Evidence for the causes of environmental diseases have been around for a long time

The doctor and scientist Doris Rapp is one of those who not only practice environmental medicine, but has also made environmental medicine the most important thing in her life. The American spent two weeks in Germany. The reunion with Prof. Rapp was very productive and we were lucky enough to spend a beautiful day on the Moselle. Here is a small summary.

Researcher documented environmental disease

I met Prof. Rapp for the first time at a congress in Bad Emstal about 18 years ago. It was a crucial experience. In her presentation, she showed a video about a teacher who became ill from contaminated carpeting in the school. The teacher was filmed during a reaction to contaminated dust from the carpet. This video vividly conveys to the viewer what MCS is and what a reaction can look like. At that time I was at the very beginning of my own illness and had had similar reactions to certain pesticides. The teacher experienced convulsions and fell unconscious. I thought “my goodness, that’s me, that’s exactly like me, that’s what you have…“ After the lecture I spoke with Prof. Rapp and that was the beginning of an ongoing exchange of information and an interesting friendship. We met again at conferences in Germany, Holland and in the U.S., visited each other in Germany and the United States and exchanged e-mails. When I visited her in Scottsdale, she showed me one of her video archives. She had stored thousands of videos of children whom she had treated. They showed the patients during and after therapy and during testing of foods, mold, pollen, dust mites or chemicals. They displayed impressive evidence that can remove any last doubts as to the existence of environmental illnesses and allergies.

We can no longer ignore environmental illnesses

Dr. Binz and his wife invited the environmental doctor for this most recent visit to Germany. We had actually arranged to meet for a trip along the Moselle, which would start before lunch. We had a warm reunion and before we knew it we had already exchanged information and ideas and were in the midst of planning for future projects.

“I’m over 80 years old now and have no children, I don’t really need to be doing all this and I could be enjoying my peace at this age, but I see what’s going on, and I simply cannot remain silent. We have so many chemicals in our environment, in the food we eat, in the water we drink and the air that we are constantly breathing. They affect each of our body systems and we can no longer ignore this. Almost every second person in my country has cancer and that is just not acceptable”, says Doris Rapp.

“The politicians and the public must realize the impact the flood of chemicals has on us and no one should keep insisting that we do not know where all the increasing diseases that occur are coming from. The evidence is there. We have animal testing to prove it. That’s why, as a doctor, I ask: How much more has to happen before we admit to the real causes? I won’t accept hearing when one says, “Yes, but there’s nothing we can do about it.” Yes, there is, because you can educate yourself and there’s a hell of a lot you can do,” says Prof Rapp, who is enraged about the current situation.

Solutions are often very simple

Prof. Rapp is no one who can be at odds with the world and ignore the solutions. She is in the process of writing another book. “It will be a small book, only 30 pages. Every reader can easily understand how he/she can shape his environment in order to stay healthy. The tips in this book will not cost anyone a fortune, they can easily be implemented without major expense. It will help anyone who wants to change something and wants to improve his health. The doctor cites two examples:

“Many people react to foods, but are not sure towards which foods. Expensive tests are not necessary. I advise people to think about what they eat most, foods that they downright crave. Experience has shown that these are the foods that are eaten every day and most likely those which cause reactions. The solution: omit the suspected food for a week. You can test one food after another. This costs nothing! ”

“Some people live in a house that is contaminated with pollutants or contaminated by mold. My experience is that five out of seven people can improve their health by 70% if they obtain a high quality air cleaner that is capable of filtering hundreds of chemicals from the air in your home. Such a device may cost a bit, but I have often seen patients who got better over night. So it’s worth it if you are unable to directly move out of the apartment or house.”

The new book will be published this year, and Professor Rapp has authorized me to translate it into German. She also gave me permission to translate videos and other books into our language, contributing knowledge to allergy sufferers and chemically sensitive people in the German-speaking countries, helping them to find a way back into life.

A trip along the Moselle

During the drive to the historic Moselle wine village, Bernkastel, to Traben-Trabach and the drive back to Trier, Prof. Rapp was bursting with innovative ideas that we will begin to put into action in the next few months and they will benefit the environmentally ill in many ways.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, 12 September 2011

Related Articles:

• Scented laundry products emit hazardous chemicals through dryer vents
• Environmental diseases are not unexplained mysteries
• Damn, I do not accept that my life is over!
• School Integration for those with MCS possible

After much effort, the Agaplesion Diakonie Hospital in Hamburg, Germany has designed two rooms for people with MCS and multiple allergies. For many years, local support groups have worked tirelessly to try to integrate environmentally controlled hospital rooms in the hospital. For the first time ever, it is possible for people who suffer from environmental illnesses or severe allergies to be in a hospital for medical treatment which is tailored to their health issues.

Environmental rooms for MCS, the environmentally ill, and multiple allergic patients

Since February 2011, with the move into the newly built Agaplesion DIAKONIE Medical Center in Hamburg (formerly the hospitals, Old Oaks, and Bethany Elim), for the first time, a hospital has two special pollutant free rooms prepared for those with environmental allergies, and MCS patients. The special environmental rooms have been built with much care. They consist of a single and a double room. Both rooms are connected by a vestibule from the other station areas separated so that chemical-sensitive patients do not come in contact with the usual hospital chemicals and fragrances from other patients.

Medical treatment, surgery, obstetrics

The Agaplesion Clinic offers the two environmental rooms which have been specially prepared for the treatment of patients in the medical environment including the following hospital departments in the with an integrated spectrum:

• Internal Medicine
• Geriatrics (geriatric medicine)
• Diabetes
• Surgery, Hand Surgery, Plastic Surgery
• Gynecology, Obstetrics
• Orthopedics
• Anasthesia, Intensive Care

Criteria for inclusion in Environmental Room

There is a briefing which takes place through a doctor or the emergency room. During the first contact a message states that the patient wants a shot in the environmental room. The Agaplesion Clinic requires patients have medical evidence showing MCS (multiple chemical sensitivity), environmental allergies / intolerance (allergy multi-) and / or a present a chronic intoxication in the patient. A MCS and / or allergy passport is also useful to explain the need for inclusion in a special room environment.

Core Unit of the Environment Room

Rooms in conventional hospitals are not suitable for chemically sensitive patients. In general, the wards have PVC flooring and particleboard furniture. The environmental rooms in the Agaplesion Clinic have given much effort to create a plan that recognizes the needs of MCS sufferers with good air quality issues. The two environmental rooms were built with the low emission of air pollutants / safe building materials and furnishings, to ensure the safety for hypersensitive patients.

Some examples of the special features of the environmental room:

• Walls and ceilings with running Fermacell Green Line plates
• Massive exterior walls are lime
• Walls and ceilings painted with lime paint
• Rooms are equipped with a wall heater
• Floor is made of ceramic tiles.
• Window and door frames are insulated with hemp
• Doors are made of glass
• Exposure to electromagnetic fields has been reduced, including through the installation of power circuit breakers
• Furniture is made of enamel, metal, or stainless steel

The clinic staff shall ensure low-emission patient care:

• Attention is given to see if there are fragrance-containing and damaging products in patient vicinity.
• Patients are asked about their possible food intolerances to allergies, to drugs, disinfectants, medicines and anesthetics.
• A dietitian takes into account the patients’ food intolerances
• At the medical station information is summarized, and this can be viewed at any time by medical staff.
• The staff of the station is working together very closely with the support group „environmental illnesses MCS + CFS.”
• The room environment is cleaned with fragrance free detergents, but a disinfecting cleaning is essential to neutralize odors, so the patient is offered the use of effective microorganisms (EM 1).
• When necessary, patients may bring their own food which is kept in a refrigerator at the door. A kettle is also available there.
• The bedding of the entire hospital is fragrance-free but these patients are permitted to bring their own bedding.

Special measures for the benefit of environmental patients

• The use of fragrance-free and low-polluting products is offered to patients and their visitors
• The use of cell phones and smoking are not permitted in this area
• Living together requires all patients in the environmental room practice understanding, respect and helpfulness

Hospital life – side note

Important information for environmental patients and their physicians, that the Agaplesion Clinic is a hospital and not an environmental clinic. In a hospital procedures are regulated and special requests cannot be met. The Agaplesion Clinic breaks new ground by providing the two environmental rooms. The employees are trained on MCS and environmental illness, but they are dependent on cooperation between the patients, so that a smooth clinical work can be guaranteed. Perhaps at first patients won’t have the highest satisfaction, but patients should be understanding and possibly contribute constructive suggestions for improvement since this is the first attempt at providing environmentally safe rooms in a hospital. It is important for patients with chemical sensitivity (MCS) to realize that this is a new development at the clinic. For those with hyper-sensitivities, a stay at the hospital, despite careful selection of materials, initially may be fraught with problems because of outgassing and ecological matters.

The Chemically Sensitive are thankful for their commitment

The MCS support groups in Hamburg, which for years pursued the goal of a “MCS-friendly hospital room in a hospital” give hearty thanks and appreciation to the doctors, hospital planners, architects and government agencies that were involved in this project. All the best and much success for the safe environment in the new rooms at the Agaplesion Clinic!

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, 1 March 2011

Translation: Christi Howarth

Literature:

Agaplesion Diakonie Hospital Hamburg, newsletter: environmental rooms for MCS patients and the environment / multiple allergies, January 2011

Contact:

Agaplesion DIAKONIE Hospital Hamburg

Hohe Weide 17, 20259 Hamburg, Germany, Tel: (040) 7 90 20 – 0, Fax (040) 7 90 20 – 10 79, E-mail: info@dkh.de, Internet: www.dkh.de

Further CSN articles about MCS:

• Study could not confirm link between mental illness and chemical sensitivity
• Brain dysfunction in MCS – Multiple Chemical Sensitivity
• Research on Multiple Chemical Sensitivity (MCS)
• A politically inconvenient illness

Series:  “The Danish MCS Research Centre in the International Field of Vision”

Part III:

Until 2008 it was a common practice in Denmark for local authorities to grant severe MCS sufferers free aid under the service law, section 122, by giving them half mask respirators with activated charcoal filters.

In 2008 a severe female MCS sufferer had her application rejected by the local authorities for this respirator. This case ended at the Danish appeals board, which upheld the rejection on the following grounds:

“…there is no medical documentation for the chronic manifestations of the disease (MCS), its causality, lack of diagnostic criteria and treatment, as well as there is no medical documentation that the mask can sufficiently remedy functionality in her daily life.”

After this incident, a number of MCS patients had their grants for the respirators with filters also suspended by their local authorities, referring to the above ruling.

At the same time, there is no hospital ward in Denmark at all that is committed to examine, diagnose, treat and/or guide this group of severe MCS suffers. All instances refer to the Research Center for Chemical Sensitivities in Copenhagen, which was established in 2006 with minimal grants, but which does not occupy itself with MCS patients, except for using them as test subjects in PhD studies or projects.

The Research Center denies research effects of mask respirators on the MCS population

After the ruling by the appeals board, a great number of MCS sufferers contacted the Research Center to make them document the effects of the respirators with filters for the MCS population, since these are for the time being, the only efficient treatment option for those with MCS, besides the so-called avoidance strategy which leads to social isolation and thus to the possible risk of a subsequent psychological impairment due to isolation from the outside world in the MCS patient’s life. However, this isolation can be reduced by wearing a mask respirator.

To the MCS sufferers’ great astonishment and despair, the Research Center, however, published on its homepage that they were not going to research the effects of half mask respirators with activated charcoal filters on the MCS population. Their arguments, were among others, was that an investigation into the effects of mask respirators on MCS sufferers would require a clinically controlled study, and such a study must be both placebo-controlled and double-blind in order for the results to become reliable and useful.

Thus, the Research Center does not prioritize spending research funds on a study of mask respirators, but focuses instead on researching possible disease mechanisms and other therapy strategies. (1)

In this way, Danish MCS sufferers can see no prospect of anyone obtaining the documentation required by the Danish social system. Thus there is no prospect of being granted mask respirators, the aid which is extremely vital for sufferers – a crazy paradox not worthy of a modern welfare society.

Instead, the Research Center regards electroconvulsive therapy of MCS sufferers as interesting

Simultaneously with the above, the Research Center was following a male MCS sufferer who accepted being subjected to electroconvulsive therapy over six months (at first eight electroshock treatments over three weeks, and after that every two weeks), and on the basis of this one MCS patient’s subjective evaluation of the effect of this electroconvulsive therapy – a ”study” that, of course, was neither placebo-controlled nor double-blind – the Research Center published a scientific article: ”Electro- convulsive Therapy Substantially Reduces Symptom Severity and Social Disability Associated With Multiple Chemical Sensitivity: A Case Report. “Elberling et al. (2) with this conclusion: “In this case, a substantial, positive effect on symptom severity and social disability related to MCS was obtained by an initial somatizing patients course and maintenance treatment. Electroconvulsive therapy should be considered an option in severe and socially disabling MCS, but more studies are needed to evaluate if ECT can be recommended as a treatment for MCS.”

The limited research funds are gladly spent on Mindfulness therapy

Also, the Research Center is planning to spend its very limited funds to research the effects of Mindfulness based cognitive therapy on MCS.

In 2008 the Research Center performed a pilot project study in cooperation with the Center of Psychiatry, The Copenhagen University Hospital, where the title of this pilot project on the homepage of the Copenhagen University Hospital was ”Mindfulness based cognitive therapy of somatizing patients, primarily MCS patients.”

However, this title was in haste changed to: “The Effects of Mindfulness Based Cognitive Therapy with Persons with Hypersensitivity to Fragrances and Chemical Substances,” since MCS sufferers found out that the Research Center, in cooperation with the Center of Psychiatry, considered them mentally ill. Jesper Elberling, the then scientific leader of the Research Center, had meanwhile passed it all off as a “mistake.”

Right now, in continuation of this above-mentioned pilot project, a PhD study is being planned, to investigate the effect of Mindfulness on the MCS population. This is obviously one of those therapy strategies in which the Research Center gladly prioritizes its limited research funding, notwithstanding that Danish MCS sufferers again and again have told the Research Center that mask respirators are an efficient therapy strategy, whereas no one has ever heard or hears about MCS sufferers who have experienced any effects on their MCS from Mindfulness therapy.

Will the Research Center follow its own persistence and demand the placebo-controlled and double-blind studies in its coming research?

In the near future, the Research Center will start up its new study on the effects of Mindfulness therapy on MCS, and we shall then see if the Research Center will actually live up to its own demands and arguments that therapy effects require [DP1] a clinically controlled study, which is both placebo controlled and double-blind, in order for the results to become reliable and useful.

These demands apply hopefully not only for therapy forms, (the effects of which the Research Center does not want to document), such as half mask respirators with activated charcoal filters that are indeed vital to most severe MCS patients, and at the moment are the only treatment strategy that gives MCS sufferers the temporary possibility of being able to move about in the public domain, and which severe MCS sufferers experience as a highly efficient therapy strategy. However this highly efficient therapy strategy lacks – according to the Research Center – ”scientific documentation” which apparently nobody in Denmark wants to obtain.

Author: Bodil Nielsen, Denmark

Translation: Dorte Pugliese for CSN – Chemical Sensitivity Network

Series:  “The Danish MCS Research Centre in the International Field of Vision”

Part I: MCS – Multiple Chemical Sensitivity: A Report from Denmark

Part II:Changes of the international science of chemical sensitivity at the Danish Research Centre for Chemical Sensitivities?

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.

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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.

Several years have passed. We still had local self-help groups and met monthly. We kept contact by phone, because barely none of our members had internet. Most of them became ill by chemicals at the workplace. Though it is ten years ago, we still remember certain people or episodes. Last week when a woman with Chemical Sensitivity (MCS) and severe toxic injuries sent an article for the blog, in which she reported on the struggle with the German Federal Insurance Institution for Employees because of a scheduled Rehab, we returned to a case.

Marked by chemicals

We had a meeting of our local “Workgroup of Chemically Injured”. The guy was rather young but looked quite older. He entered the room escorted by his sister. She had to support him, because the young man lost his sense of balance. After the speeches we chatted. The Sister said her brother was already exhausted as he tried to listen and he is nearly unable to speak. Once he worked at a big car tire manufactory. Now he is a health wreck. In spite of his harrowing state of health, the social pension fund created stress and refused to pay. The Workers Compensation didn’t act any more cooperatively: they denied realizing a connection between the desperate state of health and the chemical exposure at work. Though he was on the ropes, the young man was not willing to accept the experience of injustice by these insurance companies in addition to his physical suffering.

Brain damage by solvents

His sister told that he has gone through brain surgery. They hoped to manage his vertigo and his brain symptoms with a demanding operation. There was no improvement – rather the opposite. Most of the day he stayed in his room and watched videos. Contact with his friends was nearly broken for two reasons. The young man was no longer capable of conversation and he was unable to drive his car to his friends, who lived in neighboring locations. Friends who still came to visit him in the beginning were completely shocked by the bad health of their peer and could hardly deal with the sight. This few visits were the result, and then nobody came again.

Injured by chemicals at workspace

But for all of that the family of the man endeavored to enhance his state. The sister said that his condition isn’t always the same, so she hopes that there will be some turn for the better. She asked what the family may do to achieve a bit of health stabilization. At that time, my first advice to her was to arrange the man’s room to be absolutely free from chemicals and to abandon plastic materials completely, because he had become ill from synthetics, solvents and rubber.

The sister listened to my detailed explanations, how a clean room for a chemically sensitive person should look like. After that she rated the room totally inappropriate, in which the former quite vital young man spent nearly all of his time. There he had a TV, a video recorder, many video tapes, carpeting, a normal foam mattress in the bed and vinyl wallpaper. A room like the ones of many millions other young folks.

Aid by the family

The family was serious about it. They wanted to see the young man healthier again. They dedicated all their efforts. Two rooms at ground level were arranged for him. They tiled the floor and finished the walls with safe natural paint. They obtained a good air purifier, a mattress from natural material and made everything compatible.

Scarcely two months later the sister called me by phone. As she started to speak, the depression in her voice had completely disappeared. It is unlikely to believe, but her brother feels better worlds apart. At Saturday he even was able to visit his friends in the neighbor town riding his car without any help. She said, the whole family is overjoyed, because they didn’t consider such a recovery possible any more. The young man only became dizzy, when he was exposed to certain chemicals. He learned to detect such situations and avoided exposure. He left instantly when he realized them. Step by step his former vitality returned. The sister called more often and proudly reported on his further progresses.

Rehab in face of the delicate state of health

Then there was another call. Completely upset, the sister told that her brother received a letter from the social pension fund. He’s scheduled for a rehab. They rang up to tell the official from the German Federal Insurance Institution for Employees about the state of the young man and that he needs a chemical free environment and organic food. There was no understanding: he was liable to cooperate or otherwise his entitlement under pension scheme will be lost. The result of a call to the specified rehab clinic was that nothing there met the requirements for the young man’s health. Nevertheless he had to go into the regimen, they wanted to estimate his working ability and stabilize him, as they said.

Bring a wheelchair

At the next call, the voice of the sister was nearly dead. She told that her brother really had been in those rehab. She picked him up yesterday. He was there for nearly four weeks. When she phoned in, she was not permitted to speak with her brother. This was not beneficial for the therapy, they said. The day before yesterday they called her in the morning. She was told she could pick up her brother and may please bring a wheelchair.

Anger and pain

The sister reported that she broke out in tears as she came for her brother. No trace was left of the previous improvements in his health. His state was worse than before all the measures which had been taken by the family with great efforts and financial costs.

She had to carry her brother into the car helped by a male-nurse. She asked the nurse what had been done with her brother in the rehab. He shook his shoulders and turned his view to the floor. At this moment she had boiled with rage and went into the building then and closely looked at it. Heavy chemical smell from carpeting engulfed her. It’s just newly installed, so it still smells, the nurse told her. She asked to be shown to the room. Carpeting, smell of disinfectants, particle board furniture etc.

The refectory, in which her brother was urged to take his meals, was more than 100 meters away. To reach it he has to pass a long hallway without windows for ventilation, floored with carpeting which badly smelled from chemicals and adhesives. He repeatedly begged to be allowed to have his meals in the room, which was not allowed. Other patients even had offered to bring him the meals to save the staff from extra work. The directive was not changed; the young man had to resort to the refectory for the meals, where he additionally was exposed to perfumes, after shave and other scents. As he became unable to make it through the long hallway afoot, he got a walking frame, shortly later they gave him a wheelchair.

The indoor pool of the rehab was near the brother’s room. The odor of chlorine flooded the whole area. In spite of his heavy reactions to chlorine he had to take part in the exercise therapy in the swimming pool for several times. He was exempted from participation when he nearly “drowned” in the pool, because of a reaction.

In a strained voice the sister said after her report: “They have not made my brother healthy, they have executed him and now I know why I never was allowed to have a word with him. Any health success he had before the rehab therapy is destroyed.”

Health decline by rehab

This is no isolated case even if it is in his consequences one of the most worst cases ever reported to me. There are no rehab facilities adapted to the needs of chemically sensitive patients in Germany.

If patients with Chemical Sensitivity scheduled for a rehab ask about the local environmental conditions and explain that they cannot stay in such premises because of their reactions to chemicals, they were blamed for a lack of cooperation.

Some chemically sensitive persons had to accept a substantial decline of their health, because they were scheduled to rehab clinics which offered neither organic food nor chemical free environmental conditions, and where the smell of scent agents and disinfectants flooded the whole building.

Many chemically sensitive retirement pensioner aspirant tried to hold out – or managed somehow to hold out, to avoid being alleged for having not “cooperated”. These chemically sensitive patients feared to forfeit their pension claim. An enhancement wasn’t ever reported in a single case. On the contrary: what the chemically injured persons had regained by many restrictions and a environmental controlled living space was lost.

Finally? Hopefully

But it seems the German Federal Insurance Institution for Employees sees reason to show some understanding. A single mother struggled until the Insurance understood. Finally, the rehab measure for which they put her under heavy pressure was withdrawn, accepting her MCS and due to the lack of a suitable clinical facility for chemically sensitive patients.

Author: Silvia K. Mueller, CSN – Chemical Sensitivity Network, April 6, 2010

Translation: Thank you very much to BrunO!

Proof-reading: Thank you very much to John!

Related articles:

• The psychogenic Thesis for environmental diseases – No value for Science, destructive for legal Rights
• How to become a MCS-Activist in less than 365 days? Have look at Spain!
• Medicine needs shift in paradigm to focus on Environmental Medicine
• The last few months of the life of Angelika S. who was chemically sensitive

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

44 year old Geli H. from Essen (Ruhr region) suffers from severe MCS. For weeks she and her husband have been desperately seeking medical aid. He was allowed to take off from work to care for his wife. Geli’s food intolerance left her with only one food.  Everything else causes a dangerous closing of her throat. She’s hit by vertigo, a choking fit, severe headache, and gastric spasms. The Inside of her mouth looks like raw flesh. Even if she eats a tiny little bit, all of her body may turn red and she cannot breathe.  An air purifier runs all day and night. After a few sips of water, she collapses. Without competent help, she faces death.

Because of her reactions to chemicals, she should not leave the house. In her despair she tried to get help in a local clinic. At the entrance she was already exposed to disinfectant fumes, perfumes, scents from inside and cigarette smoke from patients smoking at the entry. The severe reactions of her body led her husband to bring her back home.

They asked several clinics all over Germany. The last spark of hope, a nearby anthroposophic clinic in Witten-Herdecke, was fully booked. Another declared it could not take responsibility for such cases. Doctors didn’t make things better. One environmental medicine doctor said he cannot help because there is no environmental clinic near her. Another recommended a hotline in Berlin that operates only twice a week. There seems to be no need for emergency help in Germany.

One doctor topped it all with the well known psychosomatic theory of MCS. He recommended a university hospital. Geli has pathological blood results and her immune system is down and this doctor recommends psychotherapy where she has to get used to substances which ruined her body. Is there no way to sue such doctors?

Geli is in grave danger. She might not survive a flight to the Environmental Health Center in Dallas. She quickly needs special hypoallergenic nutritional infusions. It takes only a licensed doctor sympathetic to environmental medicine for diagnosis. A willing general practitioner could apply the IV’s at her home.

If you read this in the UK, please remember Sophia who died in 2005 in a mental hospital because doctors refused to accept the organic nature of ME/CFS.

Is that the cure for all environmental disease cases?

Author: BrunO for CSN – Chemical Sensitivity Network, December 11, 2009

• German Article about Geli’s Case
• Japanese Translation of the article

German Article about Geli’s Case

The last few months of the life of Angelika S.

Six months ago Angelika S. was still doing fairly well. She lived with her family in a suburb of a German town. She loved animals and had a small animal hostel. She also cared deeply about other people.

I got to know her through my cousin who often visited her and mentioned four months ago that Angelika too had strange symptoms similar to my own. Suddenly, she didn’t tolerate fabric softeners – the shower gel of her family, the deodorants and a lot more now made her sick. My cousin told her about me and so we got in touch, first writing letters. She was looking for informational material about chemical sensitivity and I was sending it to her. About the same time I heard that she couldn’t tolerate the furniture and the flooring anymore and was sleeping on the kitchen floor on blankets. From now on everything went incredibly fast…

Nearly every day my cousin called me to report new intolerances. Because of the heat in August, she could only sleep outside on the patio on a kind of futon mat made from compatible materials. Then even this wasn’t possible anymore for her…

Calling an environmental doctor she was told, she would have to wait several weeks (vacation etc.). Then I could contact to her on the phone too. She was able to talk only five or seven minutes, because in addition now she had become electromagnetically sensitive.

Then I gave her the advice to drive to a nature area in her neighbourhood. She did so with her husband each morning between 7 and 8 o’clock. There she did much better. But it speeded up:  difficulty in breathing… heart palpitations …. decreased muscle tonus in the arms and legs …. pulmonary problems …. everything took a turn for the worse.

Since she couldn’t use the phone anymore, I talked to her husband instead. In September he brought her to an abandoned campsite of his club and they slept in the car…in small cars…she in her car and he in his car because his one was contaminated with chemicals from his work. During the daytime he had to drive 25 kilometres to his workplace and to leave her alone there. In the evening he was cooking the meals for her and brought them to her… again 25 kilometres … The nights in the car… bad for the joints.

Then her husband called the environmental doctor again and got the advice to arrange a clean room for her in their house. He should tile the room and keep her in it. So he removed the floor, tiled the room and painted the walls with safe chalk paint. Angelika still was at the campsite, alone during the daytime and it started to get colder…Two air purifiers where bought from PureNature, oxygen for the ride to her home… and then the attempt to bring her back to the new safe room. During the whole time her husband had to take time off from work which got more and more difficult. They had to worry that he would lose his job too.

When she was back at home, my cousin couldn’t come for a visit anymore. Also no one from the family could come to see her. When her son came, she had to escape, and had no contact to her beloved grandchild.

I have had Multiple Chemical Sensitivity for over ten years now, but I had the chance to grow into the situation and I know what isolation means. The soul suffers…tears come…sometimes depression…and when there is no or little hope and you do not really know what will happen to you…then everything is even worse.

But Angelika was learning fast and tried to avoid everything which made her sick; she ate organic food and changed everything.  But it takes time until all smells are out of a general household.

I supported her as much as I could by calming her down and providing her with information…Then the appointment with the environmental doctor came…He said that she has full blown Multiple Chemical Sensitivity and suggested a therapy only of B12 shots for six weeks daily with added B1 and B6. She started his therapy, but everything got worse.

Angelika had reached the end stage of Multiple Chemical Sensitivity in only six months.

When she still wasn’t doing so badly – that was in September this year – I had offered her a invitation to come to my place and try it here, but she wanted to try first the tiled room at home.

Last Saturday her husband called me to tell me that they had to drive to the forest or to a graveyard each night.  Otherwise she wasn’t able to breathe…The heating period made the air in the town intolerable for Angelika. Each night she suffered from heart palpitations, shortness of breath and many more symptoms.

I told them to try to come over to me and so they arrived at nine o’clock Saturday, October 25th.

The last days of the life of Angelika S.

She arrived totally exhausted with a mask and heavy use of oxygen on the ride. We placed her on the porch.

For me her clothes were totally contaminated from her environment. I had to keep distance. Then she wanted to change her clothes.  I offered her some of my clothes, but she couldn’t tolerate them. I had used an unscented safe washing powder which I tolerate very well.

To let her into the house we had to shower her in the evening. I found old jogging pants of my husband’s and a cotton pullover; both had not been washed for a long time, and socks…

But on what should she sleep? She couldn’t tolerate wood anymore, no natural wood furniture. It didn’t matter if it was old or not. She even couldn’t tolerate the very old closet in the room we arranged for her. She wanted to sleep on the floor on linen which had not been washed for a long time and on a blanket which had been hanging in the attic for a long time too.

The windows to the forest were open all night and all day…

We live here in Germany in a wide forest area at Vogelsberg and so she was doing well with the clean air. However, last Monday it got damp and foggy and we had bad weather.

Her hope vanished that she would slightly recover here, but she wanted to try.  She didn’t want to go back…

Either she lay or sat on the porch …. I cooked for her, gave her much water to drink …. tried everything possible to help her to restore her soul and mind …. told her about CSN and other sufferers who had recovered by avoiding substances and by isolating themselves. Each day we left for a walk in order to get some fresh air. So far she was still able to walk for an hour.  On Tuesday, though slowly, she was able to walk until a car passed by and left exhaust emissions, which affected her in spite of her mask.

Then she said she couldn’t live a life as I do, without people around her and in isolation for such a long time and then it got worse and worse.  She had no hope that she could stay here any longer because she couldn’t tolerate the damp air especially during the nights.  She refused to eat or drink anymore.  She was in despair and her mucous membranes were – as in her home – bright red and swollen.

She had to leave, but where to go????

We were considering many possibilities: Switzerland, North Sea…back to the campsite because there is not that much forest in its neighbourhood…setting up an aluminium shed…but how to heat it…and so forth…

On Wednesday at 3 o’clock p.m. the son of my cousin came with a big car which was safer than her car. Her husband and we said goodbye…

They didn’t know where to go…they didn’t know…what to do….so they first drove back to her tiled room and then to the close-by nature site.

She survived the ride at five degrees Celsius inside the car and then I heard nothing from them anymore.

On Thursday afternoon when her husband had to go to work and go shopping for food, she put an end to her life!  I did not learn of it until Friday evening because it was the wish of her husband.

We are in deep grief about this lovely person…a human…who still could be living if there was accommodation for cases like hers in Germany. If there was just one clinic to go to which had clean rooms as at the Environmental Health Center in Dallas / USA. If we just had doctors who could diagnose chemical sensitivity in time.  If we just had support for the relatives who don’t know why all this happens.

This ignorance and intolerance about environmental diseases MUST stop. These are diseases that have been described by scientists like Prof. Martin Pall and others.  It’s well known what these diseases DO exist.

I have seen two suicides since last July.

• Two precious humans who didn’t know what to do because of their boundless despair.
• Two humans who felt as a burden to their families.
• Two humans who had worked hard all their lives.

We lament Angelika S. and we are shocked because of the lack of help for people with severe Multiple Chemical Sensitivity.

May the God of solace comfort the suffering of the relatives and may they find hope that their suffering is not forever…

That it will not be like this forever…

That the suffering stops some day…

And that some day there will be a recovery of all things lost…

Authors: Wolfgang and Mona B., Silvia, CSN – Chemical Sensitivity Network November 2009

• Japanese Version: “The last few months of the life of Angelika S.”
• Italian Version: “The last few months of the life of Angelika S. ”
• Spanish Version: “The last few months of the life of Monika S.”

Press release of the German Professional Association of Environmental Medicine (Deutscher Berufsverband der Umweltmediziner – DBU)

from 26. October 2009

Swine flu vaccine is unsuitable for patients with environmental diseases and other chronic multi-system illnesses.  Pandemrix® poses substantial health risk with respect to mass immunization programs due to the lack of proof of safety.  Because of the producer’s release from liability by the German Federal Government (BRD), the risk of adverse reactions and/or permanent damage due to the vaccine rests with the patient.

The German Professional Association of Environmental Medicine (DBU) has, in spite of press releases from the BRD, the Paul-Ehrlich-Institute, as well as the vaccine producer’s assurances of safety, serious concerns relating to Pandemrix® (GlaxoSmithKline), the only vaccine which has been approved for mass vaccination by the BRD.

The DBU discusses at this point neither the medical use of immunization in general nor the necessity of such measures in the, up until now, mild course of the swine flu pandemic.

Our criticism is directed only against the pandemic vaccine Pandemrix®.

• There exists considerable doubt as to the effectiveness of the vaccine: during the licensing phase, the vaccine tested had a 40% higher portion of virus antigen (5. 25µg) than the vaccine (3.75µg) now being delivered. An unequivocal consensus has not been reached as to whether the vaccination should be given once or twice a season !!!

• There exists considerable doubt concerning the safety of the adjuvanted active amplifier since it is being used for the first time. The vaccine contains 27.4mg AS03, an emulsion of polysorbate, squalene and tocopherol. Sufficient studies are lacking, because in the test phase, only the development of antibody titers was determined as a surrogate criterion, and not any potential adverse reactions.

• The producer as well as government agencies have concealed the fact that squalene, if used subcutaneously or intramuscularly is an inflammatory immune activation immunogen, unlike when ingested. (Squalene is, among other things, for example, naturally contained in olive oil.)

• Autoimmune diseases can be provoked by squalene; already existing ones can be activated. Squalene has been connected with the emergence of Guillan-Barré Syndrome (GBS) and is now considered a trigger for Gulf War Syndrome (GWS). In animal studies squalene brought on rheumatoid arthritis.

• Squalene from food sources is mainly incorporated into membranes in the body. The production of squaline antibodies resulting from an immunization sets off chronic inflammation of the membranes, which explains diseases such as Gulf War Syndrome and also degenerative neurological diseases such as Multiple Sclerosis, Amyotrophic Lateral Sclerosis, Chronic Inflammatory Demyelinating Polyneuropathy and Guillan-Barré Syndrome.

• The delivery of vaccine in multiple dose ampules is obsolete. In single dose ampules the mercury used for preservation, as in thimerosal – which is included in Pandemrix – would be unnecessary.  Also, mercury has been proven to set off autoimmune diseases.

• Since the vaccine has not been tested on either young children or pregnant women (Ethics Commission objection), the call to give preference in the first phase of vaccination to precisely this particularly endangered segment of the population represents an improper and totally unjustifiable field test.

• The vaccine poses a higher risk than the swine flu itself for patients with environmental illness and for patients with compromised immune systems (e.g. AIDS).

• The vaccine producer GlaxoSmithKline (GSK), according to the contract with the BRD, is largely exempt from liability. In case of damage from the vaccination, the affected vaccinee would have to sue the government and therefore the country of Germany, usually a futile exercise.

• To avoid the trap of liability, the doctor giving the vaccination must meticulously inform the patient of all risks concerning the vaccination and the vaccine. It is recommended to give this information in the presence of an assistant and to have it be confirmed by the patient’s signature. The explanation should also include the liability features. Also the indication that other, lower risk vaccines are available in Europe and that due to a faulty decision by the German government, they are currently not available to the German population. This information should definitely be included in the explanation.

For general and environmental health considerations the DBU urgently advises against carrying out a vaccination with Pandemrix® !

Dr.med. Hans-Peter Donate

for the board of the German Professional Association of Environmental Medicine (DBU)

Translation: CSN – Chemical Sensitivity Network

Neurons lacking in plasticity are a factor in neurodevelopmental disorders such as autism and mental retardation. Essential nutrients help maintain normal neuronal plasticity. Nutritional deficiencies, including deficiencies in the long chain polyunsaturated fatty acids eicosapentaenoic acid and docosahexaenoic acid, the amino acid methionine, and the trace minerals zinc and selenium, have been shown to influence neuronal function and produce defects in neuronal plasticity, as well as impact behavior in children with attention deficit hyperactivity disorder. 

Nutritional deficiencies and mercury exposure have been shown to alter neuronal function and increase oxidative stress among children with autism. These dietary factors may be directly related to the development of behavior disorders and learning disabilities. 

Mercury, either individually or in concert with other factors, may be harmful if ingested in above average amounts or by sensitive individuals. High fructose corn syrup has been shown to contain trace amounts of mercury as a result of some manufacturing processes, and its consumption can also lead to zinc loss. Consumption of certain artificial food color additives has also been shown to lead to zinc deficiency. Dietary zinc is essential for maintaining the metabolic processes required for mercury elimination.

Since high fructose corn syrup and artificial food color additives are common ingredients in many foodstuffs, their consumption should be considered in those individuals with nutritional deficits such as zinc deficiency or who are allergic or sensitive to the effects of mercury or unable to effectively metabolize and eliminate it from the body. 

Reference:

Dufault R, Schnoll R, Lukiw WJ, Leblanc B, Cornett C, Patrick L, Wallinga D, Gilbert SG, Crider R., Mercury exposure, nutritional deficiencies and metabolic disruptions may affect learning in children, Behav. Brain Funct. 2009 Oct 27;5(1):44.