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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

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 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.

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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.

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Tags: MCS, Multiple Chemical Sensitivity, Research

The poisoning has begun

Posted on Jul 03, 2010 by Susie Collins in Blog, Environment, Guest Bloggers

Thursday evening we found a voice message left by the owner of the land next to ours saying they would be spraying ROUND UP and select herbicides sometime on Friday. And there went our plans for a safe and happy holiday weekend.

By guestblogger Jacki Palmer-Boyce.

Our neighbor spraying his fields on Friday next to our home and organic gardens. Our holiday weekend has been ruined!

Thursday evening we came inside the house @ 10pm to a voice message left by the owner of the land saying they would be spraying ROUND UP and Select herbicides sometime on Friday. This ruined our HOLIDAY weekend. The soybean field is right next door to our property to the WEST and NORTH side of our land. We had no idea they were going to spray so our plans were to camp in our own yard “campsite” to avoid crowds and chemicals from the Holiday weekend. We had the tent sent up and plans for a fire with a few friends.

With the girls on a better day.

I was very grateful for the “warning” that was a life saver. HOWEVER all our plans of enjoying our own homestead went up in “fumes.” I had to keep all the windows closed today and it is a perfect day outside 70′s and sunny with low humidity and low dew point, so I had to miss out on a GREAT weather day. I could not enjoy my own yard, my “organic” gardens, my spring/well water are all at risk every time they spray more and more poisons into the land and air, which effects the water supply.

With Multiple Chemical Sensitivity, I smell, taste and feel the chemicals even though my husband John does not. So I am locked inside the house while he is outside. We can not go to our parks or Findley due to too many people and all their toxic chemicals they bring with them on a Holiday camp weekend: lighter fluid, tiki lights,sunscreen, the list goes on and on of things you have to avoid around crowds. So needless to say: several hours of spraying ruined several days to weeks of my life.

The tent we'd set up for "camping" in our yard this weekend.

I wonder how this can be legal and yet someone caught with a joint goes to jail. It is all about the $$ and GREED… MONSANTO & DOW should be in prison for poisoning people for year after year. Read about how glyphosate is toxic and Roundup is worse. Read here about clethodim herbicide. I hate when people say it is “JUST” roundup like it is something “safe”… boy did marketing pull the wool over so many zoombies’ eyes… WAKE UP, PEOPLE, CHEMICALS KILL! And not just the bugs!

I am very lucky the owner “warns me”– he doesn’t have to do that in OHIO; some states it is a law. So please know how thankful I am for the warning, without that I’d have my windows all open and clothes on the line and playing in my yard.

The raised beds out front, south exposure, with peppers and tomatoes.

This spraying happens about 3 to 4 times a growing season with different types of herbicides and fugicides. Each time is like a knife going into my heart and soul. We’d love to move away from all this madness they call country living and farming, but at this point in time it is not in the stars. So we try so hard to keep our little eco friendly homestead as chemical free as possible (in our control) and pray for protection from the chemicals when they spray. It beats the helicopter they used to spray fungicides last year– now that really drifted!

Just makes me so sad that this is still legal. Think of the millions of gallons of pesticides/herbicides used all over the USA. Add that to the GULF oil well blowout and we are doomed. They could stop it but choose not to. It brings in too much $$$$ and GREED is the name of the game… NOT HEALTH.

I want to end my day with a positive: I am well for the shape I am in…. I want to end with the positive… I must always be grateful no matter what… each day is a blessing even if it doesn’t turn out like you hope.

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Tags: Environment, Food, Garden, MCS, Multiple Chemical Sensitivity, Organic, Pesticides, Pollution, Toxic

The long journey home

Posted on Jul 02, 2010 by Susie Collins in Blog, Guest Bloggers, MCS

Common Scents: Adventures with Autism and Chemical Sensitivity is a memoir I wrote about my experiences living in eight cities over two years, searching for safe housing.

By guestblogger Kate Goldfield.

Cover shot for my new book Common Scents: Adventures with Autism and Chemical Sensitivity.

In the sun.

“The long journey home,” –what does that mean to you? For two years, I had no real definition of or sense of home. I moved anywhere from every few weeks to every few months. I couldn’t stay in any one place long enough to plan a dinner out, make friends, or have any sense of roots or belonging.

Why did I move so much? Most readers of The Canary Report will be familiar with the horrors of what we call multiple chemical sensitivity, or MCS. I react to fragrances and chemicals of all kinds, and the residues and exposures in any apartment or roomshare I looked at were just too much for me.

At 24, after living with my parents in Standish for as long as I could, I couldn’t find any apartments or roomshares that worked for me in Maine. So I set off on a journey across the country to find something that would. I used Craigslist or other MCS websites to find other people with chemical sensitivities who had houses that would be compatible with my needs. In this way, I ended up living in eight cities over two years: Burlington, Vermont; Liberty, New York; Missoua, Montana; Newport, Bend and Eugene in Oregon; Ballston Spa, New York; and finally back to Maine where I currently am, in the greater Portland area.

There was another complication. I have Asperger’s Syndrome, a high functioning form of autism. This sometimes makes it difficult for me to communicate effectively with others, understand social rules and norms, and tolerate a lot of sensory stimuli (such as noise, certain kinds of weather, smells, fabric textures and so on). The two years I spent traveling from place to place were a challenge, but they taught me a lot about the world and my place in it. I learned the power of my own strength and the value of human connection.

Book cover.

Common Scents: Adventures with Autism and Chemical Sensitivity is a memoir I wrote about these experiences. I have suffered from MCS for about four years; two years ago, I decided to do something about it. Many of us can relate to having a nomadic lifestyle; many of us will also be able to relate to the day in, day out struggles of everyday life that I experienced on this journey while trying to lead a chemically safe life in so many different cities.

I wanted this to be a book we could all relate to, a book someone with MCS could read and see themselves in. Maybe our life circumstances aren’t completely the same, and maybe my autism makes me see the world a little differently than you, but in the end our experiences are all remarkably similar. We are united by one common goal: to keep ourselves safe from the chemicals that bring havoc to our lives and health by any means possible.

I tried to make this a lighthearted tale; I didn’t want it to be a story of gloom and doom. Wherever I could, I used humor and wit to convey my story, believing that at least in this case, the reader would be more engaged when they were laughing than crying. My perseverance finally paid off after two years, and I found a good living situation back in my beloved home state of Maine. We all are suffering from so many problems; safe housing is the number one goal for people with chemical sensitivities. I only hope that one day, this goal will be realized for every single person that needs it.

Meanwhile, if you would like to read more about my story, please go to my website at http://kategoldfield.webs.com . Paperback books are available for purchase at the link at the end, and PDF versions are available too. May we all find what we are looking for, and more importantly, may we all support each other on our journeys until we are able to do so.

Kate Goldfield

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Tags: Books, MCS, Multiple Chemical Sensitivity

Danish report explores Multiple Chemical Sensitivity policy in 11 European countries

Posted on Jun 30, 2010 by Susie Collins in Blog, Guest Bloggers, Law, MCS, Policy

Here is the English translation of a Danish report on Multiple Chemical Sensitivity policy in 11 European countries.

By guestblogger Harry Clark, President, MCS Society of Australia, Inc.

Cover of Danish report translated by Harry Clark, et al.

The Danish Health Ministry recently released a report about measures being taken by 11 European countries to address Multiple Chemical Sensitivity (MCS). Please find attached an English translation of the document, entitled Measures Taken by European Countries for Multiple Chemical Sensitivity, which I have translated with the kind assistance of several people. I extend my thanks to Sandra, Monika, Mervi, Martine and Charlotte for their invaluable assistance with translations, corrections, proofing and suggestions. I also wish to thank Martine who brought the Danish report to my attention.

Please check Eva Caballe’s blog, No Fun, and Mariajo Moya’s blog, Mi Estrella de Mar, for subsequent Spanish translations.

SUMMARY OF REPORT

In many countries around the world, there are fascinating and important developments occurring in the realm of MCS. Yet, much of this knowledge is unintentionally restrained behind veils of the different languages used. These veils that partition MCS knowledge and restrict its flow need to be actively pushed aside so that we can all freely share in the full and developing body of MCS materials. Translations, like the one in English presented here of the Danish Health Ministry’s report, are of great importance because they enable MCS knowledge to spread further afield, which in turn empowers all of us as we engage in the challenge of improving the lives of people who have MCS.

The Danish paper represents an important snapshot of current MCS thinking and activity in Denmark and 11 other European governments. It reports on a pioneering conversation between governments. It is not full of news or attitudes that are the absolute best for those of us with MCS, but there are plenty of threads of opportunity and hope. I suggest this report reflects conversations on MCS that are occurring within some European countries and also in some offices of the European Parliament. Clearly those who wish to dismiss MCS have lost some influence, otherwise this Danish report would not exist.

To briefly summarize the Danish report:

Only two countries, Germany and Austria, recognize MCS as a physical disease on their ICD disease registers. In Germany this means a sick leave note and perhaps sick pay may be available, but confusingly they say that MCS is not explicitly recognized as a disease in Germany and that it is not recognised as an occupational disease there. To add to the confusion, in Austria a person disabled by MCS will likely be diagnosed as having a mental disorder in order for them to have the opportunity to gain a pension.

Three countries– Finland, Sweden and Germany– recommend perfume and strong detergents be avoided in the public sphere; including for example hospitals, kindergartens, schools and after school care.

Six countries– Finland, Luxemburg, Nederland, Sweden, Germany and Austria– follow the European Union Directive on labelling for cosmetics. Germany particularly mentioned that sensitising agents need to be listed on a products label. Britain labels according to other EU environmental legislation. Denmark says it labels all cosmetic products with declarations of their contents such that people with allergies can avoid products they might react to, but does not say what law or directive it follows.

France, while not identifying MCS as a special strand of study, is setting up a number of systems and studies to obtain information on Electromagnetic Sensitivities and to collect records of people who suffer symptoms that appear to be allergy related but are not proven to be allergies. They are looking at the biochemical status of 20,000 children in a longitudinal study. Allergies and their prevention is a specific focus of the Environment and Health Plan for 2009-2010.

The Västra Götalands region of Sweden put in place a region-wide Fragrance-Free Hospital policy in 2008 that covers 17 hospitals. Also, the Swedish EPA says that sustainable development requires the reduction of the inconvenience brought about by chemicals to people who are already hypersensitive. However they have suggested no measures to achieve this.

The Federal Agency for the Environment in Germany generally recommends that those with MCS should not be socially excluded.

Luxembourg’s environment ministry has a campaign to promote the use of organic laundry detergent and cleaning products and warns against adding fragrances that don’t aid the cleaning.

Harry Clark

President
MCS Society of Australia, Inc.
Email: MCS-Society-of-Australia@bigpond.net.au

Founder
MCS News Australia

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Tags: MCS, Multiple Chemical Sensitivity, Policy, Support, Work

It’s MCS Awareness Month! Are you still spreading the word?

Posted on May 27, 2010 by Susie Collins in Blog, Guest Bloggers, MCS

Spread the word! May is MCS Awareness Month! Are you still spreading the word and wearing yellow?

By guestblogger Lourdes Salvador, MCS America.

MCS America created an event planning kit that provides ideas and preformatted materials to request governor proclamations, generate awareness at school and work, target health providers, create library displays, and reach the public through radio, television, media, and other year-round events.

Each May, Multiple Chemical Sensitivity Awareness and Education Month is observed in the United States.

Multiple chemical sensitivity (MCS) affects over 48 million men, women, and children of all races. Even though MCS is of widespread epidemic prevalence, public awareness of the toxicity of common environmental insults and ways to manage and accommodate MCS remain limited.

Activities are organized around the month of May and continue throughout the year. As I’ve previously blogged here at The Canary Report, MCS America and I play a special role during this time and are committed to promoting awareness of toxic chemicals which may cause MCS and trigger reactions in those already injured by toxic chemicals. This year, we have done several things to participate in this important event.

One of the greatest ways to generate awareness is to wear clothing and accessories which mention and promote MCS. There is an effort to make yellow the official color of MCS Awareness Month and we need yellow clothes. MCS America has provided several designs to Cafe Press on a volunteer basis to further the awareness of MCS and to support the mission of MCS America. All the designs are available in yellow shirts and bags. Cafe Press prints these designs and sells the items from their website. Our Cafe Press mark-up is 0%, so we take no income from this project and buyers pay Café Press’s whole cost only.

For people who want to get involved but may not know how, we have created an event planning kit for MCS Awareness month that provides ideas and preformatted materials to request governor proclamations, generate awareness at school and work, target health providers, create library displays, and reach the public through radio, television, media, and other events. Many of these materials can be used year-round for awareness activities.

Our MCS Fact Sheet is a great one page summary to mail to health providers and stores; post at school, work, and other bulletin boards; and distribute to neighbors and others we encounter throughout the day. It is also available in Spanish. Please pass these out freely!

We also have a Fragrance Fact Sheet in both English and Spanish and an Electromagnetic Radiation Fact Sheet in both English and Spanish (Electromagnetic Radiation event planning kit here).

Some of us may feel we are too ill or time constrained to do anything worthwhile to promote awareness. The truth is that every single one of us can do something to spread awareness. It takes very little effort. There are simple things that can be done which take a mere five minutes each day, any day of the year.

One idea is to make a phone call to a hospital or store and ask if they have a fragrance free policy. This simple call brings awareness to the issue and if these establishments hear from more than one person, it eventually begins to sink in that they need to do something. Make it all about them, their health, and the safety of their customers and they begin to listen. In advertising they say it takes hearing something seven times before it sinks in, so every person’s call counts!

Alternately, if talking on the phone takes too much energy, print one of the above fact sheets and put it in an envelope addressed to the establishment of your choice. Things like this can be done without even leaving home, so please get involved with us!

We’ve worked hard to make as much information about MCS readily available in a central location on our website. Please use, share, and take advantage of the key news, newsletter, news feeds, proclamations, brochures, pre-designed letters, public service announcements, scientific studies, and resources and referrals. For direct links to this information, visit MCS America or this post on The Canary Report.

Thank you for any and all efforts toward increased awareness! As citizens, we CAN take control of toxic chemicals and eradicate multiple chemical sensitivity. All we have to do is take the first step!

Lourdes Salvador is the founder of MCS America, a science writer, and a social advocate for the greater awareness of environmental contamination and multiple chemical sensitivity (MCS).

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Tags: MCS, Multiple Chemical Sensitivity

This is progress!

Posted on May 12, 2010 by Susie Collins in Blog, Guest Bloggers, Healthy Living, MCS

I am about to talk about the most hotly debated and taboo topic in the MCS crowd– and that is about healing and possibly being cured. Since I am always on a steady upswing and will never give up, I thought I would just jot down the things I felt were helpful to me– no matter how controversial they may be.

By guestblogger Leslie Richard.

I am trying to learn to drive a car again after five years of being house bound!

People who have never experienced a chemical injury or some kind of health breakdown that causes a person to get Multiple Chemical Sensitivities may find this post a little weird… So be forewarned, let your judgments and confusion take a nap while ya keep on reading.

For those of you who have MCS, ya might have to let your judgments go, too, cause I am about to talk about the most hotly debated and taboo topic in the MCS crowd– and that is about healing & possibly being cured. Yeah, I said the “C” word, and now I am gonna tell you what I really think…

Some of us who developed MCS know exactly what happened, you might have been exposed to chemical in your workplace and then watched your health take a spiral into a housebound hell, you may have been renovating your home and didn’t recover, you may have been a Gulf War veteran who was lied to until recently about pills you were administered, or a 911 victim… or maybe an average person like me who was exposed to various things over time and happen to have an auto immune disease that caused enough damage to make the normal body functions take a dive six feet under.

However you got to the stage of MCS, no matter how hard you had to fight to be understood and never truly were by everyone… there is also this point of acceptance and letting go– letting the label of being “sensitive” be as big a deal as having brown hair.

Over the years, my symptoms of MCS kinda took up and down dives, with being only generally sick when going into K-mart (who isn’t sick in that place?), or when exposed directly to fresh paint, or loud amounts of perfume. These things bordered on normal, and didn’t stop me from at least hanging out at thrift stores. But nearly five years ago I got pregnant, and very sick– when I lost the baby my mild MCS turned into raging impossible to deal with every smell makes me wanna pass out and kill people so I must hide in the woods MCS. It was so intolerable that I could no longer drive without having seizures, I could not stand for my X-boyfriend to come home from the store and get near me with his smelly clothes, I could not hang out with or visit any other humans, or go anywhere in public. After nearly a year of this kind of hell-ish reclusive life, I ventured out…

I didn’t go sticking my head inside of paint cans or huff glue, but I decided if the world was going to kill me, then Fuck It! Let it kill me while I am living my life and doing what I want–

This is the healthier me AT A PARTY recently that included a lot of people, bonfire, some people smoking.

I started off slow and made small goals. Each time I reached a small goal (like buy a lottery ticket at a gas station two blocks away), I would set the bar higher and further ’til I was working on a more functional level. Four years later… look at the picture, that is me AT A PARTY that included a lot of people, bonfire, some people smoking, etc…

Two things I noticed over these years:

1. MCS is not in your head, people react to nasty shit in our environment as a natural part of our body’s function.

2. I (my body) was so used to reacting, there was some auto-anxiety involved… not “in my head” but anxiety that was learned and out of control. Anxiety bad enough to be confused – like was it a symptom or anxiety causes me discomfort?

The reason I bring this up is ’cause there are a few things I have done over the years that I believe have helped me improve. I am not cured, but since I am always on a steady upswing and will never give up, I thought I would just jot down the things I felt were helpful to me– no matter how controversial they may be (and knowing everyone’s body will need their own personal combo of things to heal!)

1. I got on the macrobiotic diet. I did not eat bad before that, in fact I have eaten all organic & whole foods long before health problems, but this diet has some really helpful ways to keep your foods appropriate for your ailments, the seasons, your body temperature, and healing in general. Over time I branched out and added back in some whole foods not strictly on this diet, but ones that help improve my energy and give me a greater variety of nutrients.

2. I got outta my head. This one will undoubtedly make some people with MCS upset ’cause it’s not a head disease, but with any health problems sometimes the best thing we can do is get the heck outta our own way and STOP for da’ love of gawd thinking about sickness, what causes sickness, how we got sick, being mad we got sick, blaming the world we got sick… etc. (you know the thoughts I am talking about!). I had to start thinking about life and my dreams, and not about “sickness” stopping my life.

3. Risks. I am not recommending anyone with MCS do anything to put themselves in harms way, but for me I had to take some risks to find out what my real limits were. With all the other helpful things I was doing for my health (clean house, clean diet, homeopathic detox, being nice to myself) there would come a time when new limits needed to be tested if I was to ever be able to branch out and do anything beyond my own backyard. Each time I took a successful risk (no matter how many were unsuccessful) I was able to do that much more and that did wonders for my mental health, too.

4. Homeopathic/Medicinal stuff. I tried about a billion things, but the only stuff I used that worked for helping detox my body in a gentle way were homeopathic pills for kids (Newton brand) and eating shiitake mushrooms (takes out heavy metal and junk real gentle, easy and tastes good, too!). I don’t like taking pills of any kind, and I did best when I stopped taking all the pills recommended to me and just took the one homeopathic or nothing at all.

5. I got a therapist! Hell yeah I did, because being sick is not easy to deal with and it turned out I learned amazing skills and coping methods that reduced tons of stress in my life and I only had to go for a short period of time before I learned to support myself emotionally and forgive and live again. What I learned in therapy about how to deal with being sick, rolled over into every relationship for the better.

6. Exercise!! No matter what, even if it’s hard and makes ya fatigued. I did this even when bed ridden and at my worst, getting the body moving and the blood circulating is your ticket to wellness.

7. Nice Home Environment. It never needed to be the Taj Mahal for MCSers, just had to not be freshly painted or super disgusting– I moved around more times than I can count on two hands and generally my house plants cleaned the air good enough each time. The really important part for me was not living right in a city (too much pollution), to have fresh air outside, to open my windows, to walk in the woods, to grow my own food, and have animals around me.

8. Brain re-training. I KNOW, this is the one people in the MCS community have been either seething with hate over, praising, arguing, or banning… but I tried it. Let me just tell ya’ll, I didn’t even watch all the CD’s for the Gupta Program but only up until the specific exercise to re-train your brain and I started doing the exercise immediately everyday. Did I do it like 20 times a day like he suggests? NO way maybe like once a day… nor did I do any of his meditations and all those suggestions on how to breathe ’cause I already had enough self help like that in my bag of tricks. But when I had a majorly bad thought about being sick, or bad symptoms, I did the exercise and then moved on. Brain re-training helped me, I can’t put my finger on it but once I started thinking in a positive direction and got my brain outta auto-sick mind, my bravery and ability to do things doubled up ten fold times 100!

This method has helped me tons with my newest challenge, and that is I am trying to learn to drive a car again after five years of being house bound! (See pic at top!)

I remember when I could not breathe in a small enclosed space with any other human unless they were totally decontaminated, chem free … but this picture below is me and my dad recently in my bathroom hanging a mirror together and the only reason my face looks like it does is cause he was calling the mirror a “f-en bastard” and scaring me with his perfectionism.

My Dad and me hanging a mirror together.

I am not in perfect health, I still have trouble breathing in certain places, I still feel ill to smell the fragrance detergents, I still know I am not reliable or well enough to go out and get a regular job… BUT I am much more functional. Functional enough to begin enjoying my life again and I wanted to put this out into the world– for those with MCS or any disease do not give up, ever! The body always is working towards healing itself, the body always wants to get better and so do you… do not give up on the miracle of healing– even if it’s slow and takes many years. Just know none of ya’ll are alone, I am over here at my little cabin in the woods believing everyday that we all can be healthy– no matter what anyone says!

Xoxoxo

~~~

This post was originally published at The Oko Box, where Leslie blogs an eco-friendly interactive commentary on organic clothing, DIY, environment, pollution, health, organic food, organic farming and wildlife adventures.

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Tags: Environmental Health, Health, Healthy Living, Home, Support

MCS Awareness Month in Florida: Displays and Proclamations

Posted on May 06, 2010 by Susie Collins in Blog, Guest Bloggers, MCS

Each year, Christiane Tourtet champions observance of MCS/EMS Awareness Month in Florida.

By guestblogger Lourdes Salvador, MCS America.

Thanks in part to Christiane Tourtet, this is the 11th year in a row in which mayors of Broward County, Florida, have supported people with MCS through an annual proclamation for MCS Awareness Month. For the past two years, the mayor also has issued an annual proclamation for EMS Awareness Month. In 2009, the governor of Florida signed the 10th annual proclamation for MCS Awareness Month.

Each year, Christiane Tourtet makes a display for MCS Awareness Month at the local library in her home state of Florida.

Each year on May 1st, Christiane Tourtet erects a display at the Dr. B.L. Perry, Jr. Branch Library in Tallahassee, Florida, in honor of Multiple Chemical Sensitivity (MCS) and Electromagnetic Sensitivity (EMS) Awareness Month.

Christiane, who graduated from Jacksonville University, is the founder and president of International MCS/EMS Awareness. She enjoys writing, photography, and numerous arts.

During MCS Awareness Month, Christine places a sign at the entrance to the library to inform everyone who visits the library during the month of May that it is MCS/EMS Awareness Month in Florida. The display itself is usually located on the 2nd floor and is chock full of information, flyers, and resources to explore.

This is the 11th year in a row in which mayors of Broward County, Florida have supported people with MCS through an annual proclamation for MCS Awareness Month. For the past two years, the mayor also has issued an annual proclamation for EMS Awareness Month.

In 2009, the governor of Florida signed the 10th annual proclamation for MCS Awareness Month.

There are many other proclamations requested by various organizations in the United States and Canada. MCS America has a list of all known proclamations in the US and Canada here and provides tips for how to request a proclamation in an annual event planning kit for both MCS and EMS.

Sensitivity to various chemicals affects over 45 million people in the U.S., and 3 million are currently diagnosed with MCS. With a plan that includes avoidance and control of environmental triggers, many people with MCS can recover and lead normal, healthy, and active lives.

EMS affects at least 9.8 million people in America. People who are sensitive to electromagnetic radiation have significantly higher natural rates of membrane leakage as measured by their skin conductance. This leaking of ions short-circuits natural electrical potentials and triggers nerve impulses to the brain.

These environmental health conditions are the result of global chemical and electromagnetic radiation pollution. Annual expenditures for health care and lost productivity due to environmental illnesses are estimated at $71.8 billion dollars per year.

More information on MCS and EMS may be found at MCS America and International MCS/EMS Awareness.

Thank you, Christiane, for such a wonderful job educating everyone who comes through the library during May!

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Tags: MCS, Multiple Chemical Sensitivity, Support

ANTI-TOXIC MANIFESTO: We know they are lying to us

Posted on May 04, 2010 by Susie Collins in Blog, Eva Caballé, Guest Bloggers, MCS, Social Justice

Although they want to make us invisible, lock us up in an illness and throw away the key, poison us and shut our mouths, kill us and then plant fake flowers on our tombs, they will not be able to lock us up, shut us up, nor make us disappear.

By guestbloggers Clara Valverde and Eva Caballé, Spain.

WE KNOW THEY ARE LYING TO US

(ANTI-TOXIC MANIFESTO)

International Day of Fibromyalgia, ME/CFS and MCS

May 12, 2010

They are lying to us. We know they are lying.

For the politicians, we are the black sheep in their controlled herd.

For the doctors who lie to us, we are the misbehaved guinea-pigs.

For the industry that lies to us, we are the non-profitable broken machines.

For the pharmaceutical companies, we are the pebble in their shoe.

The disease mongers lie to us.

Those who talk of progress with one hand on their wallet, lie to us.

But we do not believe their toxic lies.

We are out of patience and we are not good patients. We do not justify ourselves nor do we explain ourselves.

If you suffer with Fibromyalgia, survive with ME/Chronic Fatigue Syndrome, if you are agonizing with Multiple Chemical Sensitivity, you should know that you are at war. Their lies do not scare us, they are the ammunition in this war that has merely started.