The Canary Report

Video: MCS Can Be Lonely

Posted on Sep 01, 2010 by Susie Collins in Blog, MCS, Media/Videos, Susie Collins

A bit of whimsy exploring the very sad fact that so many people with Multiple Chemical Sensitivity live an isolated life away from family and friends.

Exposures to perfumes, colognes and other chemical fragrances can cause people living with Multiple Chemical Sensitivities debilitating migraines, pain, vertigo, memory loss, permanent brain damage and worsening of condition with each reaction. Synthetic fragrances often create a barrier between those with MCS and their loved ones, causing them to feel isolated alone.

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Tags: MCS, Multiple Chemical Sensitivity, Video

A toxic emissions spill at a BP refinery in Texas makes area residents ill; a $10 billion class-action lawsuit is filed

Posted on Aug 30, 2010 by Susie Collins in Blog, Environment, Susie Collins

The New York Times reports while the world was focused on the oil spill in the Gulf of Mexico, a BP refinery in Texas released huge amounts of toxic chemicals into the air that went unnoticed by residents until many saw their children come down with respiratory problems.

While we were busy paying attention to the health affects of the BP oil well blow out in the Gulf, a community in Texas was dealing with the aftermath of a BP refinery spewing out huge amounts of toxic chemicals into the air during an accident.

The New York Times reports With Neighbors Unaware, Toxic Spill at a BP Plant.

For 40 days in April-May, 538,000 pounds of toxic chemicals poured out of the refinery following an equipment failure. Environmentalists say the release of toxic gases ranked as one of the largest in the state’s history. Most households in one area close to the spill had at least one family member fall ill during the month of the accident, including many children. Residents are so angry, they’ve filed a $10 billion class-action lawsuit against BP.

[The] final report said the release of chemicals had gone on for 959 hours, until May 16. Among other pollutants, the plant had released 17,000 pounds of benzene; 37,000 pounds of nitrogen oxides, which can cause respiratory problems; and 186,000 pounds of carbon monoxide. Another 262,000 pounds of various volatile organic compounds also escaped.

“The state’s investigation shows that BP’s failure to properly maintain its equipment caused the malfunction and could have been prevented,” the attorney general’s office said in a statement.

Of interest to Canary Report readers is that current research shows both carbon monoxide and volatile organic compounds or VOCs can initiate Multiple Chemical Sensitivity in susceptible individuals. (The seven main classes of chemicals that can initiate cases of Multiple Chemical Sensitivity include three classes of pesticides: organophosphorus and carbamate pesticides, the organochlorine pesticides and the pyrethroid pesticides. Other types of chemicals reported to initiate cases of MCS include organic compounds, mercury, hydrogen sulfide and carbon monoxide. See the peer-reviewed MCS research of biochemist Martin Pall for further information.)

How many new cases of Multiple Chemical Sensitivity have been initiated through the negligence of BP in these recent accidents in the Gulf and in Texas is anyone’s guess at this point.

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Tags: Air, Canary's Cry, Chemicals, Children's Health, Environment, MCS, Multiple Chemical Sensitivity, Pollution, Research, Toxic

Scent marketers are manipulating our least-understood sense: smell

Posted on Aug 28, 2010 by Susie Collins in Blog, Guest Bloggers, MCS, Media/Videos

The fragrance industry is subjecting people, often without their knowledge, to chemical fragrances that affect emotions and behaviors.

By guestblogger Marti Wolfe.

Scent marketing delivery machine.

Utne Reader‘s current issue (September-October) reports on a distressing trend about which people with MCS and their advocates should be aware. In “The Sweet Smell of Sales,” Utne reports of articles appearing in Business Week, Good’s and Neuromarketing about “ambient scenting,” the new but growing practice of attempting to “elicit unconscious behavior or emotion” by “pumping a carefully chosen smell into a [commercial] space.”

MCSers have enough challenge with the smells of personal care products without having to deal with deliberately “piped in” synthetic organic compounds in public spaces.

Good’s journalist Siobahn O’Connor acknowledges the potential threat on the magazine blog: “The fragrance industry is secretive and trades largely in toxic chemicals that are known allergens and likely hormone disruptors,” she writes on the magazine’s blog (June 21, 2010). And “subjecting people (often without their knowledge) to fragrances that affect their emotions and behaviors strikes me as a slippery slope.”

I agree. If this is an invasive practice for the general public, it is even more so for the chemically sensitive, allergic, or respiratory-challenged cohorts of the population. Regulators and legislators should hear our dismay.

Cheers,
Marti

Marti Wolfe, PhD, is an environmental toxicologist whose research interests include the effects of methymercury on animals exposed via the aquatic food chain, and also the interaction of methylmercury and selenium when animals are exposed to these contaminants together. She’s worked on developing a non-lethal biomarker using molecular biology techniques to help identify birds that have been exposed to petroleum in their habitat. This biomarker also evaluates birds that have been treated following oil spills.

Link.

Photo credit.

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Tags: Fragrance, Indoor Pollution, MCS, Multiple Chemical Sensitivity, Products

Yellow Bird

Posted on Aug 27, 2010 by Susie Collins in Blog, Media/Videos, Susie Collins

“Yellow bird in the mine, I gave you my word you’d be fine.”

A sad but hopeful music video that speaks volumes to us canaries. It’s a very lucky canary who has someone in their life to pick them up out of the mine, wash them off, and fill their heart with love. xoxo

Music video animation by Kristine Thune, to the song “Yellow Bird” by Bess Rogers from her album, Travel Back EP.

Thanks, Julia!

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Tags: Art, Video

TEDTalk: Marine toxicologist Susan Shaw on the oil spill’s toxic trade-off

Posted on Aug 26, 2010 by Susie Collins in Blog, Environment, Media/Videos, Susie Collins

Marine toxicologist Susan Shaw does a TEDTalk about the consequences of using oil dispersants during the BP oil well blow out.

Of special interest to Canary Report readers is Shaw’s point about the overarching problem of lax chemical regulation in the US.

Click here to learn more about TedTalks, where the world’s leading thinkers and doers give the talk of their lives in 18 minutes.

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Tags: Chemicals, Pollution, Toxic, Video

Open tabs: August 25th

Posted on Aug 25, 2010 by Susie Collins in Blog, Featured News, MCS, Susie Collins

Here are some websites and pages about Multiple Chemical Sensitivity and related topics I’ve been reviewing this week.

Surgery at Christiana Care Center for Advanced Joint Replacement, Delaware. Would this room be safe for someone with Multiple Chemical Sensitivity?

At the Artists with MCS website, now inactive but full of good MCS info, I took another look at the hospital protocol guidelines for MCS patients.

Here is Dr. Grace Ziem’s Environmental Control Plan for Chemically Sensitive Patients. Excellent. Here’s Dr. Ziem’s website, I recommend you familiarize yourself with everything she has to say about chemical sensitivity. She’s worked closely with Martin Pall, PhD, on MCS research and therapy protocol.

I re-read a seminal document defining Multiple Chemical Sensitivity: Multiple Chemical Sensitivity: A 1999 Consensus. Eleven years later it still holds up but I think it could use some revising given the leaps in MCS research over the last decade; for example, the physiological mechanisms of MCS are better understood now in the areas of how it impacts multiple organ systems and so forth. Certainly the document’s call for clinical research is still valid, specifically in the area of diagnostic testing.

Leader-Post reports that education is key to dealing with MCS.

I read on the US Centers for Disease Control website about the effectiveness of washing your hands in soap and water to control the spread of germs and disease.  The CDC recommends that products other than plain soap and water, like sanitation wipes, should only be used when there is no soap and water available– this would not be the case in most workplaces, for example. Further, when there is no soap and water, a plain alcohol gel is recommended, not the heavily fragranced “antibacterial” products you see advertised all over as the panacea to spreading illness.

Canadians for A Safe Learning Environment offers a good document about Air Filters: Choosing Portable Equipment… Plus.

The Children’s National Health Center announces the 8th Annual Conference on Children’s Health & the Environment to be held Friday, September 24, 2010 at Hamilton Crowne Plaza, Washington DC.

Photo credit.

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Tags: MCS, Multiple Chemical Sensitivity, Open tabs

MCS activists in Denmark report their alarm about the Danish Research Centre for Chemical Sensitivities

Posted on Aug 24, 2010 by Susie Collins in Blog, Guest Bloggers, MCS, Research

Alert! The Danish Research Centre for Chemical Sensitivities is striving to clearly influence the international science of Multiple Chemical Sensitivity. Among its activities, the Centre is on the lookout for “psychological factors” in MCS patients.

By guestblogger Silvia K. Müller, Chemical Sensitivity Network, Germany.

Artist's rendering of Dänemark flagge.

Dear Friends,

Silvia Müller

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 Multiple Chemical Sensitivity 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 from the Centre.

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 following series is written by Danish MCS Activists.

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

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

The Danish Research Center for Chemical Sensitivities is 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 Jesper Elberling, MD, PhD, announce that the environment should probably not be blamed for the problems.

The Research Center has no experts of toxicology or environmental medicine among its staff. Instead, the new Head of Research Sine Skovbjerg, MSc, PhD, a former nurse, 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.

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

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.”

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):

“As the Italian findings are the first of their kind, it is necessary to verify the results in other studies before drawing a conclusion on immunological factors in MCS.

“The Danish Research Centre for Chemical Sensitivities therefore plans to study levels of transmitter substances in patients with MCS, independent of contact allergy” (emphasis added).

Part III: Paradox – Danish MCS sufferers are denied help because of the lack of scientific documentation – which nobody wants to obtain!

Until 2008, it was a common practice in Denmark for local authorities to grant severe MCS sufferers free aid under the service law, section 122, by giving them half mask respirators with activated charcoal filters. In 2008, a severe female MCS sufferer had her application rejected by the local authorities for this respirator. This case ended at the Danish appeals board.

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

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

Best regards from Germany,

Silvia K. Müller

CSN – Chemical Sensitivity Network

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Tags: MCS, Multiple Chemical Sensitivity, Research

The Quick Environmental Exposure and Sensitivity Inventory is an excellent diagnostic tool for chemical sensitivity

Posted on Aug 20, 2010 by Susie Collins in Blog, MCS, Susie Collins

The QEESI can help you with self-diagnosis or in working with your physician on a diagnosis of Multiple Chemical Sensitivity.

The Symptom Star graphic found in the Quick Environmental Exposure and Sensitivity Inventory or QEESI, created by Dr. Claudia Miller.

Dr. Claudia Miller

If you are new to chemical sensitivity and wondering if you have Multiple Chemical Sensitivity, be sure to familiarize yourself with Dr. Claudia Miller’s Quick Environmental Exposure and Sensitivity Inventory (QEESI), which is “the most widely used screening instrument for multiple chemical intolerance.”

Note that Miller often calls Multiple Chemical Sensitivity “Toxic Induced Loss of Tolerance” or TILT.

“Researchers and clinicians use the QEESI to document symptoms and intolerances in exposed indivudals [sic] and groups in whom TILT is suspected. Individuals find the QEESI helpful for self-assessment and screening,” Miller states on her website.

This document can help you with self-diagnosis or in working with your physician on a diagnosis of MCS.

Claudia Miller is a foremost physician, researcher and author on MCS, also known as TILT. She is co-author, along with Nicholas Ashford, of the book Chemical Exposures: Low Levels and High Stakes (1991, second edition 1998). You may have seen her name in the press recently, commenting on the emerging illnesses in the Gulf following the BP oil well blow out.

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Tags: MCS, Multiple Chemical Sensitivity

EPA to take action on chemicals used in dyes, flame retardants, and industrial detergents

Posted on Aug 19, 2010 by Susie Collins in Blog, Government Regulation, Law, Susie Collins

The U.S. Environmental Protection Agency released action plans to address the potential health risks of benzidine dyes, hexabromocyclododecane and nonylphenol/nonylphenol ethoxylates. The efforts are to limit exposure and reduce harm to people.

8/18/10 WASHINGTON – As part of Administrator Lisa P. Jackson’s commitment to strengthen and reform chemical management, the U.S. Environmental Protection Agency (EPA) released action plans today to address the potential health risks of benzidine dyes, hexabromocyclododecane (HBCD) and nonylphenol (NP)/nonylphenol ethoxylates (NPEs). The chemicals are widely used in both consumer and industrial applications, including dyes, flame retardants, and industrial laundry detergents. The plans identify a range of actions the agency is considering under the Toxic Substances Control Act (TSCA).

“The action plans announced today are examples of EPA’s renewed dedication to improve chemical safety to protect the health of the American people and the environment.” said Steve Owens, assistant administrator for EPA’s Office of Chemical Safety and Pollution Prevention. “These action plans lay out concrete steps EPA intends to take to address the risks associated with chemicals commonly used in this country.”

Benzidine dyes are used in the production of consumer textiles, paints, printing inks, paper, and pharmaceuticals and may pose health problems, including cancer. HBCD is used as a flame retardant in expanded polystyrene foam in the building and construction industry, as well as in some consumer products. HBCD has been shown to be persistent and bioaccumulative in the environment and may pose potential reproductive, developmental, and neurological effects in people. NP/NPEs are used in many industrial applications and consumer products such as detergents, cleaners, agricultural and indoor pesticides, as well as food packaging. These chemicals have been detected in people.

The range of actions on these chemicals include adding HBCD and NP/NPE to EPA’s new Chemicals of Concern list, issuing significant new use rules for all three chemicals, and, for HBCD and benzidine dyes, imposing new reporting requirements on EPA’s Toxic Release Inventory and potentially banning or limiting the manufacture or use of the chemicals.

In addition to EPA’s efforts, the Textile Rental Services Association, which represents 98 percent of the industrial laundry facilities in the U.S., has committed to voluntarily phase out the use of NPEs in industrial liquid detergents by Dec. 31, 2013 and industrial powder detergents by the end of 2014.

“While EPA intends to address the potential risks associated with these chemicals,” Owens stated, “we are pleased that the industrial laundry industry has decided to not wait for regulatory action to be completed by the agency and is voluntarily taking steps now to phase out the use of NPEs.”

EPA first announced that it planned to develop the Chemicals of Concern list last December, which indicates that the chemicals may present an unreasonable risk of injury to health and the environment. This previously unused TSCA authority signals the agency’s commitment to fully use the tools currently available, while supporting legislative reform of TSCA.

Additional information: http://www.epa.gov/oppt/existingchemicals.

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Tags: Chemicals, EPA, Law, Policy, Toxic

The Chemical Sensitivity Foundation

Posted on Aug 18, 2010 by Susie Collins in Blog, Guest Bloggers, MCS

The primary goal of the Chemical Sensitivity Foundation, a 501(c)3 nonprofit corporation, is to raise public awareness about multiple chemical sensitivity.

By guestblogger Alison Johnson.

Alison Johnson, chair of the Chemical Sensitivity Foundation.

The Chemical Sensitivity Foundation, which I chair, is a national 501(c)3 nonprofit foundation that in the last nine years has represented Multiple Chemical Sensitivity interests in what I think has been a fairly effective way, given the difficulty of raising money in this field. That difficulty relates to two problems. First, people with MCS are for the most part extremely short of money and therefore are not in a position to donate much to our cause. Second, mainstream foundations and wealthy people are not likely to donate large sums until MCS is more widely accepted. These potential donors will hesitate to donate to the cause when they learn that the medical community in general is quite skeptical about MCS.

When I decided to found the Chemical Sensitivity Foundation in 2001, I asked people to be on the board whom I knew very well. Most I had known for many years. I had met almost all of them in person, been in their homes in several cases, and had talked with them by phone frequently, so I had a good idea about who was well-informed, effective, reasonable, and reliable. I chose people who had been dealing with MCS as patients or the spouse of a patient for many years, usually a couple of decades. All but one had a proven track record of major national contributions to the MCS community; their names and reputation were widely known among the chemically sensitive. This group has worked together so well that no one has left the board since we founded the CSF nine years ago.

One important aspect of the Chemical Sensitivity Foundation is that the other board members have the power to vote me out of office at the annual meeting. We also list the name of each board member on our website, together with where they live. I know of no other MCS foundation that can vote its leader out of office; most other MCS foundations do not list their board members.

During the last year, the CSF has been responsible for getting copies of my book Amputated Lives: Coping with Chemical Sensitivity into the hands of every member of Congress, every governor, and every member of the state legislatures of California, Virginia, Pennsylvania, New Mexico, Indiana, Nebraska, and Washington. (Targeted donations from residents of those particular states paid for the latter books.) We also sent copies to the top 30 department heads at the Environmental Protection Agency (EPA) and the top dozen at the National Institute of Environmental Health Sciences (NIEHS) and the Agency for Toxic Substances and Disease Registry (ATSDR). If you are not familiar with my book, you may want to read excerpts on my website, www.alisonjohnsonmcs.com. The Foreword by Dr. Christine Oliver, a professor at Harvard Medical School, is particularly useful in giving the book some credibility with people outside the MCS community.

Over the years, copies of my other two books and my documentaries, Gulf War Syndrome: Aftermath of a Toxic Battlefield and The Toxic Clouds of 9/11: A Looming Health Disaster, have also been given to every member of Congress. My 9/11 film contains interviews with three members of Congress and with experts who have major standing nationally outside of the MCS community. My Gulf War Syndrome film was accompanied by a letter of endorsement from Ross Perot, and Congressman Jerry Nadler (Ground Zero district) provided this endorsement for my 9/11 film: “I wish every politician and policymaker could see this moving and powerful film.”

One very important aspect of the CSF website is the extensive bibliography of research on chemical sensitivity that has been published in peer-reviewed journals. The website also contains the link “Fragrance Issues” that leads to the groundbreaking Centers for Disease Control (CDC) policy that includes fragrance-free standards in all CDC facilities throughout the country.

In April, I was asked to chair a series of roundtable discussions titled “Multiple Chemical Sensitivity” at the CDC national Healthy Housing conference in New Orleans. In the past month, I have given 23 radio interviews about the potential for MCS to develop among the BP oil spill cleanup workers. These interviews were with fairly important radio stations with substantial numbers of listeners, including stations in Boston, Austin, Houston, Baltimore, Milwaukee, Philadelphia, and Miami. I attend many of the Washington or Boston meetings of the Research Advisory Committee on Gulf War Veteran’s Illnesses. This Veteran’s Administration appointed committee is largely responsible for influencing millions of dollars of research into questions that are quite closely related to MCS. During the last decade, I have traveled to London, Wiesbaden, Ottawa, Montreal, and Halifax to show my documentaries to MCS groups. My DVDs are now circulating in many European countries.

The CSF is focusing at this point on raising awareness of MCS because that is a realistic goal, given our present very limited funds. It’s clear that most of the other MCS projects we would like to work on depend upon raising substantial money for the cause. That will become much easier to achieve if we can convince the general public that the condition is real and physiologically based. You can all help in our fundraising efforts by encouraging others to visit our CSF website and to support our foundation financially. We would be happy to include anyone on our mailing list who sends me their address.

In closing, let me include the résumés for the CSF board members.

Pam Gibson, Ph.D.

Pam Gibson, Ph.D., is Professor of Psychology at James Madison University. She received her Ph.D. in clinical psychology from the University of Rhode Island in 1991 and has since studied the life impacts of having environmental sensitivities. Dr. Gibson is the author of the book Multiple Chemical Sensitivity: A Survival Guide, 2nd ed., as well as numerous journal and conference papers. For further information on Dr. Gibson’s book, see www.earthrivebooks.com and for her research, see www.mcsresearch.net.

Lynn Lawson

Lynn Lawson is a Phi Beta Kappa graduate in chemistry from Beloit College and received her master’s degree in English from Northwestern University. She taught English composition and literature at the university level for several years before becoming a medical and technical writer. She has written one of the leading books about chemical sensitivity, Staying Well in a Toxic World: Understanding Environmental Illness, Multiple Chemical Sensitivities, Chemical Injuries, and Sick Building Syndrome. From 1991 to 2001, she edited the Canary News, the newsletter of the Chicago area chemical sensitivity group, which enjoyed a nationwide MCS readership.

Ann McCampbell, M.D.

Ann McCampbell, M.D., is a physician who had to stop practicing medicine after she developed chemical sensitivity. She was a cofounder of the Healthy Housing Coalition of New Mexico in 1994, and she is the chair of the MCS Task Force of New Mexico, which she helped found in 1995. In 1996, Dr. McCampbell organized and moderated a meeting of the Governor’s Committee on the Concerns of the Handicapped held in Santa Fe. At this day-long meeting, dozens of chemically sensitive people testified about the impact of MCS upon their lives. Dr. McCampbell has written a booklet titled Multiple Chemical Sensitivity that is widely used by MCS support groups across the country. She also drafted the MCS brochure printed by the MCS Task Force of New Mexico in collaboration with the New Mexico Department of Health, the New Mexico Environment Department, and the New Mexico State Department of Education. Dr. McCampbell’s latest contribution to the cause of the chemically sensitive is an article titled “Multiple Chemical Sensitivities Under Siege,” which was the lead article in the Townsend Letter for Doctors and Patients in January 2001. In this article, she describes how pesticide companies are often subsidiaries or parent companies of pharmaceutical firms, a linkage that is particularly disturbing because of the enormous influence that pharmaceutical companies have through their advertising in medical journals and their funding of academic research.

Karen McDonell

Karen McDonell, who was a paralegal before a sick building exposure made her chemically sensitive, has been a leading MCS advocate in the Seattle area, where she has assembled a database of over 800 area residents with chemical sensitivity. Her efforts led to the establishment by the Washington Legislature of a task force on MCS. McDonell organized and raised funds for the first Washington State Conference on MCS, which was held in Seattle in 1993 with over 350 in attendance. She also organized a 1996 MCS conference that was cosponsored by the University of Washington, School of Continuing Education, as well as a conference on children’s environmental health, and served as the facilitator at these conferences. McDonell is also a long-time board member of the Washington Toxics Coalition.

Gerald Ross, M.D.

Gerald Ross, M.D., is board certified in both Family Medicine and Environmental Medicine and treated thousands of patients with MCS and many ill Gulf War veterans while on the staff of the Environmental Health Center in Dallas. Prior to that period, he served for four years in Halifax, Nova Scotia, as the medical director of the world’s first government-sponsored clinic established for the evaluation and treatment of environmentally triggered illnesses, including multiple chemical sensitivity. Dr. Ross is a past president of the American Academy of Environmental Medicine and is also a Fellow of the Royal Society of Medicine in England. A frequent contributor to peer-reviewed journals, in 1998 he presented a paper demonstrating the link between MCS and neurotoxicity at the first seminar on chemical sensitivity conducted by the American Chemical Society, the world’s largest scientific organization. Dr. Ross was the opening speaker at an Ottawa symposium on MCS sponsored by the Canadian Department of National Defense in 2001.

Anne Steinemann, Ph.D.

Anne Steinemann, Ph.D., is Professor of Civil and Environmental Engineering and Professor of Public Affairs at the University of Washington. She received her Ph.D. in Civil and Environmental Engineering from Stanford University in 1993. Dr. Steinemann received the National Science Foundation CAREER Award, the highest honor for junior faculty in science and engineering. She also received the highest teaching awards for both her department and the university while a faculty member at Georgia Tech. She recently published two textbooks: Microeconomics for Public Decisions (South-Western, 2005) and Exposure Analysis (CRC Press, 2006). In addition, she has published 30 peer-reviewed journal articles. Together with a colleague, she has conducted national and regional prevalence studies of MCS and published the results in the American Journal of Public Health, Archives of Environmental Health, and Environmental Health Perspectives. Further information about Dr. Steinemann can be found on her website.

Robert Weggel

Robert Weggel received a B.S. degree in physics from MIT and studied applied mathematics on the graduate level at Harvard. From 1966 to 1996, he was an analytical engineer and applied mathematician at the Francis Bitter National Magnet Lab at MIT, where he became the assistant head of the Magnet Technology Division in 1992. From 1996 to 2002, he was a Senior Research Engineer at Brookhaven National Laboratory, where he continued to design magnets. He has lectured at dozens of international magnet conferences and has written a hundred peer-reviewed journal articles. He brings to the board of the Chemical Sensitivity Foundation the perspective of a spouse of an MCS patient, and for several years he helped his wife Diane edit the newsletter of the Massachusetts Association for the Chemically Injured. He is also a former treasurer of the New England Chapter of the Sierra Club.

~~~

Alison Johnson is chair of the Chemical Sensitivity Foundation. She received the American Academy of Environmental Medicine’s Carleton Lee award in 2004 “In recognition of exemplary efforts in furthering the principles of Environmental Medicine.” She is a summa cum laude graduate of Carleton College and studied mathematics at the Sorbonne on a National Science Foundation Fellowship. She received a master’s degree in mathematics from the University of Wisconsin, where she studied on a Woodrow Wilson Fellowship. She has produced and directed documentaries titled Multiple Chemical Sensitivity: How Chemical Exposures May Be Affecting Your Health, Gulf War Syndrome: Aftermath of a Toxic Battlefield, and The Toxic Clouds of 9/11: A Looming Health Disaster. She has also edited a book titled Casualties of Progress: Personal Histories from the Chemically Sensitive and has written a book titled Gulf War Syndrome: Legacy of a Perfect War. In 2008, she published her latest book, Amputated Lives: Coping with Chemical Sensitivity. For information on these books and DVDs, see www.alisonjohnsonmcs.com.

©2010 Alison Johnson

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Tags: Books, MCS, Multiple Chemical Sensitivity, Video

Life with Multiple Chemical Sensitivity in Denmark

Posted on Aug 13, 2010 by Susie Collins in Blog, Guest Bloggers, MCS

In Denmark, as in many other countries, Multiple Chemical Sensitivity is not yet recognised as a true physical disease caused by toxic 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.

By Guestblogger Mette Toft, Denmark.

International MCS Awareness Day event, Copenhagen, Denmark.

Mette Toft

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, Multiple Chemical Sensitivity 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.

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

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.”

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, Jesper Elberling, MD, PhD, announce that the environment should probably not be blamed 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 Sine Skovbjerg, MSc, PhD, 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 The Canary Report: Psychiatrists propose induced convulsions as treatment for Multiple Chemical Sensitivity.

International MCS Awareness Day event, Copenhagen, Denmark. A lot of people took our MCS information sheets home to read.

Counter action: A happy happening in a sad setting

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.

One concerned politician dropped by for a serious chat.

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.

Our MCS lottery and free samples of fragrance free skin cremes did appeal to quite a lot of people.

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.

©2010 Mette Toft, Denmark

Photos ©2010Torben Bøjstrup

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Tags: MCS, Multiple Chemical Sensitivity, Research