Archive for category ‘Perfume, Fragrance‘

Do students with chemical sensitivity have a chance in traditional schools?

The broadest possible integration of disabled people is the goal of all countries which are signatories to the UN Disabilities Convention. The countries which have signed this convention and ratified it, may be viewed here:

Rights and Dignity of Persons with Disabilities

This internationally binding document has validity for those countries who have signed and ratified it. Direct efforts should have been pursued by the signatories so that all disabled children receive an education. No disability must be preferred over an other. MCS – Multiple Chemical Sensitivity is a physically caused disability which needs recognition in the educational realm.

In the U.S. and Canada, there is a steady growing number of schools and local univer- sities that are integrating policies for chemically injured students and adapting conditions to include this disability. The transition has been mainly on a volunteer basis initially, with perfume bans and an effort to use chemically free cleaning products.

Students with MCS

There are severe cases of children and young teens with chemical compromises which seem to have little hope of a successful future due to their disability. The chemical triggers are so overwhelming on their various physical systems that they are unable to attend a traditional school setting without well thought out appropriate accommodations.

A big problem for these students in traditional school settings is falling behind academically. Due to their reaction difficulties at school, they miss a lot of instructional time. Parents report their children missing hours, days, and sometimes months of school , and trying to catch up at home with all the required instructional materials from the teacher(s) is extremely difficult.

Then there is often trouble with the school or school authorities. Whether the modifications for these disabled students will be feasible to get the education requirements needed depends on the consideration of the school, the classmates, building maintenance, chemical substances used at the school site, in and outside the individual classroom.

Questions to be answered in individual countries:

  • How does my country integrate children and young people who have chemical sensitivity?
  • What are the guidelines for dealing with chemically sensitive students in a traditional school setting or what accommodations can the school offer?
  • Are schools in my country responsive to students with MCS?
  • Do authorities in my country have policies in place which enable chemically sensitive students to achieve a quality education?
  • Does my country cover free internet schooling education for students suffering with chemical sensitivities?
  • What policies would schools have to change in order to successfully integrate students with MCS?

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

In January 2006, at the initiative of the Ministry of the Environment, a Research Centre for Chemical Sensitivities was founded in Denmark. The Center was designed to offer treatments to those with MCS and research fragrance sensitivities in more detail. The initial hope that originally flowed through this center, funded by the Ministry, was to benefit MCS sufferers and to delve into medical science for those affected. Unfortunately this hope has been shattered by recent publications.

The EMM Blog will publish several articles reporting the consequences for MCS sufferers. Environmental health professionals and organizations must be well informed about the events in other countries and it appears that the Danish Research Centre for Chemical Sensitivities is striving to clearly influence the international science of MCS.

The second article of a series entitled, “The Danish MCS Research Centre in the International Field of Vision,” was written by a nurse who is suffering from MCS.

If you missend the first article of the series, read here >>

Mette Toft: MCS – Multiple Chemical Sensitivity: A Report from Denmark

What are the interests within the individual research groups regarding MCS?

Bodil Dam Bak Nielsen – In April 2010, an independent group of Italian scientists (De Luca et al.) published their research results, “Biological definition of multiple chemical sensitivity from redox state and cytokine profiling and not from polymorphisms of xenobiotic-metabolizing enzymes“.(1) The study results have shown that in MCS sufferers, the activity of erythrocyte catalase and GST were lower, whereas Gpx was higher than normal. Both reduced and oxidized glutathione were lower during nitric oxide (NO) / peroxynitrite (ONOO) raised in the MCS group. The fatty acid profile of MCS patients were shifted to the saturated part, and the IFN-gamma, IL-8, IL-10, MCP-1, PDGFbb and VEGF were elevated.

Danish MCS Science Center questions the work of colleagues

In July 2010, the Danish Research Centre for Chemical Sensitivities and Fragrance Sensitivity reported on their website, (which in the opinion of many Danish MCS sufferers is very questionable research, with the main emphasis on mental health):

“Since this is only a single study (De Luca et al.), it is necessary to review the results and pursue new studies before a conclusion can be drawn regarding the importance of immunological factors in fragrance and Chemical Sensitivities”.

“This is why the Danish Research Centre for Chemical Sensitivities plans to examine whether heightened cytokines or inflammatory factors can be detected in those with chemical hypersensitivity – REGARDLESS OF CONTACT ALLERGIES”.

Selective control?

The results of the Italians have not only showed increasing of the messenger interferon (IFN)-gamma, but also point to several metabolic parameters for accelerated lipid oxidation, as well as increased nitric oxide production and reduction of glutathione in combination with elevated inflammatory cytokines, which confirms a biological definition and diagnosis of MCS.

Contact allergy, a diagnosis of exclusion in MCS?

The former head of the Danish Research Centre for Chemical Sensitivities, Jesper Elberling , who is the senior researcher and expert, knows that the messenger interferon (IFN)-gamma plays a role in the development of contact dermatitis because of his work in the dermatology department at Gentofte Hospital. This is the cytokine messenger that the Italians have found in their research in MCS patients. The  Danish Research Centre for Chemical Sensitivities realizes from its own questionnaire that many MCS sufferers also suffer from contact allergies.

Because of this it is important to ask the following questions:

  • Is the Danish Research Centre for Chemical Sensitivities, therefore, consciously and deliberately selecting only THIS small part of the research result of the Italians to verify? Shouldn’t ALL research findings be verified before a conclusion can be drawn as to their validity?
  • Shouldn’t one of the aims of this planned research study be to look at those MCS sufferers with a contact allergy and not exclude MCS patients with contact allergy to see if the result changes?
  • Is the Danish Research Centre for Chemical Sensitivities able to demonstrate that this result (the De Luca A et al. research) can be attributed, according to a large part of the MCS sufferers who participated in the study, must have suffered from contact dermatitis, and that this research can therefore be attributed to this fact?

Will their study results attempt to discredit the Italian research?

Only then the Danish Research Centre for Chemical Sensitivities could thus bring the present research results into disrepute, which would neglect the complete research result of the Italians and cast their research in a bad light.

Why not complete control?

This raises the question of why the Science Center has not decided to check the other research results of the Italian scientists who need to be reviewed well before the Center may consider their findings valid.

Martin Pall’s theory (the fatal NO / ONOO cycle), states that among other things, MCS sufferers experience an increased nitric oxide production, which has indeed been demonstrated by the researchers from Italy. The Danish Research Centre for Chemical Sensitivities cannot refute this research result.

The Italian scientists have shown that, in accordance with Martin Pall’s theory, the vicious biochemical NO / ONOO cycle,three factors decreased compared to the healthy control group. It is odd that the Danish Research Centre for Chemical Sensitivities does not have evidence or the desire to disprove this.

It appears that the Italian doctors did not choose to include contact allergies in their research findings. Naturally, most biochemical substances in the body are influenced by many factors or diseases; therefore, the wish to correlate precisely this factor (interferon (IFN)-gamma) with something that is known to influence it as well (i.e. contact allergies) can be seen as an attempt to create uncertainty around the Italian research results. In this way the entire Italian study, and its results that are so important to MCS sufferers, will be questioned. Is this the intended aim of the Danish Research Centre for Chemical Sensitivities?

We certainly hope not, and hope that independent scientists will begin to verify the accuracy of all the other results, and not only select a single result, in the hopes of being able to refute the validity of the research.

Author: Bodil Dam Bak Nielsen for CSN – Chemical Sensitivity Network, August 2010

Translation: Thank you very much to Christi Howarth!

References:

  1. Chiara De Lucaa, Maria G. Scordob, Eleonora Cesareoa, Saveria Pastorea, Serena Mariania, Gianluca Maiania, Andrea Stancatoa, Beatrice Loretic, Giuseppe Valacchid, e, Carla Lubranoc, Desanka Raskovicf, Luigia De Padovac, Giuseppe Genovesic and Liudmila G. Korkinaa, Biological definition of multiple chemical sensitivity from redox state and cytokine profiling and not from polymorphisms of xenobiotic-metabolizing enzymes, doi:10.1016/j.taap. 2010.04.017, Toxicol Appl Pharmacol. 2010 Apr 27
  2. Danish Research Centre for Chemical Sensitivities, Italiensk studie sætter fokus på signalstoffer, 18.07,2010

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

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

Related articles:

MCS – Multiple Chemical Sensitivity: A Report from Denmark

Hi, my name is Mette Toft. I’m 53 years old, married and blessed with two grown-up children. I have a university degree (MA) in Japanese and Danish and was teaching these languages, at universities and language schools, for many years. Inspired by my diligent students, I even came up with a new, simple way of teaching Danish pronunciation and had teaching material for students and teachers published. I always thought I hated phonetics, but this project was great fun!

Increasingly, though, I had health problems that no doctor could explain: headaches, rashes, fatigue and malaise.

Perfume allergy, MCS and lupus

In 1999 a patch test showed that I was highly allergic to perfume. My dermatologist told me to take this very seriously. If not, it might progress to a point where I couldn’t be in the same room with people who were wearing perfume, she explained. From that day on, our home was completely fragrance free. At work, however, and everywhere else I went, I was still surrounded by perfume and scented products of all kinds. So, alas, the dermatologist’s prediction came true, with a vengeance.

In 2005 I became seriously ill with what turned out to be MCS and lupus (a really troublesome and potentially fatal autoimmune disease) – simultaneously. It soon became clear that I would have to stop working. Nevertheless, for four years, I was denied any kind of social benefits. This is a pretty common practice in Denmark, I’m sorry to say.

A happy happening in a sad setting

Here I would like to tell you about our MCS-happening in the heart of Copenhagen on 12 May, The International MCS Awareness Day, and, not least, about the sad setting of this cheerful event.

In Denmark, as in many other countries, MCS is not yet recognised as a true physical disease caused by chemicals. The Danish National Board of Health maintains that MCS is not a disease, but a “situation” where people “believe” or “feel” that various airborne chemicals are making them ill. Accordingly, MCS patients are sometimes referred to psychiatrists to be misdiagnosed with a psychiatric diagnosis, typically “somatoform disorder”, which means “all in the head”.

The Danish Research Center for Chemical Sensitivities on the lookout for ”psychological factors” in MCS patients

In 2006 The Danish Research Centre for Chemical Sensitivities was established on the initiative of the Danish Ministry of the Environment. It soon became evident that the purpose of this research center was to have the environment acquitted, so to speak, of the charge of causing MCS. Time and again patients heard the then Head of Research, MD, PhD Jesper Elberling announce that the environment should probably not be blaimed for the problems.

The Research Center has no experts of toxicology or environmental medicine among its staff. Instead, the new Head of Research, former nurse, MSc, PhD Sine Skovbjerg and her staff focus on counting and documenting various ”psychological factors” among patients. Her view is that MCS should be studied as a somatoform disorder and that MCS can be cured by so-called mindfulness-based cognitive therapy.

Which psychological factors do you have? – None. I have MCS.

Shocking news about electroconvulsive therapy (ECT) as a treatment for MCS

I think it is fair to say that the international MCS community was shocked when the aforementioned Jesper Elberling published an article in which he concluded that: “Electroconvulsive therapy should be considered an option in severe and socially disabling MCS…”. Elberling has elsewhere stated that: “If the observations concerning ECT are correct, then it means that we can be VERY (sic) optimistic about a future treatment for MCS”. Obviously, not many Danish MCS patients share this view.

An abstract of the article and international reactions to it is found at Canary Report:

Psychiatrists propose induced convulsions as treatment for Multiple Chemical Sensitivity

Counter action

In an attempt to cheer ourselves up a bit in the midst of this depressing madness, we decided to celebrate The International MCS Awareness Day on May 12 with a colourful and festive happening in the heart of Copenhagen.

Unfortunately, the rain was pouring down all day long and a few of our attractions – a couple of spectacular canary costumes among them – had to be left out of the programme and saved for a hopefully sunnier MCS Awareness Day next year. Our MCS-lottery and free samples of fragrance free skin cremes did appeal to quite a lot of people, though, and each and everyone of them took a copy of our information sheet and MCS-folder home to read.

A student who had decided to do a paper on MCS came early to ask questions. And one concerned politician (of the 60 or so who were invited) dropped by for a serious chat.

Author: Mette Toft, Denmark

© Photos: Torben Bøjstrup

Further Reports about the Situation of MCS Patients in different Countries:

Reckless Self-Interest Of The Fragrance Industry

People must be protected from exposure to fragrance ingredients that may cause cancer or fetal, hormonal or reproductive toxicity, the Cancer Prevention Coalition warned today. But federal agencies are not regulating these ingredients, leaving the public at risk due to the “recklessly irresponsible” behavior of the fragrance industry, says CPC Chairman Samuel S. Epstein, M.D.

Protection of the public would be implemented by passage of Senator Frank Lautenberg’s Safe Chemicals Act of 2010, Dr. Epstein advises. This bill requires manufacturers to provide information on “chemicals of concern” in consumer products.

The bill would provide the public with information on the dangers of these products, especially, says Dr. Epstein, “as the U.S. Food and Drug Administration (FDA) has recklessly failed to do so since passage of the 1938 Federal Food, Drug, and Cosmetic Act.”

Perfumes and fragrances are the single largest category of cosmetic and personal care products, especially products used on the hair, face, and eyes. These products represent nearly 50 percent of all prestige beauty dollars now spent in the United States. Fragrances are also extensively used in a wide range of everyday household cleaning products.

Exposure to toxic ingredients in cosmetics and personal care products is predominantly through the skin. In contrast, exposure to toxic ingredients in household cleaning products is predominantly through inhalation.

The FDA has direct authority under the terms of the 1938 Federal Food Drug and Cosmetic Act to regulate toxic ingredients in cosmetics and personal care products. However, seven decades later, it has still failed to do so. Similarly, the U.S. Environmental Protection Agency has also still failed to regulate these toxic ingredients in household cleaning products.

“In the disturbing absence of any federal regulations,” Dr. Epstein says, the policies and practices of the cosmetics and personal care products industries are determined by its International Fragrance Association (IFRA). This is an international trade organization of over 100 perfume and fragrance manufacturers, representing fifteen regions including the U.S., Europe, South America, Australia, and the Far East.”

The primary objective of IFRA is to protect the self-regulatory practices and policies of the industry by the development of a Code of Practices and safety guidelines, Dr. Epstein says. However, these include maintaining the “trade secret” status of perfume and fragrance ingredients, and pre-empting international legislative labeling and safety initiatives.

Of the more than 5,000 ingredients used in the fragrance industry, approximately 1,300 have so far been evaluated by the industry’s International Research Institute for Fragrance Materials. This institute is a “non-profit” organization, created by IFRA in 1966 to conduct research and testing of fragrance ingredients.

“However,” Dr. Epstein warns, “this testing is minimal and restricted to local effects on human skin, and short-term toxicity tests in rodents.”

Evaluation of ingredient safety is then made by a board of toxicologists, pharmacologists, and dermatologists, identified by the institute as “independent” without disclosure of their qualifications, let alone conflicts of interest.

Their findings are presented to IFRA’s Scientific Advisory Board, and then published in its trade journal, Food and Chemical Toxicology. The information reported in this journal is the basis on which IFRA formulates its own “safety guidelines.” However, Dr. Epstein points out, due to the “trade secret” status of fragrances, manufacturers are still not required by the FDA to disclose their ingredients on product labels or in any other way.

“These ingredients include a wide range of allergens. They also include synthetic musks, particularly tonalide and galaxolide, designed to mimic natural scents derived from musk deer and ox,” Dr. Epstein explains. “They are persistent and bioaccumulate in the body, have toxic hormonal effects, and have been identified in breast milk.”

In 1973, in efforts at damage control, IFRA created a Code of Practice listing prohibited ingredients, based on its own safety analyses. This listing has been periodically updated.

In May 1999, in response to repeated complaints of respiratory, neurological, and other toxic effects following the use of Calvin Klein’s Eternity perfume, the Environmental Health Network of California hired two testing laboratories to identify the ingredients in the perfume.

Analysis of these results by the Cancer Prevention Coalition, summarized in Dr. Epstein’s 2009 book Toxic Beauty, reveal the following:

  • 26 ingredients whose “Toxicological properties have not been investigated,” or “toxicology properties have not been thoroughly investigated.”
  • 25 ingredients that are “Irritants.”
  • 5 ingredients that are “Skin sensitizers,” or allergens.
  • 3 ingredients that show “Fetal, hormonal, and reproductive toxicity.”
  • 2 ingredients that “May cause cancer.”

In efforts at damage control, IFRA agreed that information on allergenic ingredients in perfumes like Eternity should be made available, but only on request from dermatologists, for diagnostic purposes. “This “Fragrance On-Call List” action denies the public its right to know,” Dr. Epstein warns.

More disturbingly, Dr. Matthias Vey, president of IFRA, failed to respond to repeated warnings from August to October 2003 from the Cancer Prevention Coalition. These urged “all fragrance products be labeled to the effect that, apart from the absence of known skin and respiratory allergens, they contain no known carcinogens, gene damaging, hormonal, or otherwise toxic ingredients.”

As reported in “What’s That Smell,” a June 2010 report by Women’s Voices of the Earth, faced with continuing criticism of unresponsiveness, IFRA initiated a “compliance program” in 2007. “However,” Dr. Epstein warns, “this is based on testing of a mere 50 fragranced products from the global market place to detect prohibited ingredients.”

A fragrance may be restricted by IFRA on a variety of grounds. These include: use in products at higher-than-recommended concentrations, sensitization, photosensitization, phototoxicity, allergenicity, neurotoxicity, carcinogenicity, undefined biological effects, and inadequate data.

“This restriction, though, works better in theory than in practice,” Dr. Epstein emphasizes. “There is no pre-approval process for ingredient safety other than that claimed by the Research Institute for Fragrance Materials.”

Literature: Cancer Prevention Coalition, Reckless Self-Interest Of The Fragrance Industry, CHICAGO, IL, June 28, 2010

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EPA conference calls for consideration of asthmatics

First Perfume and Fragrance- free Asthma Conference

The American Environmental Protection Agency is holding a large asthma conference from June 17-19, 2010, in Washington D.C.. For the first time ever, the EPA has a special conference feature which is to renounce fragrances and perfume. Thus, the EPA is sending a signal to indicate the fragrance issue and to provide participants with asthma, the possibility to participate at the 2010 National Asthma Forum. Fragrances are among the principle factors for asthma attacks.

Nearly 300 experts and leaders, whose work is to improve the living conditions of people with asthma, are taking part in this event. Primary decision makers of federal and state authorities, as well as those responsible for guidelines, managers of health authorities, scientists, physicians and leaders of self-help organizations are included in this group. Their goal is to design environments to assist in safe living for all asthmatics.

In order to allow all participants to take part in the conference, meaning a conference free of perfume, aftershave, hairspray, body lotion, fabric softener or scented deodorants, the federal agency sent out the following reminder online:

“Asthma-friendly environments are our business – Please help us to make this a fragrance-free event by using fragrance-free personal care products and avoid perfumes and other irritants.”

This is a very positive step by the EPA. They have removed the largest known barrier for asthmatics and chemically injured people this year for the 2010 National Asthma Forum. World leaders on every continent should incorporate this humanitarian example by the EPA , for those disabled with illnesses affecting the breathing and lung function throughout the world.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, 17 June 2010

Translation: Thank’s to Christi Howarth

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