasal mucosa burning, burning of the tongue, toothache, cough, voice failure, labored breathing, vertigo, sickness, headache, migraine, speech disorder, disturbance of memory, permanent painful vomiting, cardialgia, tachycardia, state of shock, absence, coma.

Often, such an incident increases the sensitivity for other substances or undoes a recovery which was hardly achieved by a strategy of avoidance and healthy living over a long period.

If nothing else, artificial scents could disturb the aesthetic perception of healthy ones and never reach the sensuality of their prototypes. Lay some apples from an organic farmer in your bedroom and compare it with the odor from these stamps.

Considering all of the above, we request, that the health damage which may be expected for those people in the general population who are sensitized by scents be recognized and, as under the terms of the Convention on the Rights of Persons with Disabilities, that the circulation of these perfumed postage stamps be immediately stopped.

Kind regards,

Silvia K. Mueller, Bruno Zacke

CSN – Chemical Sensitivity Network

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We thank Christi and Jim for translation help.

Medicine needs Shift in Paradigm to focus on Environmental Medicine

Newspaper reports of chemically sensitive man

It took eight years until a doctor was able to make a correct diagnosis

The German newspaper Rheinische Post, one of the most noted papers in the Lower Rhine region, published an article about a man who hopped from doctor to doctor for eight years, until he finally got the right diagnosis. He responded to nearly all chemicals, even in lowest concentrations, which are almost omnipresent in everyday life. This was dismissed as mental problem for years. Then at last, the man from Rhineland received the proper diagnosis from a South-German physician: MCS – Chemical Sensitivity. If there was more focus on environmental medicine, cases like this current from the Rheinische Post, were avoidable.

Although he had physical troubles, he was told his problem was psychological

Ralf T. did a lot of sports until he developed more and more allergies. In addition to allergies, he experienced an increasing number of troubles, but no doctor could make a correct diagnosis and find the reason. The Rheinische Post lists the symptoms: “breathing problems, chronic fatigue, burn out, nausea, headache and many more”.

Cause of the disease: toxic adhesive

The graduate in sport science was a trainer in a fitness studio. An adhesive which was used to glue the flooring in his apartment ruined his health. It caused gas emissions of toxic chemicals which according to the Rheinische Post injured his immune system.

No help from the German obligatory health insurance

Now Ralf T. has to live in isolation and manage without money too. He would like to arrange his living environment to be toxic free to improve his health. But the attitude of the health insurance prevents such efforts. The Rheinische Post reports that the 52 year old wasn’t granted even basic things like a special bed. The insurance just hides behind regulations. There are no considerations what is indispensable to life for this man with environmental illness. He lacks any strength to resist.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, January 4, 9010

Translation: BrunO

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