Tag Archives: Multiple Chemical Sensitivity
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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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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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.
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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.
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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.
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).
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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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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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.
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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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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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This is why justice is rare in court cases involving Multiple Chemical Sensitivity
Posted on Aug 13, 2010 by Susie Collins in Blog, Law, MCS, Susie Collins
In the 2008 case of O’Brien v Citizens Insurance Company of America, the court managed to silence Ms. Delora O’Brien’s argument about her Multiple Chemical Sensitivity before she even started, by prohibiting her from providing expert testimony at trial in support of her claims.
Justice is all too rare in court cases involving Multiple Chemical Sensitivity.
In Oct. 2008, the Supreme Court in Suffolk County, NY., rendered a decision in a case where a woman sued her homeowner’s insurance company because of toxic remediation treatments to her home following a clothes dryer fire. The plaintiff claimed that the treatments, which included degreasers, furniture polish and window cleaners followed by an ozone treatment*, initiated her Multiple Chemical Sensitivity.
In O’Brien v Citizens Insurance Company of America, the court managed to silence Ms. Delora O’Brien’s argument before she even started, by prohibiting her from providing expert testimony at trial in support of her claims of Multiple Chemical Sensitivity. After listening to the Defendant’s argument discrediting MCS as an illness initiated by toxic chemical exposure, the court said, “There is nothing in the record that identifies a diagnostic test for MCS (IEI), nor are there any studies submitted which identify a mechanism or cause for MCS.” This conclusion was reached after the defendant, who refers to MCS as Idiopathic Environmental Intolerance or IEI, argued that there was no proof that MCS is a recognized illness due to the absence of “proof in the form of controlled studies, clinical data, medical literature, or peer review indicating the expert’s conclusions are generally accepted in the relevant scientific community.”
(By the way, always red flag any statement you see with Idiopathic Environmental Intolerance or IEI given as the name of MCS because it is designed to discredit MCS as a physiological illness.)
The court took a look at the Defendant’s argument and decided, “There is no evidence submitted to establish a causal relationship between any of the chemicals that are known to have been utilized during the remediation process at the O’Brien home and MCS (IEI). The Court concludes therefore that there is insufficient evidence to show general causation.” The final decision: Any opinions/conclusions on Multiple Chemical Sensitivity as an illness initiated by toxic chemicals must be omitted from the case.
Ms. O’Brien’s credibility was further compromised by the fact that the first doctor she visited after becoming ill with “headaches, fatigue and nausea,” diagnosed her as depressed and prescribed xanax and zoloft. Can you see where this is going?
Those of us with MCS know differently than the argument presented by the Defendant and the decision reached by the court. We know that current research, peer reviewed and published, clearly shows a causal relationship between exposure to a minimum of seven classes of toxic chemicals and the initiation of Multiple Chemical Sensitivity.
MCS researcher Martin Pall is at the forefront of this current research. His peer reviewed research is now published as chapter 92, “Multiple Chemical Sensitivity: Toxicological Questions and Mechanisms,” in the international reference manual General and Applied Toxicology, 3rd Edition (2009, John Wiley and Sons). “While the majority of this paper comes from my earlier publications on MCS,” says Pall, “it also contains several very important sections that are largely novel.” Here are three of his main points germane to our discussion about this court case:
1. There are seven classes of chemicals implicated in MCS and all seven of these can indirectly produce a common response in the body, increased NMDA activity. Furthermore, animal studies have shown that members of all seven of these classes of chemicals can have their toxic responses lowered by using an NMDA antagonist. This clearly demonstrates not only that they produce such increased NMDA activity but those increases play an important role in producing the toxic responses to these chemicals. Given that we previously had six types of evidence implicating excessive NMDA activity in MCS, we now have compelling evidence that this common response plays a key role in MCS.
2. The role of these chemicals acting as toxicants in MCS has been confirmed by four genetic studies, showing that genes that determine the rate of metabolism of these chemicals, influence susceptibility to MCS (only three were available when the review was written). These studies implicate six genes as determining such susceptibility, all of which have roles in the metabolism of chemicals otherwise implicated in initiating cases of MCS. It follows that the roles of chemicals in initiating cases of MCS is undeniable.
3. There have been a series of published studies reporting objectively measurable responses to low level chemical exposure among MCS cases that are distinct from any responses in normals. At least three of these should be practical specific biomarker tests that can be applied in clinical settings. All of these studies are consistent with the NO/ONOO- cycle mechanism as it is thought to play out in MCS and all provide, therefore, evidence supporting this mechanism. We have been in great need for such specific biomarker tests for MCS and these and other approaches to developing such tests must be further studied and may provide recognized specific biomarker tests in the near future, in my judgment.
I have heard argued on other MCS forums that the problem is the name of our illness, Multiple Chemical Sensitivity. Use that name in the courts, people argue, and you are immediately discredited. I disagree. I think no matter the name, we would still run up against this problem in the courts. Although I think a Plaintiff may have more success if he or she has other more easily measurable co-morbid illnesses along with the MCS; a physician and attorney may be able to build stronger medical evidence through those measurable illnesses than the MCS. But what about the people who only suffer the currently difficult to measure symptoms like “brain fog”? I say keep the name as it is found in most of the scientific literature, Multiple Chemical Sensitivity, and back up the arguments with the peer reviewed research. When asthma was once though of as a psychological illness, did you hear people clamoring to change the name? No, you saw the research and the body of literature grow to the point that the illness could no longer be seen as psychosomatic.
Read the court’s decision and weep for Ms. O’Brien. But know that one day– I hope soon– Multiple Chemical Sensitivity will be added to the long list of illnesses that were once thought to be “idiopathic” such as asthma, autism, Parkinson’s disease, ulcers, multiple sclerosis, lupus, interstitial cystitis, migraine and ulcerative colitis, all of which have been claimed at one time to be generated by a psychological mechanism. How long it will take for the courts to catch up with the current body of literature clearly showing a causal relationship between toxic chemical exposure and Multiple Chemical Sensitivity is anyone’s guess. But I think we may see more of this debate in the news as the recent BP oil well blow out in the Gulf and the subsequent health issues play out in the courts.
*Read more more about the dangers of ozone treatments here.
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Hawaii governor declares July as Toxic Injury Awareness and Education Month
Posted on Jul 27, 2010 by Susie Collins in Blog, MCS, Susie Collins
Hawaii proclaims July as Toxic Injury and Education Month; Multiple Chemical Sensitivity activists plan sign-waving event at state capitol for July 28.
Hawaii state flag.
MCS America reports Hawaii Proclaimed July 2010 Toxic Injury Awareness and Education Month. The proclamation was signed by Governor Linda Lingle and Lieutenant Governor James R. “Duke” Aiona, Jr, on July 22.
Thanks to the hard work of Sue Quimby and help of several others, Hawaii proclaimed July Toxic Injury Awareness and Education Month!
Multiple Chemical Sensitivity (MCS) is mentioned in the first line as being synonymous with Toxic Injury. This is the first time in 4 years anyone has been able to have a proclamation signed in Hawaii! Thank you Governor Lingle and Lieutenant Governor Aiona for addressing toxic injuries, such as MCS, in Hawaii!
A Hawaii Citizens Conference on toxics and MCS is planned for July 28th on the island of Oahu. There will be sign waving at the capitol building, plus speakers at Ala Moana park. Please join the festivities!
Students, Parents, Teachers – Please join us!Let’s SIGN WAVE at the Hawaii State Capitol, Beretania Sidewalk
EVENT: Hawaii Citizens Conference
SUBJECT: Toxic Awareness And Education. Let’s Keep Hawaii Clean For All Generations!
DATE: Wednesday, July 28th, 10 am to 11 am
ACTIVITY: Picnic At Ala Moana Beach Park, Magic Island Starting At 11:30 Am, “Bring Your Own Bento/Plate Lunch.” Guest Speakers Are Scheduled – Q & A, Informational Flyers, And Community Service Certificates Will Be Handed Out.
SUPPORTED BY: Sierra Club, American Heart Association, American Lung Association, MCS Hawaii.
Contact: Sue at (808) 927-1019 for more information.
Thank you for your support!
Click here for full text of proclamation.
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The aftermath of the fire in Ookala
Posted on Jul 20, 2010 by Susie Collins in Susie Collins, Susie's Secret Garden
In the days following my neighbor’s house fire, I have discovered gems of protection and compassion from unexpected places.
The charred bamboo that protected my home from the heat and flames of my neighbor's house fire. That's my red roof in the background.
On Saturday, I blogged about my neighbor Dr. Tawn Keeny’s house burning down on Thursday. Since then, I’ve spent a lot of time processing what happened.
As I described in my post, while the tragic event unfolded before my eyes, several helpers and I were manning hoses on my fence line. We had a two-fold mission: keep the fire from encroaching my property on the ground where it was creeping along in the grass, and hose down my house itself as well as the foliage in my gardens that run along the fence line. I wrote about the tall bamboo that took most of the heat during the worst of the fire, even going up in flames at one point, which in turn incinerated the top of the 40-foot palm at right in the photo above.
That half hour of fighting the fire was definitely one of the more intense half hours of my life! Time got very contorted, although I believe only about 15-20 minutes went by before firefighters arrived and beat the flames back for good. I am extremely grateful for my helpers for all their hard work in protecting my home, and I’m also extremely grateful for the firefighters who brought the fire under control– they arrived just in time; I just don’t know how much more we could have done with our little hoses as the fire grew and grew.
Over the days following the fire, we watched as more of the bamboo leaves on the fence line turned brown and died. Our avocado tree is located a bit further up the fence line, above a wood pile that stubbornly burned long after the house fire was extinguished. That avo tree also showed more brown leaves each day. Here’s how it looks today looking up the hill toward the avocado tree:
Looking up the fence line with bamboo at right and my avocado tree at the far end.
The burned site in its totality is sobering, and it feels a bit like sacred ground. I took many photos this morning of the burned home itself, but I don’t feel comfortable publishing them since it’s not my property. The home is owned by my friend and family physician Dr. Tawn Keeney, and I know this tragedy has affected him deeply. I don’t want to add to that sorrow.
I am feeling very grateful for these beautiful bamboos. The fire inspector told us that he rarely sees adjacent homes catch fire when there is foliage between the houses. I can’t even describe to you how hot the fire was. The wood pile you see above spontaneously erupted in flames simply from the heat coming from the flames originating in the house. That entire space you see there above was a wall of fire at least 25 feet high and reaching all the way from the burning house at left to the hedge at right. Trees located much farther away from the fire up in the back were fried. So I know that were it not for this thick bamboo hedge, the gardens closest to my home would have been overwhelmed with heat, and who knows what would have happened to my house. There were two propane tanks against the house less than 30 feet from this hedge.
But look at the inside gardens on my side of the bamboos:
My secret garden would have been fried, and possibly my house, were it not for this magnificent bamboo and my helpers who kept everything wet during the fire.
We called the nursery where we bought the bamboo, Quindembo, to find out if they thought the fire damage was fatal. Quindembo owners Susan Ruskin and Peter Berg thought not and told us to look at the base to find the new shoots. Sure enough, there at the base are the new shoots already emerging– how’s that for timing? And we learned something else very interesting. Because bamboo stems are full of water, Susan and Peter said they don’t catch fire. So while the leaves of the tall blow pipe bamboo ignited in a roaring flame, the stems did not catch like a tree probably would have under that intense heat. Those bamboos shielded my gardens and my home from that wall of fire. They were the guardians of Susie’s Secret Garden.
In the days following the fire, I also have discovered gems of compassion from unexpected places. Because of my Multiple Chemical Sensitivity, I started to get sick from the fumes of the charred rubble from the burned house. It rained Saturday night and Sunday morning, but when the sun hit the rubble on Sunday afternoon, the evaporation released something from the ash that hit me like diesel fumes. It was as if a diesel truck was idling outside the window. I started feeling nauseous, dizzy, fatigued, and my eyes became irritated. When the good doctor found out, he contacted the demolition company that’s scheduled to raze and haul away the rubble, telling them that I have a medical condition and asking if they could move up the date of the job because I was getting ill from the fumes of the ash. The owner of the company said yes, he could rearrange their schedule and come sooner, starting tomorrow morning. How incredible is that?
I think this extraordinary act shows so much about who Dr. Keeney is. He’s my family physician as well as a friend and neighbor, and in his time of loss, he cared enough to pick up the phone to see if the date of demolition could be moved up because I was becoming ill. It also says a lot about the company owner, Louis Nobriga of D & D Trucking, who was flexible and responsive to a client’s request. It also shows the kind of magic that can happen when you live in a small, tight-knit community.
I’ll be vacating my home during the demolition and removal of debris. We know that dust control will be implemented, and we’ll take measures to seal up the house just in case some particulate matter becomes airborne.
Meanwhile, Dr. Keeney is already making plans for building a new home, a bit further up the hill where he will have a spectacular view of the ocean.
Susie's Secret Garden, my sanctuary.
©2010 Susie Collins
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