MCS stakeholders sign petition to the World Health Organization

On May 13, a petition from the WHO delegation of stakeholders from MCS and EMS patients, physicians, scientists, lawyers and journalists in Geneva will be received. The delegation will be welcomed by Dr. Maria Neira, Director General of Public Health and Environment, WHO confirms.

WHO confirmed hearing from MCS organizations

Dr. Neira will receive the relevant documents from the delegation, a bibliography regarding environmental diseases, a list of countries that already have a ICD-10 code for MCS and / or EMS, and some other relevant documents for the meeting. All documents being submitted support the science-based arguments, and finally create a mandatory basis for environmental health conditions worldwide, so that the medical care of patients can be assured.

MCS and EMS organizations sign the WHO petition

The petition, which seeks to ensure that the situation for people, who are chemically sensitive or electro-sensitive, was improved by the Spanish organization „Asquifyde”. The petition was signed by many organizations, researchers, and practitioners from around the world. The hope is that WHO will implement this petition, which would apply a consistent international code of disease (ICD) in all countries worldwide for those with Multiple Chemical Sensitivity (MCS) and electromagnetic sensitivity (EMS). This ICD code is important because it will allow patients’ doctors to give an accurate diagnosis with expected benefits from the health insurance, which already exists for other disabilities and illnesses. The existence of MCS and EMS has already been demonstrated.

In all countries, binding ICD-10 code for MCS and EMS

Currently, Japan (T65.9) and Germany (T78.4) have the ICD-10 code for MCS. Other German-speaking countries like Switzerland, Luxembourg and Austria ,through their Ministry of Health, say that in their countries the ICD-10 code for MCS, T78.4, is valid and can be used as well.

Submission of evidence to the WHO

It is possible to contribute and submit other important documents regarding the scientific aspects of MCS and EMS, to the WHO. During the next few days a PDF may be sent via e-mail to: info@asquifyde.es which is the Spanish organization. All documents received by medical experts and lawyers for environmental law will be organized in terms of their relevance and then selected for submission to the WHO.

Confirmed participation in the WHO hearing

Until May 3rd, 2011 it possible for organizations, academics, lawyers, and doctors to register for consultation with WHO in Geneva. This requires a binding confirmation take place with Asquifyde. The organization will report the final number of participants on May 3rd to Dr. Neira, after which it is appropriate to reserve a space.

WHO press conference after hearing

According to the WHO, a press conference will take place after the hearing. It will be headed by Sonia Miguel Jara and journalists. To fund this important press conference following the WHO hearing, Asquifyde and other MCS and EMS organizations, are asking anyone who is concerned about the environmental concerns of those ill from environmental factors to contribute financial support.

Help the environmentally ill

Scientists estimate that about 15-30% of the general population in industrialized countries suffer with MCS. The number of EMS stakeholders increases by the progressive expansion of mobile networks also. These people are almost without exception, without the help and support, which contradicts the international disability convention and applicable laws. Ignoring and negation of environmental diseases in recent years has led to indescribable suffering and to considerable financial losses to the economy. It is hoped that the leaders at the WHO, will respect the suffering of those patients with MCS and EMS and take seriously the international petition and act according to their stated mission which is to provide assistance to those disabled internationally.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, 2 May 2011

Translation: Christi Howarth for CSN

Related articles:

• No more discrimination for the ill
• International Conference: Environmental and chemical pollution cause health injuries and disabilities
• ALERT: Spanish Professor with chronic mercury intoxication goes on hunger strike
• The last few months of Angelika S. who was chemically sensitive
• An Italian Multiple Chemical Sensitivity Sufferer Shouts an “Inconvenient” Truth with his Death

P.A.N.D.O.R.A. NeuroEndocrineImmune (NEI) Center Resolution Approved by the New Jersey State Senate

Coral Gables, FL, July 17, 2010 –(PR.com)– Resolution SR-20 supporting the establishment of the NeuroEndocrineImmune (NEI) Center™, the first research center in the state of New Jersey and in the U.S., dedicated to understanding and treating chronic neuroendocrineimmune (NEI) illnesses which includes chronic fatigue syndrome, fibromyalgia, multiple chemical sensitivity, Gulf War Illness and other bacterial & viral infections chronic illnesses was passed unanimously by 38-0 votes by the New Jersey State Senate on June 10, 2010.

Senate Resolution (SR) 20, sponsored by Senator Christopher “Kip” Bateman (R), Senate Deputy Conference Leader, and Senator Loretta Weinberg (D), Chair of the Senate Health Committee, cited studies that an estimated 20 million American adults and children suffer with NEIDs. The economic impact and loss of worker productivity in the United States due to CFS/ME, alone, is estimated to be over $9 billion per year. Chronic illness represents 75% of all the health care costs in the U.S.

“It makes sense to locate the NEI center in New Jersey,” said Senator Weinberg. “As the nation’s medicine chest, New Jersey is home to research institutions and private businesses that can cooperate to find a cure for these debilitating diseases.”

Senator Bateman added, “I look forward to the passage of Senate Resolution 20, solidifying legislative support for the research center, and have high hopes that this will, in fact, be a great step forward toward finding answers for the sufferers of these debilitating diseases.”

Assembly Resolution 202 passes unanimously

Late last year, a similar resolution unanimously passed the New Jersey State Assembly 78-0. “Having a research center… is essential to promoting research into the etiology of, and therapeutic interventions for neuroendocrineimmune disorders (NEIDs),” according to Assembly Resolution (AR) 202 which was sponsored by Assemblyman Upendra Chivukula (D), Deputy Speaker; Assemblyman Herb Conaway, Jr. (D), Chairman, Health Committee; Assemblywoman Connie Wagner (D), Vice-Chairman; and Assemblywoman Mary Pat Angelini (R), member of the Health Committee

P.A.N.D.O.R.A. partners with the Lanford Foundation-Lifelyme™, Inc.

To be based in Newark, New Jersey, the NeuroEndocrineImmune (NEI) Center™ is a community patient-driven project of P.A.N.D.O.R.A, (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc) in partnership with the Lanford Foundation-Lifelyme™, Inc.

The NEI Center™ is the first research center to incorporate scientific and clinical research, quality in patient care, and social services, all in one state-of-the art facility. The establishment of The NEI Center™ is based on the philosophy that the similarities in symptoms of neuroendocrineimmune disorders (NEIDs) are the human body’s response to similarities in the underlying pathophysiologies that cause these disorders.

The cornerstone of the NEI Center’s mission is that discoveries and advances made in any one of the NEIDs will be applicable and beneficial to other NEIDs, thereby bringing medical researchers closer to a cure. At its inception, the NEI Center™ will include research of the following disorders/illnesses:

Chronic fatigue syndrome (CFS), fibromyalgia (FM), Gulf War syndrome or illness (GWS/I), multiple chemical sensitivity (MCS), and other associated bacterial and viral illnesses.

“Moral and political victory,” said Marly Silverman, a CFS and fibromyalgia patient who founded P.A.N.D.O.R.A. in July 1, 2002, “On behalf of P.A.N.D.O.R.A., we are mindful of the historical significance of the unanimous vote by the New Jersey Senate as well as by the New Jersey Assembly in 2009. Patients across this country will be celebrating what is an amazing and pivotal moment in the history of the neuroendocrineimmune disorders community. The New Jersey Legislature has demonstrated a caring commitment to a community of patients who for the first time in the state of New Jersey can look forward to a brighter and fruitful future.”

Veny W. Musum, chairman of the NEI Center Project, who was diagnosed with chronic Lyme disease in 2004 along with his wife, Patricia, added, “The passage of SR 20 is a moral and political victory for millions of individuals stricken with neuroendocrineimmune disorders who have been living far too long without the compassionate support, research and treatment options they deserve. I am proud of my state of New Jersey!”

Advocates Extraordinaire™ & community support

“The overall community support has been outstanding for this patient-driven, physician-approved project. The unanimous votes by each New Jersey senator came about because of the involvement of individuals who participated in the Advocate Extraordinaire™ program, by making calls, writing e-mails and thanking the New Jersey Legislature for their vision and support of the Center,” said Dr. Kenneth Friedman, one of the founding board trustees of the NEI Center, as well as former member of the CFS Advisory Committee, and a member of the Executive Board of P.A.N.D.O.R.A.

“The New Jersey legislators unanimous support for the NEI Center reflects the kind of leadership needed to bring about positive change in our nation’s Health Care,” said Sandi Lanford, Co-founder of the NEI Center™ and the President-Founder of the Lanford Foundation-Lifelyme™, Inc, who was born and raised in New Jersey. The overall community support has been outstanding for this patient-driven, physician- approved project. The unanimous votes by the New Jersey Legislature came about because of the involvement of individuals who participated in the Advocate Extraordinaire™ program, by making calls, writing e-mails and thanking the New Jersey legislators for their vision and support of the Center,” said Dr. Kenneth Friedman, one of the founding board trustees of the NEI Center, as well as former member of the CFS Advisory Committee, and a member of the Executive Board of P.A.N.D.O.R.A.

Dr. Lesley Fein, member of the NEI Center Project team, stated “This center will be a beacon of hope for patients nationwide, and a place which will bring scientific innovation in New Jersey as well as in the rest of the country.”

Present at the passage of the law were Veny Musum, Chairman of the NEI Center Project and Debbie Floyd, team member of the NEI Center™ project.

NEI Center set to open by 2012

The NEI Center founders are already preparing fundraising efforts to make the Center operational by late 2011-early 2012. For more information about The NEI Center™, visit www.neicenter.com.

-

About P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy – Based in Coral Gables, Florida, P.A.N.D.O.R.A. was founded on July 1, 2002 by Marly C. Silverman, a chronic fatigue syndrome and fibromyalgia patient. Its mission is to raise awareness of the plight of persons with chronic fatigue syndrome, fibromyalgia, chronic Lyme disease, multiple chemical sensitivities/EI, and Gulf War illness, and advocate on quality of life issues. P.A.N.D.O.R.A.is Built on Hope – Strong on Advocacy – Finding a Cure through Research. For more information, visit www.pandoranet.info.

Dr. Martin Pall’s theory about MCS confirmed

FOR IMMEDIATE RELEASE

Portland, OR – July 5, 2010 – The physiological mechanism for Multiple Chemical Sensitivity proposed by biochemist Martin L. Pall has been confirmed with the recent findings of an independent research group in Rome.

Multiple chemical sensitivity (MCS), also known as chemical sensitivity and toxicant-induced loss of tolerance (TILT), is a disease initiated by toxic chemical exposure, leading to toxic brain injury that produces high level sensitivity to the same set of chemicals that are implicated in initiation of the disease. Sensitivity responses in other areas of the body are also often seen.

“Epidemiological studies show that MCS is a stunningly common disease, even more common than diabetes,” said Pall, professor emeritus of biochemistry and basic medical sciences at Washington State University. “My review of the literature and other research I’ve conducted over the past eleven years shows the probable central mechanism of MCS is a biochemical vicious mechanism, known as the NO/ONOO- cycle.”

Pall’s work is widely published in books and articles, the most recent of which is a chapter in the authoritative international reference manual for professional toxicologists, General and Applied Toxicology, 3rd Edition, 2009.

The NO/ONOO- cycle

The NO/ONOO- cycle, pronounced no-oh-no, is named for the chemical structures of nitric oxide (NO) and peroxynitrite (ONOO-). This biochemical vicious cycle mechanism predicts that each of the elements linked together in the cycle are elevated in patients suffering from MCS and related diseases. Most of the elements of the cycle have been shown to be elevated in such related diseases as chronic fatigue syndrome and fibromyalgia and also in animal models of MCS. However, several cycle elements have never been measured in MCS patients.

The recent study conducted by the research group in Rome is significant in regard to the NO/ONOO- cycle theory because it shows that three elements of the cycle are elevated in MCS patients (De Luca et al, Toxicology and Applied Pharmacology, 2010, April 27 Epub ahead of print). Those elements are the inflammatory cytokines, nitric oxide, and oxidative stress. Each of these measurements provides important confirmation of the disease mechanism proposed by Pall.

The inflammatory cytokines and nitric oxide elevation have never before been measured in MCS patients, although they have been shown to be elevated in animal models of MCS. Oxidative stress has been reported in two earlier studies of MCS patients, but the data provided in the De Luca et al study are much more extensive than are the earlier data. Consequently, these new data all provide important confirmation of the NO/ONOO- cycle as the central disease mechanism in MCS.

The NO/ONOO- cycle also is useful in understanding the role of toxic chemicals in MCS and the role of treatment. Each of the seven classes of chemicals implicated in MCS are thought to act indirectly to increase the activity of the NMDA receptors, which are glutamate receptors for controlling synaptic plasticity and memory function. This activity, in turn, leads to rapid increases in intracellular calcium (Ca2+), nitric oxide and peroxynitrite (ONOO-), acting to greatly stimulate the NO/ONOO- cycle.

“Many of the agents used by environmental medicine physicians to treat MCS patients can be viewed as lowering different parts of the cycle, and thus are validated in part by this mechanism,” Pall said. “Consequently, the NO/ONOO- cycle mechanism can be viewed as validating therapeutic approaches used in environmental medicine in the U.S., in Germany and some other areas of Europe and in some other countries.”

Contact:

Martin L. Pall, PhD

Professor Emeritus of Biochemistry and Basic Medical Sciences

Washington State University

(1*) 503-232-3883

martin_pall@wsu.edu

Main web site: www.thetenthparadigm.org

German Website: www.martinpall.info

Related Articles:

• MCS – Multiple Chemical Sensitivity, a disease caused by toxic chemical exposure
• Martin Pall about genetic evidence and Multiple Chemical Sensitivity
• Chemical Sensitivity – MCS and a number of medical conditons respond positively to Sauna Therapy
• MCS-Multiple Chemical Sensitivity at “General and applied Toxicology 3rd Edition”

The author, Ryozo Tamakoshi is a member of the Japanese organization CACP – Citizens Against Chemicals Pollution.

On February 22, 2010, a conference called “The 1st Meeting for Learning Chemical Policies for Enacting a Basic Chemical Law” was held in the House of Representatives in Tokyo. In view of his chemical and electromagnetic sensitivities, Ryozo Tamakoshi gave a lecture on MCS. This was a matter of particular concern for him, as his health troubles were caused by chemical exposure. The conference focused on the topic ‘Security of Chemicals’ and the need to create a new policy for more careful handling of chemicals – important basic principles for all the Japanese people who have to live with MCS.

Talk of Ryozo Tamakoshi / Citizens Against Chemicals Pollution

As a patient with multiple chemical sensitivity, I must share with you some important things.

I have multiple chemical sensitivity and electromagnetic sensitivity. The onset of multiple chemical sensitivity begins differently among individuals as do the corresponding symptoms. In my case, I gradually became chemically sensitive. I think my symptoms are relatively mild compared to others with this condition. Some patients are seriously compromised and can hardly leave their homes to participate in a meeting like this one. I have some risks going out in public, but think it my duty as one who can actually attend a meeting like this one, to enlighten others regarding this condition called multiple chemical sensitivity or MCS. Therefore, I would like to express my gratitude for your allowing me the opportunity to speak to you today. Thank you. I would like to discuss seven points. As you listen, please consider that my findings are based on personal experiences.

1. One cause of multiple chemical sensitivity is the toxic effect of extremely low levels of chemical substances.

On October 1, 2009 in Japan, the Medical Information System Development Center (MEDIS-DC) – a subsidiary organization of the Ministry of Health, Labor and Welfare (MHLW) – registered “multiple chemical sensitivity” as “ICD-10 Japanese standard disease master”. Multiple chemical sensitivity was classified in Japan into ICD-10 code T65.9 – “Toxic effect of unspecified substance, Poisoning NOS”.

Please look at the following material (1)(2).

From these references, it is well understood that multiple chemical sensitivity is classified into “Toxic effect of substance”

(1) T65.9 ICD-10 WHO

Chapter XIX: Injury, poisoning and certain other consequences of external causes (S00-T98)

T51-T65: Toxic effects of substances chiefly non-medicinal as to source

T65 Toxic effect of other and unspecified substances

T65.9: Toxic effect of unspecified substance Poisoning NOS

(2) The Japanese name of diseases classified into “ICD10 code T65.9″

The Japanese name of diseases

1. multiple chemical sensitivity
2. systemic poisoning
3. poisoning
4. accidental poison ingestion
5. attempted suicide by taking poison

In Japan, it is clearly thought that the cause of multiple chemical sensitivity is a “Toxic effect of chemical substances” . And frankly speaking, this means that if there were no chemicals which had toxic effects, people wouldn’t become chemically sensitive.

As you can see, I cannot live without a double gas mask now. (VOC mask and activated carbon mask) Especially in winter, I cannot take this mask off even when I sleep at night because the heating machine in the nearby greenhouse operates at night and gases are released. The manufacturer of the heating machine writes in the catalog on the internet as follows, “Flue gases are extremely harmful to human health and crops. Please be sure to release them outdoors”. Why is it allowed to release such harmful gases outdoors?

My biggest fear in winter has been these gases. When the gases are released, suddenly I smell burning, start coughing, phlegm occurs, and my eyes become painful. Furthermore, my mouth becomes bitter, I have tongue numbness, and I feel poisoning (discomfort) of the internal organs, especially to the digestive organs. Then, I have strong fatigue throughout my body so I lie on the floor and sleep eventually.

I cannot prevent the bad influence of these gases now, even if I have on a gas mask and use air purifiers in my home. When my house is in the upwind side of the greenhouse, I am relatively safe. But when I am downwind, I am always pushed into the hell. To avoid these gases, I often sleep in my car, away from my house, or sometimes in a rice field or on a mountain. This is just one example of the difficulties I face with multiple chemical sensitivity.

For me, the current world, no matter where I live and go, is a toxic or poisonous world. The toxicity of substances at the level of ppm and ppb has a big influence on my health. My daily health disorders due to the exposure of many harmful chemicals cannot be simply explained by an allergic reaction any longer. The doctors who examined my symptoms only from the perspective of immune disorder failed to make proper diagnosis of my symptoms.

I think that it is impossible to understand the essence of multiple chemical sensitivity without focusing on the complexity of many chemical toxicities and patients’ symptoms.

I do not use the word “poison” (toxic effect) emotionally. I only use the word “poison” (toxic effect) to explain daily, normal phenomena, because I cannot live without a gas mask.

2. The reality of multiple chemical sensitivity is the result of complex toxic effects of many chemicals and it is spreading out all over the world.

Modern society is full of so many chemicals. Life without chemicals is no longer a possibility. Of course there exist many chemicals with toxic effects. We are living with the complex pollution of them. New chemicals have been produced one after another without enough consideration of the influence of chemicals on ecosystems and without confirming whether those are safe for human beings and creatures. Thus, the “toxic world” has been spread globally.

I have been in contact, via the internet, with international patients who have multiple chemical sensitivity and environmental illness. I have come across sorrowful cries of patients, warm words of empathy to comfort one another, and powerful protests and demands against our “toxic world”. Moreover, I’ve received a lot of essential information about MCS and environmental illness which is reported on the internet to the entire world. Complex chemical pollution has now spread out all over the world.

3. Multiple chemical sensitivity cannot be separated from other developmental and chronic multisystem illnesses caused by the environment.

Multiple chemical sensitivity cannot be separated from other environmental illnesses such as sick building syndrome, allergic diseases and electromagnetic hypersensitivity. We must not only focus on the chemical pollutants, but must also look at other environmental factors such as biological infectious agents and electromagnetic fields. Many patients with MCS also have allergic diseases and electromagnetic hypersensitivity. This condition is a complex one.

Consider expanding your perspective on developmental disorders. In Japan, developmental disorders mean a pervasive developmental disorder, high-functioning autism, Asperger syndrome, a learning disorder (dyslexia) or attention deficit hyperactivity disorder (ADHD), etc. Currently, there are a lot of research papers detailing that environmental factors (chemicals) may cause the appearance of those developmental disorders. The increasing number of these reports is more and more available.

I have been supporting two children with developmental disorders at home while considering chemical pollution as the cause of these types of disorders. People around them don’t understand them, which gives the children worries and suffering. Their situation seems to be similar to ours. Supporting their study is my pleasure.

4. Some common effects can be seen in MCS, but each person has different symptoms. Therefore, there are various difficulties and disabilities due to MCS. Comprehensive supports are needed for the various difficulties and disabilities.

I think it very important to understand the individual symptoms in connection with various difficulties and disabilities in life. I strongly wish industrial accident authorization and disability authorization would reflect precisely the situation of the patient and be performed promptly. It is positive that industrial accident authorization and disability authorization of MCS have been actually recognized in Japan. However, the form of documents for disability authorization is partly inappropriate, so the paperwork can’t be filled out precisely. I think the forms and documents should be immediately edited and improved.

Guaranteed rights of medical care, welfare, labor, housing and pension corresponding to the state of every person are written in Japan’s Constitution.

5. To protect patient’s lives and health, to treat symptoms, and to recover health, should be top priority, in addition to avoiding exposure to toxic substances and ensuring safe and secure places to live.

For patients with MCS, the most important thing is to avoid exposure of toxic substances.

In particular, ensuring emergency evacuation of patients has become an urgent issue.

But it is very difficult to secure a safe place by one’s own effort. To reduce a heavy personal burden, some support by the authorities is absolutely necessary for the patient. In addition, it should be emphasized to make available all correct information about harmful chemicals to all citizens.

6. We have a serious problem. We are often attacked by the feeling of isolation, loneliness, anxiety, fear, and helplessness.

This is one of the most serious and important problems. MCS patients around the world, just like us, worry and suffer. Sadly, there are still some people who commit suicide in despair. When people around me, including my family, can’t understand my physical and mental state, I have a terrible feeling of loneliness.

Continuous bad health conditions, anxiety and fear of a sudden chemical attack, and isolation from participation in society, leaves me with a feeling of helplessness and despair. To break this ongoing cycle, mutual support among friends and society is needed. The social recognition and the social support are absolutely necessary.

When exposed to toxic chemicals, I get irritated, impatient and sometimes get in a bad mood. I cannot smile. Unfortunately, these behaviors are not viewed as a result of the individual’s chemical poisoning but instead a problem with the individual’s heart, which is not the case. In order to prevent the unfortunate misunderstandings like these, it is very important that we spread correct information regarding this condition and strive for the recognition of MCS. We must support those who are apt to have low self-esteem and affirm those with chemical sensitivity so they may live freely in peace, and participate in society with more pride.

7. The eight basic principles of “Basic Law on Chemicals Policy” that ChemiNet has proposed should be respected.

All the basic principles listed below are very important.

The many problems regarding multiple chemical sensitivity will be solved fundamentally in the process of policy formulation and implementation of the comprehensive chemicals on these basic principles:

1. Production and use of chemicals for a sustainable society (The reduction the amount of chemicals)
2. No Data, No Market principles
3. Consideration must be given to the people ( fetus / child) who are most vulnerable and also to the ecosystem
4. Lifecycle management must be initiated (From research and development to production, use, recycling and disposal
5. The precautionary principle must be respected
6. Alternative principle must be initiated
7. The participation of all people concerned. The collaboration principle must be implemented
8. International cooperation must occur

Author: Ryozo Tamakoshi

Thanks to Christi and Larry for reading correction.

Related Articles about MCS in different countries:

• Multiple Chemical Sensitivity recognized as physical disease at ICD-10 in Japan
• Spanish Workgroup met with Ministery of Health to create a MCS Consensus Document
• Italian Parties united under MCS cause
• The Department of Health of the Austrain Government recognizes MCS as a physical Disease
• German federal institute for occupational safety and occupational medicine mentioned Multiple Chemical Sensitivity at Thesaurus Safety and Health at Work
• MCS registered as physical disease at ICD-10 in Germany

International Appeal from Wuerzburg

The European Academy for Environmental Medicine (EUROPAEM) invited many renowned national and international scientists and health care professionals to a medical conference held in Wuerzburg, Germany from April 23 to April 25, 2010. These professionals were from the fields of environmental medicine, toxicology, immunology, neurology and genetics and other health fields as well as physicians and dentist. Also in attendance were representatives of patient initiatives. The theme of this international medical conference was Science Meets Practice. It dealt specifically with the issues of Neuro- Endocrine- Immunology and their importance in environmental medicine.

Greatly concerned, participants noted the increasing prevalence of chronic multisystem illnesses such as multiple chemical sensitivity (MCS), chronic fatigue syndrome (CSF), fibromyalgia (FMS) as well as cardiovascular diseases, metabolic syndrome, neurodegenerative diseases, auto immune diseases, and cancer.

At the conference it was impressively demonstrated that these chronic diseases are based on similar pathological mechanisms. Common mechanisms are chronic inflammatory processes influenced by environmental factors including chemical pollutants, biological infectious agents, and electromagnetic field (EMF) triggers.

Chronic diseases mean long-term patients and such patients require consecutive higher medical costs. This often leads to social exclusion of the affected people. Facing the appalling reports of Europe´s growing financial constraints, especially in public health, a further increase of chronic illnesses will accelerate the ongoing collapse of the National Health Service and medical insurance companies in Europe. Remedy is only possible with a change of priorities from today´s unilaterally symptomatic oriented medicine to causally oriented medicine focusing on cost-effective primary prevention.

Conference participants addressed an urgent appeal to the European environment and health ministers, to the European Commission, the European parliamentarians, national governments and to the directors of social and private insurance companies. They urge them to take these findings and developments into serious consideration, stressing and weighting financial investments primarily in prevention, precaution and best early detection and diagnosis of these chronic and environmentally related illnesses.

All over Europe this requires the full awareness of these research findings of the practicing physicians of environmental medicine and their integration into university research and teaching. The European governments are asked to finally implement the already ratified decisions of the Fourth Ministerial Conference on Environment and Health Ministers held in Budapest in 2004.

This appeal was unanimously adopted by the congress.

Wuerzburg April 25, 2010

For the board of EUROPAEM,

Jean Huss, Vice-Chairman

Dr. Kurt Mueller, Chairman

Dr. Peter Ohnsorge, Managing Chairman

Dr. Hans-Peter Donate, Press, Responsible

• German Version – International Appeal from Wuerzburg
• Japanese Version – International Appeal from Wuerzburg / Thanks to Takeshi for translation.

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
• Naked Truth about MCS
• Meeting betweenMinistry of Health and Multiple Chemical Sensitivity Associations in Spain

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

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

MeP DOMENICO SCILIPOTI (IDV): “HOW TO HELP PEOPLE AFFECTED BY ENVIRONMENTAL DISABILITY”

PRESS RELEASE, Rome 21.dec.09

“In order to help people with Environmental Disabilities whose survival and quality of life depend not on drugs, but on avoiding certain environmental factors, today I presented a project of law about this issue”, comments On. Scilipoti. “The law is meant for environmentally triggered diseases such as Multiple Chemical Sensitivity (MCS), involving a loss of tolerance of chemicals, or Electromagnetic Hypersensitivity (EHS), forcing the affected ones to get far from electromagnetic fields emitted by mobiles, Wi-Fi, electric cables, etc. But the law is also meant for genetic, metabolic, neurological or immunological disorders such as fibromyalgia or CFS (involving chemical intolerances) or favism, which gives serious reactions to legumes. Other cases of environmental disability are seen in autism, epilepsy, migraine and lupus that involve reactions to fluorescent lighting”. “It’s important to discuss this law as soon as possible in order to give an answer to these people”, Scilipoti concludes.

LAW PROPOSAL

By the Member of the Chamber DOMENICO SCILIPOTI

“Rules for the Protection of Individuals with Environmental Disabilities”

Submitted December 21, 2009

HONORABLE COLLEAGUES ! – Over the last hundred years the environment of human life has been completely overwhelmed by industrial activities. Before the advent of chemistry, in Nature there were approximately 150 chemicals, while today there are on the market over 100,000 chemicals, most of which are not tested for their long-term effects on health.

At the same time the microwave background in the natural environment was virtually nonexistent and it was derived from extra-planetary sources in a scale of a billionth of a microwatt per square centimetre, while the wireless personal communications produced in the last fifteen years have pushed the EMF levels to tens of micro watts per square centimetre.

Thus, the human body evolved during thousands of years in an environment made of only 150 chemicals and nearly without micro-waves and it is not biologically prepared to protect itself from the sudden increase of these environmental factors, unlike, for example, the defense from ultraviolet rays of the sun that is guaranteed, after centuries of evolutionary selection, by the melanin.

Our society is facing, then, a growing number of new diseases and disorders caused by the use of toxic substances, considered innocuous for decades or whose health effects are still unknown, as well as electromagnetic fields, that are biologically active even if still considered harmless by the actual laws that are based exclusively on the thermal effects of electromagnetic radiation.

In this regard it should be observed that determining the legal limits for exposure to toxic agents or to electromagnetic fields has historically been determined on the basis of studies that are largely funded by the industry and it is scientifically proven that the public health policies arrive too late to consider the advancement of scientific knowledge.

In the case of electromagnetic fields, for example, while there has been an uncontrolled proliferation of wireless communications technologies over the past decade, there is a growing evidence about the non-thermal affects of the exposure to magnetic fields much lower than those admitted by the guidelines, up to the point that independent scientists have on several occasions adopted resolutions to ask for lower legal limits of these fields: Catania Resolution (2002), Benevento Resolution (2006), London Resolution (2007), Venice Resolution (2008), Porto Alegre Resolution (2009).

In 2007 a group of independent scientists founded the BioInitiative Group with the aim to review the studies and to analyze the existing health policies about electromagnetic fields with the point of view of the precautionary principle (www.bioinitiative.org). BioInitiative Report was adopted by the European Environmental Agency in the same year and the conclusions call for a lower safety limits of 0.6 V / m, suggesting that for very high frequency waves the threshold limit of safe exposure could be even thousands of times less than the one in the laws of the most industrialized countries.

In the Resolution about Interim Evaluation of the European Action Plan for Environment and Health 2004-2010, 4th September 2008, the European Parliament has listed multiple chemical hypersensitivity, the syndrome of dental amalgams, electromagnetic hypersensitivity, the sick building syndrome or the Attention deficit and hyperactivity syndrome among children as newly emerging environmental diseases.

Over the past three decades a growing number of people with Multiple Chemical Sensitivity (MCS) and Electromagnetic Hyper-Sensitivity (EHS), two different conditions, but similar because they force those affected to avoid the triggering agents, respectively chemicals and electromagnetic; moreover very these two conditions often overlap.

Multiple Chemical Sensitivity (MCS) is a disorder that involves multi-organ reactions in case of exposure to environmental chemicals at law doses, far below those tolerated by the general population. The diagnostic criteria for the disease were established by an International Consensus in 1999, as a result of a multi-centric study lasted ten years, which was published in Archives of Environmental Health (vol. 54 / 3).

The Consensus defines MCS as:

[1] a chronic condition

[2] with recurring symptoms that occur in a reproducible way

[3] in response to low level exposures

[4] to multiple chemicals that are not related

[5] that improve or disappear when the triggering agents are removed

Later a sixth criterion was added about the symptoms affecting more than one organ or organ system.

The onset of MCS was associated with the exposure to seven classes of chemicals: organic solvents, organochlorine pesticides, carbamates, organochlorine, pyrethroids, mercury, hydrogen sulfide and carbon monoxide (M. Pall, 2009). Substances that can trigger reactions are especially insecticides, pesticides, disinfectants, detergents, perfumes, deodorants, air fresheners, paint, solvents, glues and tar products, wood preservatives, building materials, printed paper, removal of dental amalgam, inks, exhaust fumes from stoves, fireplaces, barbecue, plastic products, drugs, anesthetics, formaldehyde found in furniture, fabrics and new fabrics, fuels, and all that is derived from petrochemicals.

Chemical sensitivity to common products was found in the 15% of the US population and in the 10% of the people in Denmark, while the cases of MCS disability affect 1,5 to 3% of the US population (G. Heuser , 1998). MCS is the cause of many debilitating diseases affecting many body systems: the renal, respiratory, circulatory, digestive, dermal, neurological, musculoskeletal and endocrine-immune systems.

Genetic studies suggest that there is a genetic predisposition to such disease in individuals with genetic polymorphisms of CYP2D6, of the glutathione sulfur transferase, of the NAT2 or of SOD, which are responsible for a reduced capacity of metabolization of xenobiotic substances.

MCS is often mistaken for a common allergy, since the symptoms appear and disappear with the removal of the cause; however its dynamics and its course are completely different because the ability to tolerate chemicals is lost forever.

There is no resolving cure for MCS, but international health protocols suggest a the environmental avoidance of chemicals as the best therapeutic approach with no contraindications. Due to this chemical avoidance the MCS patient must therefore change his/her living and working environment, his/her leisure activities while the food must be organic and free of chemical additives or preservatives. This task can be facilitated by the adoption of therapeutic aids such as cotton or paper masks with active carbon or cotton filters, ceramic oxygen masks, activated carbon filters or reverse osmosis water purifiers, all metal cage and active carbon and HEPA filters air purifiers for the car and the house.

In the case of IV type allergy to metals, it was demonstrated an improvement in MCS patients by removing with safe protocol the dental amalgam fillings, or of other prosthetic or dentistry metals. Experimental studies suggest a therapeutic approach designed to lower the body toxic load through a prolonged stay in environmentally controlled unites, by daily physical therapy and heat, and integration therapy to reduce the oxidative stress, which is typically very high in MCS patients.

Since Multiple Chemical Sensitivity can vary greatly from case to case and over time, with people completely disabled and others who suffer with mild symptoms occasionally, the International Consensus in 1999 recommended to characterize each diagnosis with quantitative and / or qualitative impact on life or disability (ie: minimal, partial, total); severity of symptoms (ie: mild, moderate and severe), frequency of symptoms (ie: daily, weekly, monthly), and sensory implications (identifying what sensory systems are involved – olfactory, trigeminal, gustatory, auditory, visual and / or touch, including perception of vibration, pain, and hot or cold – showing a change in sensitivity (more or less) and / or tolerance to normal levels of stimulation both chronically, and in response to exposure to specific chemicals).

In Italy there are already dozens of seriously ill persons with disability pension for MCS at 100%, and some cases of recognition of disability with escort, but these are cases where the disease was at such an advanced stage that there was no doubt about the diagnosis and disability status, while there is the need for a preventive protection and for the recognition of disability even in those who are still employed in order to keep them as long as possible active citizens in society.

In United States MCS is recognized as a disease and disability by ADA (American with Disabilities Act), the U.S. Department of Building and Urban Development, the Environmental Protection Agency (EPA), agencies, commissions, institutions and federal departments, state and local governments, as well as judgments of federal and state courts.

In Germany, Austria and Japan, MCS was included in the International Classification of Diseases of the World Health Organization, ICD-10, with the code T78.4 relating to “unspecified allergy”. The German Ministry of Welfare also equalises MCS to a motor disability.

The Agency for Environmental Protection in Denmark published in 2004 a report on MCS, which concludes that there is ample scientific evidence that chemical sensitivity is caused by environmental factors and the Danish Government has pledged to minimize the use of materials emitting gas in indoor environments in order to prevent the development of this condition.

The diseases that can involve an hyper-sensitivity to chemicals are neurotoxic encephalopathy, encephalitis myalgic or Chronic Fatigue Syndrome (CFS), Fibromyalgia, Hyper-Reactive Airway Syndrome, nonspecific asthma, migraine, Daunderer Syndrome, Sjogren’s syndrome, atopic dermatitis, cancer (especially in case of chemotherapy) and many other conditions.

Another growing environmental disease in recent decades, which incidentally also affects many patients with MCS, is the Electromagnetic Hyper-Sensitivity (EHS), which involve multi-organ reactions to electromagnetic fields in everyday life, such as those emitted by power lines at high voltage (power lines), radio and television transmitters, by household appliances and business tools (eg. video terminals) and, especially, by mobile phones and by mast stations. It is a condition that can lead to troublesome and occasional symptoms up to a serious illness resulting in the reduction or loss of earning capacity and to a deterioration in the quality of life.

“Double blind” scientific studies showed that EHS subjects were able to correctly recognize the presence of electromagnetic fields and they suffered the symptoms they attributed to these fields, as a result of provocation. Moreover, in recent years, more and more experimental evidence support the objectivity of “Electromagnetic diseases” and their possible molecular, cellular and functional basis. Prof. Olle Johansson at the Karolinska Institute in Sweden discovered, in particular, an increase of mast cells and other substances secreted by them in samples of skin of the face of EHS people posed in front of computer screens. Mast cells play a role in allergic, hypersensitivity and anaphylactic reactions, but also in the production of substances responsible for vasodilation and contraction of the muscle and they might be responsible for stroke-like symptoms reported by some EHS individuals after the exposure to electromagnetic fields.

In Sweden, where according to some researchers EHS affects up to the 10% of the population, the Ministry of Health and Welfare (Socialstyrelsen) recognized the condition as a “reduced capacity that makes a person unfit in their relation to the environment” and suggests doctors to classify this condition with the International Classification of Diseases with the Code R68.8 ICD, related to “Other specified general symptoms and signs of illness” (Socialstyrelsen, enheten klassifikationer och för terminologists 2009-03 — 09 Dnr 55-2573/2009). The EHS subject then receives grants to improve his/her living or work environment, for example by shielding with paint or tents, or in severe cases with an accommodation away from electromagnetic sources.

In Canada EHS is recognized as a debilitating condition and there is also help from the pension system for the seriously ill cases.

In United States EHS is listed under the law for disability ADA (Americans with Disabilities Act).

The WHO believes that the EHS involves 1 to 3% of the population, while other estimates produced in 2005 by the Research Institute of Social and Preventive Medicine, University of Berne, Switzerland, indicated an incidence of 5% of EHS Swiss people. According to Gino Levis, former professor of Environmental Mutagenesis at the University of Padua, and permanent member of the Commission Toxicology at the National Institute of Health in Rome, these percentages will rise dramatically paralleling the spreading of wireless technologies.

On 2nd April 2009, the European Parliament, underlying that wireless technologies (cellular, Wi-Fi/WiMAX, Bluetooth, DECT phone lines) emit magnetic fields that can have adverse effects on human health, has called on the Member States to recognize as disabled people those who suffer from Electromagnetic Hyper-Sensitivity so as to ensure adequate protection and equal opportunity, as Sweden did for several years:

http://www.europarl.europa.eu/oeil/FindByProcnum.do?lang=en&procnum=INI/2008/2211

Some U.S. and Canadian Governors proclaim the May as “Month for the awareness of MCS and Electromagnetic Hyper-Sensitivity “, while the ones affected by these conditions in our country are in fact left to their own and only who possess the necessary financial resources may leave their jobs, improve own home or to relocate to a healthier place.

In November 2009, sixteen cities in France decided to reduce experimentally the top limit of EMF exposure to the one recommended by BioInitiative (0.6 V/m), also in response to the invitation (May 2009) by the Ministry of Environment to “adopt more stringent limits”.

The Israeli Ministry of Environment informed (July 2009) the population about the careful use of the phone.

Environmental pollution has produced a considerable increase in allergies which are often complicated by a framework of poli-allergies that are difficult to handle by the only vaccination or drug treatment. In some severe cases the poli-allergic patient is forced to avoid the allergens. Moreover it’s known that many patients with chemical sensitivity or poli-allergies also suffer from hyper-reactivity to drugs.

There are also a number of other environmental conditions that are due to an enzyme deficiency or to a metabolic deficiency. Consider, first of all, those with a reduced activity of catalase, glutathione sulfur transferase or superossidismutasis, but also the patients with favism that must not come into contact with traces of legumes, both by ingestion and by inhalation.

This bill aims to give an answer to all those who, to maintain a healthy state, are forced to follow a protocol of avoidance of agents that trigger a reduction of their psycho-physical wellness.

In this regard, this bill refer to the precautionary principle enshrined by the European Treaty of 1992; to the European Court of Justice that has repeatedly stated that the content and scope of this principle in law is a cornerstone of policy protection sought by the Community in the field of environment and health; to the binding criteria adopted by the Commission in its communication of 2 February 2000 on the precautionary principle (COM (2000) 0001); to the European Parliament resolution of the April 2, 2009 has recommending to Member States to involve the market operators in improving indoor air quality and in reducing the exposure to electromagnetic radiation in their property, their subsidiaries and in their offices. To date this recommendation has been unheard.

This bill appeals especially to the United Nations Convention on Equality of Opportunities for Persons with Disabilities and to the Convention on the Rights of Persons with Disabilities stating that all humans are entitled to live in a society based on equality. Patients suffering from the above conditions are in fact excluded from this basic right to health and from the right to equality because of the lack of specific regulations about Environmental Illness or Environmental Disability and, above all, because of the poor training of the medical profession about the environmental medicine, due to insufficient public funds, thus delegating medical training mainly to industry, whose interest it to focus the attention only on chemical therapeutic remedies rather than to the real causes of disease.

LAW PROPOSAL

ART. 1. (Definition and recognition of environmental illness as a social disease and defining the rights of those with Environmental Disabilities)

1. Environmental Illness is defined as any condition that results in an altered state of health induced by environmental factors while Environmental Disability defines a reduced capacity of the individual in his/her relationship to the surrounding environment. Such definition covers all diseases that are known to have a predominantly environmental origin, such as Multiple Chemical Sensitivity (MCS), Electromagnetic Hyper-Sensitivity, allergies, asthma, hypersensitivity to chemicals, but also all those conditions of different or unknown pathogenesis which involve the same kind inability to relate with the surrounding environment, such as Fibromyalgia, Chronic Fatigue Syndrome, the sick building syndrome, the favism, as well as metabolic disorders or complications of chemotherapy.

2. The Minister of Labor, Health and Social Policy shall, through a decree, implement the provisions of paragraph 1 of this Article, within one month from the date of entry into force of this Act, in order to make the necessary modifications to the decree of Minister of Health dated December 20, 1961, published in the Official Gazette No. 73, 20 March 1962 as the “Framework Law for the assistance, social integration and rights of persons with disabilities” No 104 of 5 February 1992.

ART. 2. (Aims)

1. The provisions in this law, together with the National Health System general support, are meant to guarantee the fundamental rights to equality and to equal opportunities and to foster integration into normal social life of people suffering from Environmental disease or disability and to promote research about environmental medicine.

2. The regions and autonomous provinces of Trento and Bolzano shall, within their health plans and within the limits of resources from the National Health Fund, design objectives, actions and other appropriate programmatic initiatives to address the Environmental Disability.

3. The national and regional provisions in subsections 1 and 2 are directed to the following:

a) to establish a National Reference Center for Environmental Medicine, entirely funded by the National Health System and exclusively managed by specialists who also a training in clinical toxicology and who are completely free of conflicts of interest, or who are free of private enterprises or interests (a part from their profession), who have not worked even occasionally for the industry over the five years preceding their appointment, who do not belong to any professional organizations or associations sponsored by the industry and, finally, who don’t hold shares or holdings in chemical or pharmaceutical industries of an exceeding value of five thousand dollars.

b) to facilitate the access to essential levels of assistance guaranteed by art. 3 of the Constitution, changing the structures of the Public Health System with the adoption of specific protocols for first aid and with the creation of at least one clinic for every province dedicated to persons with Environmental disabilities, realized under the rules of the Environmentally Controlled Units of the international environmental medicine hospitals that provide access direct from the outside, the use of green building techniques and materials, the use of inert and odourless materials, free of radon-emitting and of particulate, but also with the adoption of controlled ventilation and air purification systems in order to isolate the environment from the rest of the hospital;

c) to impose a ban on mobile phone use, smoking and on products containing fragrances in all healthcare settings (hospitals, clinics, medical), as well as in schools, offices and public utilities, and the requirement – for all local businesses, including the tourism facilities – for warning signs regarding: the use of Wi-Fi system or wireless communications, the use of insecticides, herbicides or pesticides (in the ten days before), the presence of products such as potpourri or scented air fresheners, the presence of beans or legumes;

d) to prevent the complications of environmental illness or of diseases involving an Environmental Disability promoting a greater awareness in local authorities and in the health professionals about the importance of indoor air quality, about the harmful effects of chemical substances in everyday products (detergents, insecticides, paints, building materials, etc..), as well as about the dangers associated to the wireless communication technologies (cellular, Wi-Fi, Wi-Max, Bluetooth, DECT, etc.) in order to prevent the onset of diseases with a particular emphasis on children, the chronically ill, elderly, pregnant women and especially on those with a reduced genetic detoxification of xenobiotic substances that are most likely to contract Parkinson MCS and cancer;

e) to make arrangements to facilitate the act of voting in an environment consisting with the Environmental Disability, including, where appropriate, the possibility to vote by mail, under the provisions of Article 8;

f) to improved health education of the population on Environmental Disability;

g) to promote health education of the individual suffering from sickness or disability of the Environmental and of their family;

h) provide training and retraining of health personnel in relation to the Disability Environmental;

i) to provide education and training of staff from social services and Law Enforcement in relation to the Environmental Disability;

l) to provide for the revaluation of pensions of the National Institute for Insurance against Accidents at Work (INAIL) in favor of those who have been exposed to chemicals or electromagnetic fields in the workplace; of those whose occupational disease evolved into an Environmental Disability; those who are unable to work due to their reduced ability to detoxify their body; or those with a hyper-sensitivity, sometimes determined by genetic factors;

m) to establish the appropriate tools for Environmental Disability research;

n) to update the law 104/92 in order to include the needs of those with severe environmental disabilities and to ensure the provision of therapeutic aids, funds needed to change their home environment and to improve their integration into social life;

o) to offer home visits and health care for people with Environmental disabilities.

ART. 3. (Diagnosis and Prevention of Environmental Disability)

1. In order to offer early diagnosis and prevention of MCS, regions and autonomous provinces of Trento and Bolzano, through their health plans and actions referred in the Article 2 about the criteria and methodologies established by special act of guidance and coordination of the Minister of Labor, Health and Social Policy, point out to local health authorities the most appropriate operational measures to:

a) to establish a structured program which ensures basic and further training for medical personnel in relation to the Environmental Disability, in order to facilitate the identification of people suffering from conditions that could develop into an Environmental Disability, as in the case of allergy sufferers who risk to become MCS or in the case of cancer patients risking the sensitization to chemical agents after chemotherapy;

b) to prevent the complications and the monitoring of diseases associated with MCS, Electromagnetic Hyper-Sensitivity and poli-allergies;

c) to define the monitoring of people suffering from environmental disease or disability through a National Observatory.

2. For the realization of the actions referred to in paragraph 1, the local health authorities rely on centres accredited by the regions and by the autonomous provinces of Trento and Bolzano, characterizes by documented experience of specific diagnostic and therapeutic activities, as well as regional and provincial centres of reference, whose mission is to coordinate the network in order to ensure early diagnosis, including the adoption of specific protocols agreed at national level.

3. The local health authorities also undertakes to:

a) to call the primary care teams for the adoption of hospitalization protocols for people with Environmental Illness or disabilities to be implemented in cases of necessity and urgency;

b) to set up, in each autonomous province and in each region, a reference center for diagnosis and treatment of diseases involving an Environmental Disability;

c) to facilitate the training of the doctors involved in treating the Environmental illness or disability at international accredited Environmental health services in order to gain a clinical experience required for research, diagnosis and treatment;

d) to arrange home consultations from specialist and/or for laboratory testing by trained health personnel who know, depending from the kind of Environmental Disability, they have to decontaminate themselves from fragrances, traces of cigarette smoke, or, in the case of EHS people,  who have to take off their mobile phones;

e) to provide mobile dental units, made by compatible materials with the requirements of Environmentally Controlled Unit, and home health assistance and/or treatments for diseases involving an Environmental Disability.

ART. 4 (Economic support for food and personal care)

1. To ensure a balanced diet for people with environmental illness or disability there is a contribution for the purchase of special products or tolerated mineral water bottled in glass.

2. The Minister of Labor, Health and Social Policy, through a decree, establishes the ways and forms for the recognition of the contribution referred to in paragraph 1 and 2.1.

ART. 5 (Provision of drugs, nutritional supplements and therapeutic aids)

1. The National Health Service ensures the delivery of lifesaving drugs and medicines which contribute significantly to improving outcomes for people with Environmental Disabilities.

2. The National Health Service provides dental care, acupuncture therapy, motor rehabilitation, including home care, the oxygen therapy and hyperbaric chamber therapy for single use or collectively, if they are compatible with absence of fragrances and chemical fumes and not to any therapy which is demonstrably an improvement of psycho-physical condition of the patient.

3. The National Health Service also ensures the provision of free treatment aids for individuals with Environmental disabilities depending on their degree of disability. Expected therapeutic aids for people suffering from diseases or disabilities for Environmental chemical toxic overload include: sauna, cloth masks, masks with activated carbon filters, air and water purifying systems, cotton gloves, vented boxes for reading and for personal computers, other aids prescribed by a physician of the regional or provincial reference center in Article 3, paragraph 2. Regarding the expected therapeutic aids for EHS there are screened computer, screening paint and curtains for isolating the patient’s housing, his car or a special vehicle, and other aids if prescribed by a physician of the regional center or provincial reference in Article 3, paragraph 2.3.

ART. 6 (Building and Planning Rules)

1. The right to housing for people with Environmental Illness or disability who have an economic hardship is guaranteed through several measures:

a) tax relief of 55% on restructuring of the houses owned or rented for meeting the requirements imposed by the Environmental Illness or disability on the base of the advice of medical healthcare systems;

b) the development of housing at least every public building in the provincial capital made under the rules of environmentally controlled units or housing preferably positioned within the Natural Parks, and in any case far from sources of exposure to chemical and electromagnetic accommodation will be made green building materials, inert and odorless, radon-emitting and / or particulates with controlled ventilation systems and air purification means to isolate each unit;

c) the performance by the Civil Defense, mobile units made according to the principles of environmentally controlled units for their temporary stay in safe areas, the people with Environmental Illness or disability in the event of natural disasters or in cases where the subject must necessarily leave their home, for example, in case you need to step away from dangerous exposures around his house or the like.

1. The use of insecticides, pesticides and chemical herbicides is prohibited within a radius of 100 meters in urban areas and 500 meters in the agricultural context from the household of a person with MCS; compulsory notification about the time and the day of spraying at least a week before. These products have to be replaced by mechanical operations or natural products whenever possible.

2. The use of air fresheners, paints containing solvents and solvents is prohibited within a radius of 50 meters from the house of a person with MCS and in public offices (waiting rooms, sanitation, first aid, ambulances, etc.). These products are replaced by products to water, low emissions of volatile organic compounds and free of fragrances.

3. Installing Wi-Fi, Wi-Max, DECT, mobile phone or radio and television antennas is prohibited in the vicinity of the dwelling or employment office of a person with EHS or with Environmental disability incompatible with the exposure to biologically active electromagnetic fields and the Local Health Service (ASL) will ensure the measure the magnetic field in and around the house or work place that is acceptable for the patient in order to ensure that the EMF characteristics are unchanged over time, even if the exposures are below the limits stabled by existing legislation;

4. Municipalities prepare the plan of the roads, the traffic plan and release the permissions for commercial activities and installations of antennas depending on the presence of homes or workplace of people with Environmental Illness or Disability;

5. Municipalities regularly and frequently measure the EMF levels and air emissions, conducted by independent offices (with the collaboration of associations representing people with Environmental illnesses or disabilities) with prompt and immediate information to the target audiences;

6. The regions promote with incentives the creation of White Zones, preferably within natural parks, but not only, that are characterized by the complete absence of chemical contamination arising from industrial activities, crafts or agriculture, and by electromagnetic fields below 0,1 volt / meter, a limit considered safe for people with EHS.

ART. 7 (Protection of the right to work and study)

1. In order to protect the right to work of people with Environmental Illness or disability through the following measures:

a) adoption of appropriate aids in the workplace, including in particular those listed in Article 5, paragraph 3;

b) the use of detergents with low emissions of volatile organic compounds and free of fragrances for cleaning the premises for work-related and sanitation in the case of chemical sensitivity;

c) use of furnishings that Hexalin volatile chemicals in case of chemical sensitivity;

d) allocation in environments equipped with scrubbers and / or air exchange equipment that release fragrance of ink and volatile chemicals (eg, toner, etc.).

e) possibility of changing jobs, if incompatible with being an individual with a disability environment;

f) ban the use of wireless communication systems (Wi-Fi, cellular, DECT) in the offices in which there is a person with a EHS or an Environmental disability incompatible with biologically active electromagnetic fields;

g) maintenance of the professional group for those who have contracted an illness or disability causes of environmental work;

h) promote telework in all cases where it is advantageous for the person suffering from sickness or disability Ambientale.

2. In order to protect the right to education of people with Environmental Illness or disability are provided adequate solutions to stay in a school environment treated, both in building materials for those necessary to teaching, and should ban the use of fragrances and chemical cleaners in the case of chemical sensitivity, for example, or with the prohibition on the use of Wi-Fi systems or the prohibition to leave the phone switched on, even in stand-by, using, in severe cases, learning and monitoring from a distance.

ART. 8 (Exercising the right to vote for election and participate in competitions and private)

1. In order to guarantee the right to vote to people with Environmental Illness or disability, the right to vote by mail required by law of 27 December 2001, n. 459, is extended to the same subject, in accordance with the provisions in paragraph 2 of this article.

2. In order to ensure the right enshrined in Art. 51 of the Constitution for public office and access to public office on equal terms, if elected people with Environmental Illness or disability in the Parliament, municipal councils, provincial, regional or at other public bodies, they will be entitled to secure access in public facilities, arranging for the same protocol for amending the buildings, furniture and, ultimately, if protection policies (such as the smoking ban, a ban on wearing perfume, to keep cellular approaches, etc.. ) should not be sufficient, how to be prepared to participate in meetings and votes at a distance.

3. The individuals with Environmental Disabilities participating in competitions both public and private, have the right for decontamination measures of chemicals in areas reserved for competition tests.

ART. 9 (Report to Parliament)

1. The Minister of Labor, Health and Social Policy submit to Parliament an annual report on the state of knowledge and new scientific knowledge in the field of Environmental Diseases and Disabilities, with particular reference to problems of early diagnosis and monitoring of complications.

ART. 10 (Financial coverage)

1. The amount associated with the present law, estimated at 10,000,000 per year from the year 2009, provided for by reducing the appropriation in writing, the three-year budget for 2009-2011, under the special fund the current account of the estimate of the Ministry of Economy and Finance for the year 2009, to partially using the provision for the Ministry of Labor, Health and Social Policy.

2. The Minister of Economy and Finance will monitor the costs arising from implementation of this law, even for the purposes of Article 11-ter, paragraph 7 of the Law of 5 August 1978, No 468, as amended, and forward to the chambers, accompanied by relevant reports, any decrees issued pursuant to Article 7, second paragraph, number 2) of Law No 468 of 1978.

3. The Minister of Economy and Finance is authorized to make, by decree, the necessary budgetary changes.

On. Dott. Domenico Scilipoti

The Swiss city Zurich has tendered a MCS Housing Project. People with chemical sensitivity, commonly shortened as MCS (Multiple Chemical Sensitivity), will obtain a building biology home. Living in standard flats is nearly impossible. Substances from construction chemicals in concentrations tolerated by the healthy cause them unacceptable medical conditions. A toxic free habitation environment is required for stabilization and to be reasonably free from symptoms.

Currently such publicly supported projects for people with environmental illness exist only in the US and Japan. The City of Zurich is approaching this complex of problems with obligation and sympathy. They also hope to get innovative concepts for more public housing projects which could benefit many more people. The completion will require some time indeed, but the project looks promising because it is pro-actively supported by many professionals.

The search of a suitable estate for the project lasted months. The location for the house had to meet a set of criteria. Christian Schifferle, the President of the residential building cooperative HEALTHY HABITATION, went with specialists to inspect building sites again and again. Then it happened, the site was found. A dream came true for this very engaged Swiss.  How the MCS Housing Project will come true.

Beginning of November the City Zurich published a press release with detailed infos about the project. CSN sends its best wishes for success.

The estate authority of the City encourages habitation for severe cases of environmental illness. The construction of a new building at Rebenweg in Zurich-Leimbach was tendered according to a Swiss specific practice which allows to limit the selection to expert contenders. A path breaking project for an MCS compatible residential building with about ten or twelve small flats satisfying the highest building biology standards is expected. Teams of architects or planners had to file their bids by end of November to the building department. A panel will choose five teams from the applications received, who have to submit their drafts for the project by April 15, 2010. The decision will be made in May.

The City of Zurich assumes 5.000 cases of the severe illness MCS all over Switzerland. Often it’s impossible for them to find suitable habitation to live. Most minimal concentrations of chemicals trigger symptoms: vertigo, headache, limb aches, skin and respiration problems, chronic prostration. The one who is struck severely cannot work and finds himself increasingly separated from society, according to the City in its press release.

With this project of a pioneering building biology compatible house, the residential building cooperative HEALTHY HABITATION MCS, founded in 2008 based in Zurich, and the City of Zurich want to provide MCS suitable habitation and lebensraum. The site at the Rebenweg with its 1214 sq m has been evaluated thoroughly and most notably for Zurich conditions, the air quality is good.

Because the new residential building cooperative lacks adequate capital resources, the City is pre-financing the project competition with 150.000 Swiss Francs. The realization of the project is calculated with 5 million Francs. In order to achieve affordable rents, the coop aims to cover 1.5 million Francs by fund raising.

Interview Silvia K. Müller with Christian Schifferle

Christian Schifferle was interviewed by Silvia K. Mueller. He spoke of how the idea occurred to create a MCS housing project in Switzerland and which barriers yet to be overcome, but also what remarkable support it already has received.

Silvia K. Mueller: Christian, we all are very proud of you and enormous happy about the MCS housing project which getting into gear in Switzerland. How long did it take since you first had the idea for the project and what was your motivation?

Christian Schifferle: As I have suffered from environmental illness since childhood, that’s nearly 50 years, I first asked the city government of Zurich about accommodation for MCS cases 20 years ago. So it required several attempts and much perseverance. I crew up with lacquer and thinner and obviously I was ill, but NOBODY around took me seriously and I was dealt with as a malingerer.

SKM: You suffered from the existence of an outsider, into which you were forced?

CS: Yes, because from the very beginning I fought a lonely battle to survive. Being excluded marked me and made my into a political MCS activist who thinks spiritual but knows that it will take real activity to get anything done. Actions speak louder than pretty words. The plight of others and the lack of solidarity really hit me. So I founded the Swiss MCS League nearly 10 years ago. It seems MCS is my fate and my life-task, because I had this disease from childhood on.

SKM: What do you think prepared the City of Zurich for this innovative project, which last but not least will be beneficial for other building projects? Healthy habitation is not only trendy but also results in healthy and more powerful human beings. Was this idea decisive too for the City of Zurich?

CS: I started flyer campaigns in front of the Zurich City Hall and posted reports in noted local and countywide media. This made others affected by MCS to contact the authorities as well. Now the city takes us for serious and is interested to learn from our MCS housing project how to build healthier. So now we will offer this to the public media more often and I also think it is really great, what you do with CSN-Germany for us MCS sufferers. Even a foundation for MCS, which lies very close to my heart, turns out to be possible by the force of this housing project.

SKM: How did you manage to make the guys from the City of Zurich listen to you and that now, actually it can be said this way, it looks like a dream to come true for MCS sufferers?

CS: Simply it was due to the long-time pressure by the media reports. That’s great, what the city of Zurich is doing now. Special thanks should go to them for this pioneer project. Fortunately times have changed. Today we preach to the choir about HEALTHY HABITATION. We, the environmentally diseased have to make use of it to set precedents. Healthy houses for EI’s are physical facts which help others for a better understanding of this environmental illness and which lead to acceptance.

SKM: Who were and who are the biggest supporters for your project?

CS: First there were these approximately 45 members of a cooperative who acquired one or several shares of about 330 Euro and more each by now. A total of nearly 20.000 Euros, with that we had a good start. We should mention the two doctors Dr. Roman Lietha and Dr. Klaus Tereh who supported us from the early beginnings and who both are on the executive committee.

SKM: For some months we have severe emergencies in Germany and we desperately seek shelters for MCS cases who have been hit hardest and can’t find accommodation to survive. Will you offer accommodation for emergencies?

CS: Yes, the housing shortage of others struck by environmental illness touches me dearly. Of course we intend to offer emergency housing. Surely you remember what I experienced, when I searched a site for my old caravan. I never will forget it, not even the numerous nights which I spend outside in the woods, sleeping outdoors on a canvas chair. Thus we intend emergency apartments for environmental diseased and a fragrance free common room where MCS sufferers can meet. The house rules will be strictly MCS adapted.

SKM: Christian we wish you that the MCS Housing Project will be built quickly and without trouble in order to end your nomadic caravan life. What will you do with your caravan in the mountains, when you finally receive a MCS compatible home?

CS: As I am additionally sensitive to heat and suffer from the warmer temperatures in the lower regions, I will keep the caravan for the present. As many MCS cases are heat-sensitive, we also intend to provide MCS compatible emergency and holiday apartments in the mountains. Over the long term we aim to establish a system of holiday flats, because MCS diseased people hardly find suitable vacation homes. It would be nice to have such apartments at the seaside too. The Zurich MCS Housing Project obviously cannot ease all MCS accommodation needs but it should to be a pioneer impulse to originate many other MCS Housing Projects.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, November 2009.

Translation: BrunO