Archive for category ‘Fibromyalgia‘

Italian Parties united under the MCS cause

Italy - Chemical Sensitivity - victims need help and protection

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

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

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

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

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

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

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

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

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

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

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

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

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

Associazione Malattie da Intossicazione Cronica e/o Ambientale

(Association for Environmental and Chronic Toxic Injury)

www.infoamica.it


Related articles:

The links to the law proposals:

At the Chamber of Deputies

At the Senato

An Italian Law Proposal for Environmental Illnesses and Disability

Italian-Parliament

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

German Medical Association warns: “Swine flu vaccine” unsuitable for patients suffering from environmental diseases and other chronic multi-system illnesses

“Swine flu vaccine” unsuitable for patients suffering from environmental diseases

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

Martin Pall about genetic evidence and Multiple Chemical Sensitivity

Studies show chemicals act as toxicants in causing cases of Multiple Chemical Sensitivity; genes that metabolize these chemicals into other forms influence, therefore, susceptibility to getting MCS.

Guest post at Canary Report by Martin L. Pall, Professor Emeritus of Biochemistry and Basic Medical Sciences, Washington State University and Research Director, the Tenth Paradigm Research Group.

Dr. Martin Pall

Martin Pall: I have emailed the following as an open letter to the Denver Post in response to the article on multiple chemical sensitivity (MCS) that was published this weekend. I think the published article was generally a step forward in terms of public understanding of MCS. But the article left out a number of important things and this letter is an attempt to deal with some of those. I have asked them to consider publishing this as an Op-Ed piece, but wanted to make it available regardless of whether or not they opt to do so.

Thank you for writing this article on multiple chemical sensitivity (MCS), the term that is used in most of the scientific literature on this disease. There are vast numbers of people who have been afflicted in this epidemic of chemical sensitivity and I am sure that they are all thanking you. I also thank you for mentioning a bit of my work on this disease.

Some of your readers have already made quite a number of important points about MCS so I can focus here on just a few remaining issues. How do chemicals act in MCS? We know now that the seven classes of chemicals implicated in MCS all produce a common toxic response in the body, excessive activity of a receptor in the body called the NMDA receptor. So even though we have a vast array of such chemicals, we know how they can produce similar responses in people.

There is compelling genetic evidence that these chemicals act as toxic agents (toxicants) in the body. Four such studies have been published by three research groups in three countries. Collectively they implicate six genes as influencing susceptibility to MCS, such that people carrying some forms of each of these genes are more susceptible to becoming chemically sensitive than are people carrying other forms of the same genes. All of these genes control the activity of enzymes that metabolize these chemicals into other forms. Most of these studies show a high level of what is called statistical significance. In the Schnakenberg and colleagues studies, the chances of getting their results by chance are less than one in a million billion. So obviously, these are not chance results. What these studies show is that chemicals are acting as toxicants in causing cases of MCS and that genes that metabolize these chemicals into other forms influence, therefore, susceptibility to getting MCS. These studies, then, provide compelling evidence that cases of MCS are caused by toxic chemical exposure. Clearly they also show that MCS is a real disease, otherwise one would not be able to do such studies clearly linking the chance of becoming ill with MCS to the action of chemicals acting as toxicants.

Dr. Herman Staudenmayer has, for some 20 years claimed just the opposite. He claims that MCS is psychogenic, caused by psychological responses and according to him, is not a toxicological phenomenon. He has maintained this claim by ignoring contrary data wherever it occurs. He has ignored all of the evidence that chemicals implicated in MCS produce a common response in the body; he has ignored the roughly two dozen studies showing that MCS patients show objectively measurable responses to low level chemical exposures, responses that differ from those of normals. He has ignored all of the evidence implicating excessive NMDA activity in MCS; he has ignored the dozens of animal model studies on MCS; he has ignored over 50 studies that show that cases of MCS typically occur following chemical exposures; he has ignored the various other measurable physiological changes reported to occur in MCS. This has all been documented in my book “Explaining – Unexplained Illnesses” and in my article on the toxicology of MCS that is coming out next month in a prestigious reference work for professional toxicologists “General and Applied Toxicology, 3rd Edition”. It is also documented on the MCS web page of my web site: The Tenth Paradigm

Clearly you cannot do science by simply ignoring the existence of vast arrays of contrary data. However, Staudenmayer provides us with a couple of other tests of his views in his book, predictions that allow us to test his theory. He predicts that psychological factors are necessary and sufficient to account for the properties of MCS. This, of course, is contradicted by all of the evidence I referred to earlier. Therefore we should reject his hypothesis based on his own prediction. He provides a second prediction as well (the exact quotes from his book on these predictions are provided on my MCS web page). He predicts that the variation of susceptibility to MCS is not caused by variable responses to toxic chemicals. Clearly the genetic studies discussed above have shown that this is false and therefore, his hypothesis should be rejected for that reason, as well.

It is clear, from the above, that Staudenmayer’s construct was basically a house of cards. Now that it has collapsed, where does that leave us?

Firstly it leaves us with reversing the errors of the past. We need to start treating MCS sufferers as victims of unsafe chemical exposure. Many of them have previously been used, abused and discarded. If we live in a society where people are not disposable items we need to “do unto others as you would have others do unto you.”

We obviously need to start regulating chemical usage much more carefully, to avoid initiating new cases of MCS. It is imperative to develop tests for chemical activity in MCS, just as we have developed tests for chemical activity as carcinogens. Then we need to use these tests to effectively regulate the use of toxic chemicals.

We need to develop specific biomarker tests for MCS, tests that can be used to objectively confirm diagnoses initially based on subjective symptoms. I think we already have several very promising approaches to doing this in the scientific literature and a minimal amount of further study may be all that is needed to develop such tests.

We need to confirm that chemical avoidance is key to therapy and to develop other therapeutic approaches to work along with avoidance. The environmental medicine physicians and others have already made very important progress in this direction and I am optimistic that further progress can be made quickly. Such progress is relevant not only to the treatment of MCS patients but also to the treatment of clearly related diseases including chronic fatigue syndrome/mylagic encephalomyelitis and fibromyalgia. All of these diseases are caused by what I have called the NO/ONOO- cycle and the way to treat them, in my judgment, is to lower the activity of that vicious cycle mechanism.

Martin L. Pall

Professor Emeritus of Biochemistry and Basic Medical Sciences, Washington State University and Research Director, the Tenth Paradigm Research Group

Reprinted with permission from the author. Dr. Pall cautions the reader that he is a PhD, not an MD, and none of this should be viewed as medical advice.

Bill to Fund Neuroendocrine Immune Disorder Center of Excellence in New Jersey

State New Jersey

Hope for Patients with environmental illnesses? Bill to Fund Neuroendocrine Immune Disorder Center of Excellence in New Jersey 

The New Jersey Assembly has unanimously passed Assembly Resolution 202 to fund a Center of Excellence in New Jersey for Chronic Neuroendocrine Immune Disorders – which include CFS, FM, MCS and related illnesses. The bill is now going to the New Jersey House as Senate Resolution 133. 

The Research Center would be dedicated to ME/CFS, Fibromyalgia, Gulf War Illness, Lyme disease, Multiple Chemical sensitivity and other environmental illnesses 

 

SENATE RESOLUTION No. 133

STATE OF NEW JERSEY

213th LEGISLATURE

 

INTRODUCED JUNE 22, 2009

Sponsored by: 

Senator CHRISTOPHER “KIP” BATEMAN

District 16 (Morris and Somerset)

Senator LORETTA WEINBERG

District 37 (Bergen)

 

SYNOPSIS

Urges Governor and memorializes Congress to encourage establishment of research center in New Jersey dedicated to chronic neuroendocrine immune disorders.  

CURRENT VERSION OF TEXT

As introduced. 

A Senate Resolution urging the Governor and memorializing Congress to encourage the establishment of a research center in New Jersey dedicated to chronic neuroendocrine immune disorders. 

Whereas, Neuroendocrine immune disorders (NEIDs) currently include Chronic Fatigue Syndrome/Myalgic Encephalopathy, Fibromyalgia, Gulf War illness, Lyme disease, Multiple Chemical Sensitivity Syndrome, and other environmental illnesses; and 

Whereas, Chronic Fatigue Syndrome/Myalgic Encephalopathy, Fibromyalgia, Gulf War illness, Lyme disease, and Multiple Chemical Sensitivity Syndrome have been characterized as being as disabling as Chronic Obstructive Pulmonary disease, End-stage Renal failure, and Rheumatoid Arthritis; and as life-impairing as Multiple Sclerosis, AIDS, and cancer chemotherapy treatments; and 

Whereas, The mechanisms of transmission of NEIDs include parasite-borne infections; and 

Whereas, The similarity of symptoms of NEIDs imply a common pathophysiology of these illnesses; therefore, discoveries and advances made in the etiology and treatment of any one of these illnesses will be applicable and beneficial to the other NEIDs because of their common pathophysiology; and 

Whereas, An estimated 20 million American adults and children suffer with NEIDs; and 

Whereas, The time from illness onset to diagnosis of NEIDs is approximately three to seven years, except for Lyme disease which may take decades to diagnose; and

Whereas, There is mounting evidence of similarities of presentation and origins of NEIDs with Autism, Alzheimer’s disease, Multiple Sclerosis, Lupus, Parkinson’s and other autoimmune diseases; and   

Whereas, Having a research center in this State is essential to: promoting research into the etiology of, and therapeutic interventions for, NEIDs; establishing treatment protocols and providing patient care for all individuals in the State of New Jersey afflicted with NEIDs; serving as a repository for NEIDs research data, patient data and research publications; serving as a resource for NEIDs researchers by sponsoring scientific meetings and encouraging discourse among researchers; serving as a tertiary resource for both physicians and patients in their efforts to manage NEIDs; and advancing both NEIDs research and patient care by disseminating the most recent advances in NEIDs research, diagnostics and treatment protocols; now, therefore,

 

Be It Resolved by the Senate of the State of New Jersey:

1.    This House urges the Governor to encourage the establishment of a research center in this State dedicated to chronic neuroendocrine immune disorders. 

2.    This House respectfully memorializes Congress to encourage the establishment of a research center in this State dedicated to chronic neuroendocrine immune disorders. 

3.    Duly authenticated copies of this resolution, signed by the President of the Senate and attested by the Secretary thereof, shall be transmitted to: 

a.     Governor Corzine and the Commissioner of Health and Senior Services; and

b.    The Majority and Minority Leaders of the United States Senate, the Speaker and

Minority Leader of the United States House of Representatives, and to every member of the United States Congress from this State.

 

STATEMENT

This resolution urges the Governor and respectfully memorializes Congress to encourage the establishment of a research center in New Jersey dedicated to understanding and treating chronic neuroendocrine immune illnesses (NEIDs) such as Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME), Fibromyalgia, Gulf War illness, Lyme disease and Multiple Chemical Sensitivity Syndrome. 

It is estimated by the Centers for Disease Control and Prevention (CDC) that CFS/ME affects between one and four million Americans and that 85% of individuals suffering with this debilitating and disabling illness have not been properly diagnosed.  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.  Census data, and the incidence rate of CFS in the United States, projects that an estimated 28,000 to 30,000 citizens of New Jersey will suffer from CFS/ME.  The symptoms of CFS/ME include flu-like symptoms (sore throat, fever, chills, tender neck and armpit lymph nodes, unrefreshing or non-restorative sleep, headaches, and post-exertional malaise lasting more than 24 hours), as well as body-wide muscle and joint pain, cognitive impairment, and short term memory loss. 

The CDC reports that Fibromyalgia (FM) affects five million women, men, and children in the United States.  FM is a condition characterized by body-wide muscle pain, tender points, sleep disturbance, cognitive impairment (“fibro-fog” or “brain fog”), overwhelming fatigue, swelling, joint pain, non-restorative sleep and migraine headaches. 

According to the Research Advisory Committee on Gulf War Veterans’ Illnesses, Gulf War illness (GWI) is estimated to affect between 175,000 to 200,000 U.S. veterans, some of whom have been suffering for over 17 years.  GWI is characterized by multiple, diverse symptoms that include a combination of memory and concentration problems, chronic headache, unexplained fatigue, widespread pain, chronic digestive problems, respiratory symptoms, and skin rashes. 

The CDC has announced that Lyme disease is the fastest-spreading infectious disease in the United States, and that New Jersey ranks third in the nation for reported cases of Lyme disease. Yet, Lyme disease is seriously underreported in the United States.  Current literature suggests that co-infections associated with Lyme disease play a major role in precipitating chronic illness with symptoms that include flu-like symptoms, extreme fatigue, skin rashes, unexplained weight gain or loss, other endocrine disorders, urinary problems, sexual and reproductive dysfunction, gastrointestinal dysfunction, heart problems, joint pain or swelling, muscle twitching and muscle pain, peripheral neuropathy, vision and/or hearing problems, disorientation, psychiatric disorders, cognitive dysfunction, disturbed sleep, and poor balance. 

Multiple Chemical Sensitivity Syndrome and other environmental illnesses are estimated to affect 10% of the American population.  These illnesses have a variable, and overlapping presentation with other NEIDs, and have symptoms that include any combination of extreme fatigue/lethargy, muscle/joint pain, sleep disturbances, headaches/migraine headaches, sensitivity to light and noise, dizziness/vertigo, poor memory/poor concentration, nausea/digestive problems, sore throat, constant coughing, wheezing, skin rashes or burning/stinging eyes.