Quality management is required in the diagnosis of fibromyalgia and MCS

There is a connection between fibromyalgia and MCS confirmed by studies. Patients suffering with fibromyalgia (FM) have reported frequent complaints which are outside of their problem area of the musculoskeletal system, and chemically sensitive patients, in addition to their reactions to low doses of chemicals, repeatedly experience pain in different body regions. Fibromyalgia is commonly regarded as an atypical soft-tissue rheumatism. The diagnosis is made mainly by an examination of 18 pressure sensitive parts of the body, called tender points. Scientists from Scandinavia reported more than ten years ago that there is an overlap between MCS and fibromyalgia, which has major relevance for the medical diagnosis for patients. A recent Canadian study in February 2010 confirmed this result. The authors of this study, in a medical journal, appealed for adequate education and specific related information in the health field and to the public in order to improve the prognosis for patients.

Pain on pain

Patients with fibromyalgia or chemical sensitivity often experience pain which they describe as a “toothache all over the body.” Scientists from Scandinavia reported in the late nineties of the existing relationship between these two diseases.

What exists for fibromyalgia patients also exists for MCS patients?

The objective of a pilot university rheumatology study was to determine how often MCS occurs in patients with Fibromyalgia. The research team designed a questionnaire decided whether the patients indeed also had MCS. The physicians used criteria from a new study by using an immunological profile of patients who could be identified with this disease. Patients responded with a yes or no response to confirm the presence of 48 FM-related symptoms. (1)

Study finds link between MCS and FMS

The results of the study were published in the first half of 1997 in the medical journal, “Scandinavian Journal of Rheumatology.” Thirty-three of the 60 patients with fibromyalgia fulfilled the criteria for MCS. Eleven of those patients met more restrictive criteria, which demonstrated the high severity of chemical sensitivity. In addition, scientists found that the sensitivity symptoms and reactions of the triggering substances that were most frequently cited by the FM patients were similar to those reported by MCS patients in other studies. A chemical sensitivity existed in more than half the patients with fibromyalgia, thus the Scandinavian researchers concluded that MCS may be an additional symptom in the complex spectrum of fibromyalgia.

Canadian study confirmed the simultaneous existence of MCS and FMS

The fact that both conditions exist simultaneously has been affirmed by studies in recent years. The targeted diagnosis should be considered because of the potentially dramatic effects on the sufferers of MCS and FMS. This was evident in a study of the environmental clinic (EHC) in Toronto. The Canadian researchers studied 128 patients for the presence of MCS, CFS, and FMS, and identified the impacts in their everyday lives. Eight of the 70 patients received the MCS, CFS, or FM diagnosis, while the remaining patients had two or three overlapping diagnoses. What a great impact in the study of environmental disease for patients and readers of the magazine for Canadian GP, in the February 2010 edition. Most of the study participants (68%) had to leave work, on the average of three years after the onset of their symptoms due to their illness. (2)

Relevance for the diagnosis of environmental and mainstream medicine

The studies of 1997 and early 2010 reveal that medical practices must take a thorough medical history of the patient and make an appropriate diagnosis at the onset of one of these two diseases of FM or MCS. After the clinical results indicate a patient has MCS, then there needs to be a clarification whether or not the patient also has fibromyalgia. This can be detected with little effort by any doctor by checking the 18 tender points. At the same time, fibromyalgia patients must be asked about a hypersensitivity to chemicals which is likely, despite the lack of the study results being integrated into mainstream medicine over the last ten years. It is extremely important for rheumatologists to be familiar with the diagnosis of MCS for their FM patients. The prognosis for fibromyalgia patients significant improvement could be then specifically targeted with treatments and appropriate prevention strategies which deal with the triggering affects of chemicals.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, August 2010

Translation: Thank you to Christi Howarth.

Related articles:

Unanimous Vote for Research Center for MCS, CFS, FMS, GWS in New Jersey

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

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

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

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

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

Assembly Resolution 202 passes unanimously

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

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

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

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

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

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

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

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

Advocates Extraordinaire™ & community support

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

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

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

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

NEI Center set to open by 2012

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


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

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)


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



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.


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:


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.


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


Eva Caballé is the author of the recently published book in Spanish Desaparecida. Una vida rota por la sensibilidad química múltiple (Missing. A life broken by Multiple Chemical Sensitivities) published by El Viejo Topo, Barcelona, Spain, 2009.

Interview by Salvador López Arnal, November 2009 :

“Yes, there is something hidden in this silence. It is the interests of the chemical and pharmaceutical companies so that people won’t know that their products are causing new and terrible illnesses like Multiple Chemical Sensitivities (MCS). Actually, recently it has been demonstrated that MCS is not a psychological illness and that old studies that said so were fabricated to protect the interests of the chemical and pharmaceutical industries”.

Eva Caballé

Eva Caballé is a 37 year-old Barcelona economist who lives with MCS. She was a bank employee and was a member of the rock group Lefthanded and now is the author of the recently released book (in Spanish) released by the publishing house, Libros de El Viejo Topo, Desaparecida. Una vida rota por la sensibilidad química múltiple (Missing. A life broken by Multiple Chemical Sensitivities). In the book’s introduction, Clara Valverde, says: “…But Eva is not weird. It is known that 0.75% of the population now lives with severe MCS and that up to 12% have mild or moderate MCS. All those people who are bothered by smells, those are part of that 12%. But most doctos and the majority of society are not aware of this and that is why it has taken Eva so many years to receive the right diagnosis. That is why Eva only has the help of her immediate family. That is why there are no demonstrations about this out on the streets nor her case is on the front page news.”

Eva Caballé is also the author of the blog “No Fun”. She says: “No Fun is a blog about Multiple Chemical Sensitivities, Chronic Fatigue Syndrome/ME and Fibromyalgia with information and advice for people who are sick and for anyone who wants to live a healthier life free of toxics”.

López-Arnal: Let’s start with a definition. What is MCS?

Eva Caballé: MCS is an aquired chronic illness, not a psychological one, which manifests itself with multisystemic symptoms as a reaction to a very small exposure to chemical products, normal everyday chemicals but unnecessary ones, like perfumes, air fresheners or laundry softeners.

The symptoms, which are chronic and they become acute in a crisis, include fatigue and respiratory, disgestive, cardiovascular, dermatological and neurological problems.

MCS is a syndrome with three grades of severity, so not all of us who are sick suffer the same level of disability and isolation.

It is an illness which has been known since the 1950s, but it has yet to be recognized by the World Health Organization (WHO), despite that there are more than 100 research articles that support the organic basis of MCS, that the number of people affected is increasing rapidly, at a younger age, and that the European Parlament includes MCS in the growing number of illnesses related to environmental factors.

LA: You say that MCS is not recognized by the WHO despite the number of scientific articles that support the organic basis of this illness. Why do you think that the WHO is so sceptical, so cautious?

EC: We know that the WHO has been debating the MCS issue for years. But the process of recognizing the illness is taking longer than usual due to the pressure that the chemical and pharmaceutical industries are putting on the WHO, as they are not interested in having it known that they are directly responsible for this illness.

Without going any further, in Germany, where MCS is recognized as an illness, the industries continue exercicing their control through tools like Wikipedia. This was denounced by the CSN Association in an article which I translated and published on my blog.

The article about MCS in Wikipedia in German is edited each day, sometimes every few minutes, because the administrators of Wikipedia, who have interests in the industry, veto the information trying to make sure that MCS is not known or if it is, that it be thought of as a psychosomatic illness.

LA: You also say that the number of people with MCS is growing rapidly. Can you give us any data to illustrate this?

EC: I am quoting Dr J Fernández-Solà (an Internal Medicine specialist from the Hospital Clinic in Barcelona) who, in an interview that was done with him at the beginning of this year for an article on MCS in the Spanish magazine, Interviu, said that the amount of patients who were seeking medical help for this illness is growing rapidly. In his hospital, each year, they get between 50 and 60 new patients. That means one new patient a week.

LA: What symptoms could make one think that they have this illness?

EC: Perhaps the most common symptom is to notice unbearable smells which one did not notice before. One stops tolerating various chemical agents like cleaning products, perfumes, tobacco smoke, car emissions, etc. When you have MCS and you are exposed to these chemical agents, a series of symptoms are triggered automatically like choking, irritation of the respiratory tract, tachycardia, headaches, mental confusion, dizziness, nausea, diarrhea, extreme fatigue and/or pain. These symptoms don’t get better until you stop being in contact with the chemical agent that produced it.

Normally you also stop tolerating alcohol, dairy products or gluten. You also develop intolerance to various foods and medications.

Often there are other environmental intolerances: to heat, to cold, to noise, to sunlight and to electromagnetic fields (computers, high power lines, telephones, cellular phone atennas, microwaves, etc).

LA: What differences are there between MCS and, let’s say, Fibromyalgia?

EC: MCS, Chronic Fatigue Syndrome/Myalgic Encephelitis (CFS/ME) and Fibromyalgia (FMS) are illnesses of the same family. In fact, many of us who have MCS, we actually have the three illnesses and more and more people with CFS/ME and FMS, with the years, also develop MCS.

We have a lot of the same symptoms, but the biggest difference is that those with MCS do not tolerate even the smallest exposure to chemical substances, which is the reason why we have to maintain a strict environmental control and we cannot go outside without a mask with a carbon filter to filter out the enviromental toxics.

LA: What medical treatment does a person with MCS receive from the Spanish health care system? Do you think it is adequate? Do you think it is fair?

EC: In Spain, MCS is not recognized as an illness and so health workers and the general population are not aware of this serious pathology.

Instead, countries like Germany, and recently Austria and Japan, have recognized it and other countries are on their way to doing so and offer health services to those who have it and are establishing protocols for prevention.

In Spain there are hardly any doctors in the public health care system who can diagnose this illness and it is very hard to get a diagnosis and even harder to get treatment. I am convinced that there are a lot of people in our country who have MCS who are not diagnosed, many of who end up in the hands of psychiatrists because of the lack of knowledge of our doctors. Also there are no protocols or policies on “Free of fragrances” for our hospitals and public buildings, so for us going to the hospital means getting sicker.

In Spain, we people with MCS do not have health care services, we do not have the right to economic help to adapt to our disability and we do not have the right to a pension when we cannot work. I don’t just see it as unjust: I think the way we are treated is a violation of our constitutional rights.

LA: But, isn’t it a bit of a contradiction the fact that the European Parliament considers MCS an environmental illness and that in Spain, the central government and the regional governments look the other way?

EC: Of course it is! It is all with the excuse that the WHO has not yet recognized it as an illness. This does not mean that it does not exist: the decisions that are taken at a bureaucratic level do not make us patients disappear by magic.

They use this argument to discredit the illness when it is all really a conflict of interests. Also they will tell you that there are no specific biomarkers for MCS, but that is the same as other illnesses which are recognized.

LA: What percentage of the population is it thought to be affected by this illness right now?

EC: According to the 2007 study published by doctors from the Barcelona’s Hospital Clinic, J. Fernández-Solà (Internal Medicine) and S. Nogué Xarau (toxicologist), 5% of the population has MCS. They specify that: “More that 15% of the general population present mechanisms of excessive response when faced with a chemical or environmental stimulus. In 5%, these processes are clearly pathological and they are above the organism’s capacity to adapt and so it results in skin, respiratory, digestive and neuropsychological manifestations, frequently chronic and persistent”.

So if MCS affects 5% of the population, it cannot be considered a “rare disease”, which are the ones that affect less than 0.0005% of the population.

LA: Are you speaking about the Spanish population or are you thinking in European or world terms?

EC: I am talking worldwide. It is considered an illness of the industrialized world.

In countries where there are statistics about this illness, like in Canada, we see that the amount of people that have MCS is not small. According to the Environmental Health Association of Quebec, there are 4 million people with MCS in Canada.

LA: And do we know the causes? MCS, as you have said, is a disease related to environmental factors. What does that mean exactly?

EC: Studies say that the cause is the toxics in the environment we are exposed to. There are two ways of developing MCS: from one single exposure to toxics at a high dose or by several exposures to small amounts over the years.

There are toxic substances in the air we breathe, in the water we drink (in the plastic if we drink bottled water), in the clothes we wear (formaldehyde, dyes, traces of pesticides), in the cleaning products, in our beauty products, in the food we eat (pesticides, additives and artificial colours which have been banned in the USA for many years for being cancer causing) or, for example, in the silver dental fillings (which have mercury).

Over the years, our body accumulates all these chemical substances which circulate in our environment without any controls, substances which we must remember that it has not been so many years that they have been in use, until the toxic load is unbearable and we end up getting sick, which according to our genetic make-up, it could end up being MCS. But other people do not get off scott-free because they will end up developing cancer, asthma, allergies, autoimmune diseases or any other illness of environmental origin.

Even doctors complain that there is no funding for researching MCS, that no one wants to fund MCS studies, because studies normally are funded by pharmaceutical companies so they can develop a medication, that is, for their own benefit. But as MCS patients do not tolerate any medication, we are of no interest to them.

LA: But, what sense does it have to know all this and not take any measures? Why do we keep using these products if we know of their toxicity and of the high risk their use entails? It is not an ideal situation the one you describe. Why do we not put some order in this toxic chaos?

EC: That is a good question. It does not make any sense to not take any measures and to keep on using these products. If health authorities do nothing, the option is to stop using these toxic products and it will have to be us who take charge of things.

In the labels on the fabric softener, the beauty products, the perfumes or the air fresheners it does not say: “Warning, this product is toxic and it will keep accumulating in your body until it causes you Multiple Chemical Sensitivities”. No one warned me. That is why I try to share all that I have learned ever since I got sick 4 years ago so that people will know what we are not being told.

If, for example, it is so hard to regulate tobacco, all this will surely be harder because we are not talking about one product. The problem is more than that. Has everyone forgotten that in the 1960s medical reports were hidden or changed, reports that showed that tobacco caused cancer? What is happening is nothing new. Power is not in the hands of politicians. It is in the hands of the multinationals.

LA: Describe, briefly, the life of a person with MCS. What measures does the person have to take? What treatment does the person have to undergo?

EC: The treatment is basically one concept: Environmental Control.

Environmental Control is to basically avoid, as much as possible, any exposure to toxics or chemical substances in general and the basic points are:

  • Eat organic, non-processed foods (normally it is recommended to avoid dairy products and gluten).
  • Filter the water, the drinking water and also the water for cooking and showering.
  • Substitute all beauty and cleaning products with ecological ones, ones without aroma. Logically, one must stop using colognes, air fresheners, laundry softeners, etc.
  • Use ecological clothing that does not have any dyes nor toxics.
  • Get an air filter.
  • Buy furniture and mattresses that are made of ecological materials that have not been treated with chemicals and when you paint the house, it must be ecological paint.
  • Avoid or minimize exposure to electromagnetic fields.
  • Use a carbon-filter mask when you go outside or in situations in which there are a high concentration of toxics.
  • Try to live in an area which is the least contaminated as possible and in a house made of non-toxic materials.

As you can see, Environmental Control involves a high financial cost, for which we have no help and also, the last point, is almost impossible to carry out.

Besides Environmental Control, which is also beneficial for healthy people, there are personalized treatments. These involve nutritional supplements, saunas, oxygen therapy, etc. Each person with MCS is different and also some people have other added illnesses. Therefore, one has to have a lot of tests done to determine what is best in each situation. In Spain, none of this is covered by the public health care system.

Those of us with severe MCS can barely leave the house. Our lives are reduced to our house, which becomes our prison, in which most of us cannot even do any housework. In some cases, we spend most of the day in bed and rely of family members for almost everything. The contact with the outside world is reduced to talking on the phone, those who have energy to do so, the odd visit from people who are willing to change their washing and cleaning habits, and through Internet, for those of us who do not have severe cognitive or electromagnetic problems.

LA: What government help does a person with MCS receive? It does not seem possible for someone so sick to go to work. How can you organize your home if your family does not have the available time?

EC: We get no help when we have MCS. Even the masks, without which we cannot survive, we have to pay them ourselves. This is the economic drama that goes along with this illness.

When one has severe MCS, one cannot work, but if one has mild MCS it is not possible either because no employer is willing to adapt the work place so that a person with MCS can continue working. In some cases, some people get disability, but usually it involves going to court. We must remember that there are young people who get sick who have not worked long enough to have the right to a pension. What is their future? I always say that I am amazed that there is not more depression amongst people with MCS. Who would not be depressed in such a hard situation?

One can try to get disability, but the amount of money that one gets is very small, depending on the scale of severity recognized.

In my case, I am lucky to have my husband’s and my mother’s help, because I am so severely ill that I cannot do anything in the house, nor even cook for myself. Even if I had the money to pay someone to come and help me at home, that would not be possible. Just to be able to have my mother come over, she has had to change all her washing and cleaning habits as well as showering herself before coming.

LA: Why do we hear so little about Multiple Chemical Sensitivities? What is behind all this? What is behind this silence?

EC: Yes, there is something hidden behind this silence: the interests of the chemical and pharmaceutical industries not to have it known that their products cause terrible new illnesses like MCS. Recently it has been proven that MCS is not psychological and that studies that were done in the past which said that it was psychological were manipulated in order to protect the interests of the chemical and pharmaceutical industries.

Unfortunately, it is very easy for the government to ignore us, as most of us live under house arrest and we do not have the strength to organize ourselves. It is clearly an abuse of power. Only our families, friends and neighbours know we exist and how hard our everyday life is.

But, despite the seriousness of our situation, we are many, more every day who, from our homes, through Internet, fight for our rights, to try to make MCS visible and we share information to help each other out, as our government does not help us.

LA: You talk about studies that were altered that “showed” that MCS is a psychological illness in order to preserve the interests of large corporations. Were they blinded by the colour of money? Can you give us an example?

EC: On September 2008, the magazine Journal of Nutritional & Environmental Medicine, published a study by Goudsmit and Howes entitled “Is multiple chemical sensitivity a learned response? A critical evaluation of provocation studies” This study showed that MCS is not a psychological illness and that its origin is tied to chemical substances. I translated to Spanish the article that MCS America dedicated to this study:

“In the past, a small number of badly designed studies, suggested that MCS was a psychological illness related with pre-existing expectations and beliefs. This is a stance that the pharmaceutical and the chemical industries have made an effort to have everyone believe, because this way, their chemical products would stop being the  responsible ones and the use of profitable psychiatric medications would be promoted, in the absence of medications which could counteract the effects of environmental contamination. Given the fact that most chemical and pharmaceutical companies have the same owner, this position has been promoted energetically and very cunningly through publications controlled by the industry itself. Fortunately, these manipulated studies were examined by Goudsmit and Howes using additional scientifically accepted criteria. That way, the studies that talked about a psychological base for MCS were proved to be very misleading due to numerous deficiencies and methodological mistakes. It was determined that MCS is related to exposure to chemical substances rather than to anxiety, psychosomatic states and depression.”

LA: One of your articles is entitled “We are born naked” and it has had a great repercussion amongst people with MCS and other people interested in the topic. Why? What was this article about?

EC: I wrote the article for the on-line cultural magazine Delirio, which exposed, without holding back, the total neglect and abandonment that we, people with MCS, suffer, making a special point on the situation in Spain. “We are born naked” had also two photos of me naked wearing a mask which caught the attention of MCS associations in other countries, which resulted in it being translated into 9 different languages.

The reason for its success is that people ill with MCS all over the world felt totally  identified with the situation we live in Spain. Unfortunately, even in countries were MCS is recognized, people with this illness are abandoned and silenced because of the economic interests go before our health.

In the next number of Delirio, dedicated to the topic of silence, there will be another article on MCS. They have asked me to write it to explain the success of “We are born naked” and that way we continue to inform on MCS.

We are the “canaries in the mine”, we are the warning of the disaster which is coming. We are the evidence that the actual model of society has failed, although no one wants to admit it nor pay for it, nor do anything about it. For all this, they want to silence us.

LA: Disaster that is coming? What disaster? Why has the actual model of our society failed? Is this because of the illnesses it generates? Tell me about a more humane model.

EC: The cases of MCS are increasing rapidly and in younger and younger people. Each day there are more children with allergies, asthma, with celiac intolerance, etc. The cases of cancer are multiplying and are appearing in families with no cancer history. There are constantly new studies that show the relationship between chemical substances and electromagnetic radiations with certain cancers or an increase in allergies. If something is not done, the future that awaits us is not that of a healthy society.

I, like other people with MCS, are the proof that this society has failed. When I was little, I use to think that the government looked after us and that if something was sold, it was because it was safe. I could not have been more wrong. The air quality in cities like Barcelona or Madrid is scandalous. Our food is full of pesticides, with all kinds of additives and they are allowing the use of transgenic modified foods. They let us get sick and then they abandon us with no help, with no health services as it has happened to me. You study and get a degree, you have a good professional career and when you are supposed to begin to enjoy your life, it is all over. Is that a Welfare State?

Measures have to be taken to stop putting the economic interests before health. Chemical substances and electromagnetic radiations should be banned and regulated. Transgenic modified foods should be banned. Organic farming should be encouraged as well as alternative energies…There is an infinite number of measures to be taken, but the important thing is to change the direction and to start before it is too late.

LA: You have written a book, a magnificent book, entitled Missing. Why Missing? Where have you disappeared from?

EC: Thank you for praising my book. As a new writer, it is an honour.

LA: The honour, dear Eva, will be that of the readers, I can assure you.

EC: I thought of the title when I read the great introduction to my book that Clara Valverde has written (she is a writer, president of the Liga SFC- CFS League- and lives with Chronic Fatigue Syndrome). It was then that I realized that a lot of people might think that I disappeared from the face of the Earth. I went from having a job with a lot of responsibility in a bank, going to the gym every day, going to rock concerts, going out with friends and sharing holidays with my family, to being locked up in my house to be able to survive. Seen from the outside my immediate group, I am missing, kidnapped by MCS.

The outside world is toxic for all, but for those of us who have MCS, it is to the point that we cannot go out without a carbon-filter mask that protects us from harmful chemical substances and, in some cases, the severity is such that even with a mask, we cannot go out. I am sentenced to live within my four walls because they have not taken measures to ban chemical substances that, in me, set of a crisis and in other people makes them develop an environmental illness. Does no one realizes that it is not normal that every day we hear of a cancer death? Does no one care that this society is sicker every day and that this is not sustainable?

LA: Finally, how should society and the health services act regarding these new illnesses? Are they really new? Can you suggest some basic ideas?

EC: As I was saying before, MCS it not really new as the first cases were reported in the 1950s. We cannot use the idea that they are new as an excuse in 2009 to justify that nothing has been done.

At an international level, the first thing should be that the WHO recognize MCS once and for all as an illness. But until this happens, our country should recognize MCS, following the example of other European Union countries. Also they should train doctors and adapt the health services for MCS. All this would also mean that we should have access to disability pensions and other support to be able to adapt to our illness.

Right now, when people with MCS get sicker, because of our illness or because of another illness we might also have, we do not have anywhere to go because there aren’t any hospitals that are prepared for us and health workers do not know about our pathology. That’s how serious our situation is.

It is also necessary to put into place prevention policies such as “Free of fragrances” ones in hospitals and public buildings and to control and ban certain substances. All this would be beneficial for the health and well-being of all citizens, not only those of us who have MCS.

And, obviously, there should be put in place a public education campaign so that people can get to know our disability. When you go out on the street with a mask, you leave yourself open to all kinds of mocking and abuses and this is unacceptable. There are people who are ill who do not even get any support from their friends and family, all because MCS is not recognized.

We are not asking for a special treatment, but an adequate treatment for the problems that this illness creates.

LA: What you are saying and asking for is very reasonable. Thank you for your words. Would you like to add something else?

EC: Yes. I would like that making my situation public, as I do through my blog and now, even more, through my book, could serve as a warning to all those who are still healthy. Perhaps they think that because they do not have the genetic predisposition to MCS, they are safe, that they cannot get sick like I did. But this is not so. As I have told you, the chemical substances that cause MCS, also provoke many other illnesses. Also, we can and we should live in a different way, without so many chemical products and that will be good for our health and also for the environment. We must change before it is too late and the change starts with each one of us because as consumers we have a lot more power than we think. If there is no demand, then there is no offer.

And to end I would like to bring up a paragraph from my article “We are born naked”:

“Those of us who live with MCS would like this illness to be recognized, we would like to have the same rights as other chronic patients, we would like society to know of the risk it is in, we would like the government to protect its citizens and to help them prevent getting sick unnecessarily. We don’t want anyone else to feel naked because of having MCS”.

Interview by Salvador López Arnal with Eva Caballé, November 2009