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:

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

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

Related Articles:

• Secret Chemicals revealed in Celebrity Perfumes, Teen Body Sprays
• Household detergents, Shampoos may harmful substance in wastewater
• Phthalate Concentrations and Use of Personal Care Products among Pregnant Women
• Open Letter: Perfumed Stamps constrain People with Disabilities

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

Related Articles:

• Secret Chemicals revealed in Celebrity Perfumes, Teen Body Spray
• Open Letter: Perfumed Stamps constrain people with disability
• Professor urges us to take people with Chemical Sensibility into Account

President’s Cancer Panel report highlights threat from hormone-disrupting chemicals – many found in new fragrance study

San Francisco – A new analysis reveals that top-selling fragrance products – from Britney Spears Curious and Hannah Montana Secret Celebrity to Calvin Klein Eternity and Abercrombie & Fitch Fierce – contain a dozen or more secret chemicals not listed on labels, multiple chemicals that can trigger allergic reactions or disrupt hormones, and many substances that have not been assessed for safety by the cosmetics industry’s self-policing review panels.

The study of hidden toxic chemicals in perfumes comes on the heels of last week’s report by the President’s Cancer Panel, which sounded the alarm over the understudied and largely unregulated toxic chemicals used by millions of Americans in their daily lives. The President’s Cancer Panel report recommends that pregnant women and couples planning to become pregnant avoid exposure to hormone-disrupting chemicals due to cancer concerns. Several fragrances analyzed for this study contained multiple chemicals with the potential to disrupt hormones.

“This monumental study reveals the hidden hazards of fragrances,” said Anne C. Steinemann, Ph.D., Professor of Civil and Environmental Engineering, Professor of Public Affairs, University of Washington. “Secondhand scents are also a big concern. One person using a fragranced product can cause health problems for many others.”

For this study, the Campaign for Safe Cosmetics, a national coalition of health and environmental groups, commissioned tests of 17 fragranced products at an independent laboratory. Campaign partner Environmental Working Group assessed data from the tests and the product labels. The analysis reveals that the 17 products contained, on average:

Fourteen secret chemicals not listed on labels due to a loophole in federal law that allows companies to claim fragrances as trade secrets. American Eagle Seventy Seven contained 24 hidden chemicals, the highest number of any product in the study.

Ten sensitizing chemicals associated with allergic reactions such as asthma, wheezing, headaches and contact dermatitis. Giorgio Armani Acqua Di Gio contained 19 different sensitizing chemicals, more than any other product in the study.

Four hormone-disrupting chemicals linked to a range of health effects including sperm damage, thyroid disruption and cancer. Halle by Halle Berry, Quicksilver and Glow by JLO each contained seven different chemicals with the potential to disrupt the hormone system.

The majority of chemicals found in the testing have never been assessed for safety by any publically accountable agency, or by the cosmetics industry’s self-policing review panels. Of the 91 ingredients identified in this study, only 19 have been reviewed by the Cosmetic Ingredient Review (CIR), and 27 have been assessed by the International Fragrance Association (IFRA) and the Research Institute for Fragrance Materials (RIFM), which develop voluntary standards for chemicals used in fragrance.

“Something doesn’t smell right—clearly the system is broken,” said Lisa Archer, national coordinator of the Campaign for Safe Cosmetics at the Breast Cancer Fund. “We urgently need updated laws that require full disclosure of cosmetics ingredients so consumers can make informed choices about what they are being exposed to.”

“Fragrance chemicals are inhaled or absorbed through the skin, and many of them end up inside people’s bodies, including pregnant women and newborn babies,” said Jane Houlihan, senior vice president for research at Environmental Working Group.

A recent EWG study found synthetic musk chemicals Galaxolide and Tonalide in the umbilical cord blood of newborn infants. The musk chemicals were found in nearly every fragrance analyzed for this study. Twelve of the 17 products also contained diethyl phthalate (DEP), a chemical linked to sperm damage and behavioral problems that has been found in the bodies of nearly all Americans tested.

Members of Congress who are working to develop safe cosmetics legislation reacted to the report:

Rep. Jan Schakowsky, D-Ill.: “There’s no reason that people should be exposed to potentially harmful chemicals because they use perfume, cologne or body spray. But this report suggests that is exactly what’s happening. The chemicals detected in popular fragrances, which are often endorsed by celebrities, could have a range of adverse health effects and Americans are being exposed unknowingly. I think this is a clear sign of how woefully out of date our cosmetics laws are and how urgently the cosmetics safety legislation we’re developing is needed. The ingredients used in these products need to be tested for safety and the FDA must be empowered to fully protect the health of Americans by blocking chemicals deemed unsafe. Americans need to know that the fragrance products they buy don’t contain chemicals that could harm them.”

Rep. Ed Markey, D-Mass.: “A rose by any other name may smell as sweet, but in some cases sweet smelling fragrances may in fact be dangerous. I am happy to be joining with my colleagues to soon introduce legislation that will make disclosure of ingredients used in cosmetics and fragrances mandatory and ensure that toxic chemicals are kept out of colognes and perfumes. Consumers have a right to know just what is in the products they spray and rub on their body every day.”

Rep. Tammy Baldwin, D-Wis.: “It’s alarming that cosmetics products we use every day contain hidden toxic chemicals. That’s why I’m working with colleagues in Congress on legislation that will overhaul our outdated cosmetics oversight and regulation. We all deserve to know our products are as safe as possible.”

# # #

Download the report: www.safecosmetics.org/notsosexy

Autor: Campain for Safe Cosmetics, Release: May 12th, 2010.

Masses

Choke

Slowly

We are not allowed to stop dreaming. Dreams we have not chosen. Dreams that are sold to us as indispensible for our happiness. And we sleep carefree and dream. We dream and we buy to be able to sleep and to keep dreaming about more stuff. We sleep deeply warmed by the glow of the robotized masses, heads full of dreams that don’t allow rest.

Don’t even dare to stop having sweet empty dreams. Don’t even dare to stop breathing deeply and find yourself lost in the nightmare of other’s dreams, without being able to wake up; in a world that burns you and locks you into an illness that only allows you to dream that your nightmares disappear.

Tonight you will go to sleep satisfied, snuggled up to your soft-skinned, seductively perfumed life, where everything is inoffensive and perfect. Your dreams will, once more, banish me to the hidden side of the world, where light pierces and sound scorches the nerves, where dreams become a cruel poison that slowly kills me and drags me from nightmare to nightmare with no way out.

Your toxic dreams bury my existence under a stone slab made up of three words: Multiple Chemical Sensitivity. Your world of ideal dreams sentences me to live jailed.

Wake up from the heavy dream in which you are sinking us so that you and I can dream that we actually live, a real dream; so that no more will anyone see their dreams turned into the torture of a merciless illness.

Author: Eva Caballé for Delirio, April 2010

Photo: Aida/Delirio

• German Version

More articles from Eva Caballé for Deliro:

• Naked Truth about MCS
  
• Metamorphosis insinde Multiple Chemical Sensitivity