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

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

Perfume allergy, MCS and lupus

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

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

A happy happening in a sad setting

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

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

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

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

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

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

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

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

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

Psychiatrists propose induced convulsions as treatment for Multiple Chemical Sensitivity

Counter action

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

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

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

Author: Mette Toft, Denmark

© Photos: Torben Bøjstrup

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

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

New National Study Finds Decrease in Pediatric Injuries Associated with Household Cleaners Children younger than 6 years still at high risk of poisoning

Every year in the United States, there are more than 1.2 million poison exposures among children younger than 6 years. In recent decades, household cleaning products have consistently been one of the leading sources of pediatric poisoning. A new study conducted by the Center for Injury Research and Policy of The Research Institute at Nationwide Children’s Hospital found that from 1990-2006, an estimated 267,269 children younger than 6 years were treated in U.S. hospital emergency departments for injuries attributable to household cleaning products. During the 17-year study period, researchers noted a 46 percent decrease in the number of injuries.

Data from the study, being released online August 2 and appearing in the September issue of Pediatrics, show that most of the household cleaner-related injuries were poisonings, with children ages 1-3 years accounting for the majority (72 percent) of the injuries. Bleach was the cleaning product most commonly associated with injury (37.1 percent). While approximately one-third of the injuries occurred through contact with the cleaning product, the more frequent means was ingestion (62.7 percent), and spray bottles were the most common storage container (40.1 percent).

“Interestingly, spray bottles were the only major storage source that increased over the study period,” said study lead author Lara McKenzie, PhD, principal investigator at the Center for Injury Research and Policy at Nationwide Children’s Hospital. “Although rates of household cleaner-related injuries from regular bottles and original containers decreased during the study period, spray bottle injury rates remained constant. This area is worthy of further research.”

The good news is that the number of injuries decreased almost by half during the study period, but the bad news is that there were still nearly 12,000 children younger than 6 years who suffered injuries from household cleaning products in 2006.

“Young children are curious about their surroundings and tend to explore their environment by putting things in their mouths,” said Dr. McKenzie, also a faculty member of The Ohio State University College of Medicine. “This general sense of inquisitiveness, combined with increased mobility, the ubiquitous nature of household cleaning products and the ease of accessibility, place young children at high risk of injury.”

Parents and caregivers must do their part to prevent childhood poisonings. According to Heath Jolliff, DO, associate medical director of the Central Ohio Poison Center at Nationwide Children’s Hospital, parents should store poisonous substances in locked cabinets, out of sight and reach of children.

“It’s important to only purchase cleaners with child-resistant packaging, keep all products in their original containers and properly dispose of leftover or unused products,” Dr. Jolliff, also a faculty member at OSU College of Medicine, said.

Parents should also know what to do if they suspect their child has come in contact with a poison. Dr. Jolliff advises to immediately contact the Poison Center at 1-800-222-1222 (this national number will direct callers to their local Poison Center), unless the child is unconscious, not breathing, or having seizures, in which case parents should call 9-1-1.

This is the first published study using nationally representative data to examine poisonings from household cleaning products among children younger than 6 years for an extended time period. Data for this study were collected from the National Electronic Injury Surveillance System (NEISS), which is operated by the U.S. Consumer Product Safety Commission. The NEISS dataset provides information on consumer product-related and sports and recreation-related injuries treated in hospital emergency departments across the country.

Reference:

Nationwide Children’s Hospital, New National Study Finds Decrease in Pediatric Injuries Associated with Household Cleaners Children younger than 6 years still at high risk of poisoning, Columbus, OH – 8/2/2010.

-

Further Articles about Children’s Health:

• Oil Spill: Kids in the Gulf
• Pesticides in kids linked to ADHD- Attention-Deficit/Hyperactivity Disorder, study finds
• Our Planet – Our Children – How are your Children doing?
• EPA releases Guide to help Scientists understand Children Exposure to Pollutants
• Common Plastics Chemicals linked to ADHD Symptoms

When the book, “Missing. A Life Destroyed by Chemical Sensitivity” came into bookstores, the sales were surprisingly high. The author of this book, Eva Caballé is chemically sensitive and can exist only within the walls of her safe apartment. Several air filtering machines run day and night. She can tolerate only a few foods, and her water must be specially filtered. Visitors are not allowed into her apartment because the fragrance and detergent residues could cause her to experience a severe reaction. Despite the severity of her disease, this Spanish woman insists on enlightening the public about this condition. Her blog, NO FUN, became her mouthpiece and is read daily by thousands.

Through interviews which Eva’s husband David gave on TV, radio, and to newspapers, Eva’s story was known before her published book was on the shelves. Now her book will be made for a radio series.

Last month, David gave interviews for a radio program called “Vital Space” which discusses chronic illnesses. The program producers were enthusiastic about Eva’s book and want to make the public more aware of chemical sensitivity. Details regarding MCS are not yet well know in Spain.

The response was enormous, which led to the idea of the MCS book as a radio series.

Eva and her husband David agreed, and wrote an editorial for this series. Two professional actors, whose voices are very similar to Eva and David have been hired. A moderator has also been hired to coordinate the recordings. The whole book has been set to music and accompanied by background music. Next fall the series will begin. For each chapter there will be ten minutes of airtime available. Over a period of 21 weeks radio listeners will experience the naked truth about Multiple Chemical Sensitivity.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, July 26, 2010.

Translation: Many thanks to Christi Howarth!

-

Articles written by Eva Caballé:

• Naked Truth about MCS
  
• Metamorphosis insinde Multiple Chemical Sensitivity
• Dreams that kill
• Manifesto – We know they are lying to us
• Interview with Eva Caballé about Multiple Chemical Sensitivities and her book

Finding removes the idea once and for all that IBS symptoms are not real and are “only psychological”

A large academic study has demonstrated structural changes in specific brain regions in female patients with irritable bowel syndrome (IBS), a condition that causes pain and discomfort in the abdomen, along with diarrhea, constipation or both.

A collaborative effort between UCLA and Canada’s McGill University, the study appears in the July issue of the journal Gastroenterology.

The findings show that IBS is associated with both decreases and increases in grey matter density in key areas of the brain involved in attention, emotion regulation, pain inhibition and the processing of visceral information.

IBS affects approximately 15 percent of the U.S. population, primarily women. Currently, the condition is considered by the medical field to be a “functional” syndrome of the digestive tract not working properly rather than an “organic” disorder with structural organ changes. Efforts to identify structural or biochemical alterations in the gut have largely been unsuccessful. Even though the pathophysiology is not completely understood, it is generally agreed that IBS represents an alteration in brain-gut interactions.

These study findings, however, show actual structural changes to the brain, which places IBS in the category of other pain disorders, such as lower back pain, temporomandibular joint disorder, migraines and hip pain — conditions in which some of the same anatomical brain changes have been observed, as well as other changes. A recent, smaller study suggested structural brain changes in IBS, but a larger definitive study hadn’t been completed until now.

“Discovering structural changes in the brain, whether they are primary or secondary to the gastrointestinal symptoms, demonstrates an ‘organic’ component to IBS and supports the concept of a brain-gut disorder,” said study author Dr. Emeran Mayer, professor of medicine, physiology and psychiatry at the David Geffen School of Medicine at UCLA. “Also, the finding removes the idea once and for all that IBS symptoms are not real and are ‘only psychological.’ The findings will give us more insight into better understanding IBS.”

Researchers employed imaging techniques to examine and analyze brain anatomical differences between 55 female IBS patients and 48 female control subjects. Patients had moderate IBS severity, with disease duration from one to 34 years (average 11 years). The average age of the participants was 31.

Investigators found both increases and decreases of brain grey matter in specific cortical brain regions.

Even after accounting for additional factors such as anxiety and depression, researchers still discovered differences between IBS patients and control subjects in areas of the brain involved in cognitive and evaluative functions, including the prefrontal and posterior parietal cortices, and in the posterior insula, which represents the primary viscerosensory cortex receiving sensory information from the gastrointestinal tract.

“The grey-matter changes in the posterior insula are particularly interesting since they may play a role in central pain amplification for IBS patients,” said study author David A. Seminowicz, Ph.D., of the Alan Edwards Centre for Research on Pain at McGill University. “This particular finding may point to a specific brain difference or abnormality that plays a role in heightening pain signals that reach the brain from the gut.”

Decreases in grey matter in IBS patients occurred in several regions involved in attentional brain processes, which decide what the body should pay attention to. The thalamus and midbrain also showed reductions, including a region — the periaqueductal grey — that plays a major role in suppressing pain.

“Reductions of grey matter in these key areas may demonstrate an inability of the brain to effectively inhibit pain responses,” Seminowicz said.

The observed decreases in brain grey matter were consistent across IBS patient sub-groups, such as those experiencing more diarrhea-like symptoms than constipation.

“We noticed that the structural brain changes varied between patients who characterized their symptoms primarily as pain, rather than non-painful discomfort,” said Mayer, director of the UCLA Center for Neurobiology of Stress. “In contrast, the length of time a patient has had IBS was not related to these structural brain changes.”

Mayer added that the next steps in the research will include exploring whether genes can be identified that are related to these structural brain changes. In addition, there is a need to increase the study sample size to address male-female differences and to determine if these brain changes are a cause or consequence of having IBS.

Literature:

University of California, Study finds structural brain alterations in patients with irritable bowel syndrome, Los Angeles, July 22, 2010.

Photo: UCLA

More interesting EMM Articles:

• CFS finally recognized as medical impairment under guidelines
• The psychogenic thesis for environmental diseases no value for science, destructive for legal rights
• MCS – Multiple Chemical Sensitivity a disease caused by toxic chemical exposure
• The department of Health of the Austrian Government recognizes MCS – Multiple Chemicval Sensitivity as a physical disease
• The naked truth about MCS – Multiple Chemical Sensitivity including foreword about German Situation

P.A.N.D.O.R.A. NeuroEndocrineImmune (NEI) Center Resolution Approved by the New Jersey State Senate

Coral Gables, FL, July 17, 2010 –(PR.com)– Resolution SR-20 supporting the establishment of the NeuroEndocrineImmune (NEI) Center™, the first research center in the state of New Jersey and in the U.S., dedicated to understanding and treating chronic neuroendocrineimmune (NEI) illnesses which includes chronic fatigue syndrome, fibromyalgia, multiple chemical sensitivity, Gulf War Illness and other bacterial & viral infections chronic illnesses was passed unanimously by 38-0 votes by the New Jersey State Senate on June 10, 2010.

Senate Resolution (SR) 20, sponsored by Senator Christopher “Kip” Bateman (R), Senate Deputy Conference Leader, and Senator Loretta Weinberg (D), Chair of the Senate Health Committee, cited studies that an estimated 20 million American adults and children suffer with NEIDs. The economic impact and loss of worker productivity in the United States due to CFS/ME, alone, is estimated to be over $9 billion per year. Chronic illness represents 75% of all the health care costs in the U.S.

“It makes sense to locate the NEI center in New Jersey,” said Senator Weinberg. “As the nation’s medicine chest, New Jersey is home to research institutions and private businesses that can cooperate to find a cure for these debilitating diseases.”

Senator Bateman added, “I look forward to the passage of Senate Resolution 20, solidifying legislative support for the research center, and have high hopes that this will, in fact, be a great step forward toward finding answers for the sufferers of these debilitating diseases.”

Assembly Resolution 202 passes unanimously

Late last year, a similar resolution unanimously passed the New Jersey State Assembly 78-0. “Having a research center… is essential to promoting research into the etiology of, and therapeutic interventions for neuroendocrineimmune disorders (NEIDs),” according to Assembly Resolution (AR) 202 which was sponsored by Assemblyman Upendra Chivukula (D), Deputy Speaker; Assemblyman Herb Conaway, Jr. (D), Chairman, Health Committee; Assemblywoman Connie Wagner (D), Vice-Chairman; and Assemblywoman Mary Pat Angelini (R), member of the Health Committee

P.A.N.D.O.R.A. partners with the Lanford Foundation-Lifelyme™, Inc.

To be based in Newark, New Jersey, the NeuroEndocrineImmune (NEI) Center™ is a community patient-driven project of P.A.N.D.O.R.A, (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc) in partnership with the Lanford Foundation-Lifelyme™, Inc.

The NEI Center™ is the first research center to incorporate scientific and clinical research, quality in patient care, and social services, all in one state-of-the art facility. The establishment of The NEI Center™ is based on the philosophy that the similarities in symptoms of neuroendocrineimmune disorders (NEIDs) are the human body’s response to similarities in the underlying pathophysiologies that cause these disorders.

The cornerstone of the NEI Center’s mission is that discoveries and advances made in any one of the NEIDs will be applicable and beneficial to other NEIDs, thereby bringing medical researchers closer to a cure. At its inception, the NEI Center™ will include research of the following disorders/illnesses:

Chronic fatigue syndrome (CFS), fibromyalgia (FM), Gulf War syndrome or illness (GWS/I), multiple chemical sensitivity (MCS), and other associated bacterial and viral illnesses.

“Moral and political victory,” said Marly Silverman, a CFS and fibromyalgia patient who founded P.A.N.D.O.R.A. in July 1, 2002, “On behalf of P.A.N.D.O.R.A., we are mindful of the historical significance of the unanimous vote by the New Jersey Senate as well as by the New Jersey Assembly in 2009. Patients across this country will be celebrating what is an amazing and pivotal moment in the history of the neuroendocrineimmune disorders community. The New Jersey Legislature has demonstrated a caring commitment to a community of patients who for the first time in the state of New Jersey can look forward to a brighter and fruitful future.”

Veny W. Musum, chairman of the NEI Center Project, who was diagnosed with chronic Lyme disease in 2004 along with his wife, Patricia, added, “The passage of SR 20 is a moral and political victory for millions of individuals stricken with neuroendocrineimmune disorders who have been living far too long without the compassionate support, research and treatment options they deserve. I am proud of my state of New Jersey!”

Advocates Extraordinaire™ & community support

“The overall community support has been outstanding for this patient-driven, physician-approved project. The unanimous votes by each New Jersey senator came about because of the involvement of individuals who participated in the Advocate Extraordinaire™ program, by making calls, writing e-mails and thanking the New Jersey Legislature for their vision and support of the Center,” said Dr. Kenneth Friedman, one of the founding board trustees of the NEI Center, as well as former member of the CFS Advisory Committee, and a member of the Executive Board of P.A.N.D.O.R.A.

“The New Jersey legislators unanimous support for the NEI Center reflects the kind of leadership needed to bring about positive change in our nation’s Health Care,” said Sandi Lanford, Co-founder of the NEI Center™ and the President-Founder of the Lanford Foundation-Lifelyme™, Inc, who was born and raised in New Jersey. The overall community support has been outstanding for this patient-driven, physician- approved project. The unanimous votes by the New Jersey Legislature came about because of the involvement of individuals who participated in the Advocate Extraordinaire™ program, by making calls, writing e-mails and thanking the New Jersey legislators for their vision and support of the Center,” said Dr. Kenneth Friedman, one of the founding board trustees of the NEI Center, as well as former member of the CFS Advisory Committee, and a member of the Executive Board of P.A.N.D.O.R.A.

Dr. Lesley Fein, member of the NEI Center Project team, stated “This center will be a beacon of hope for patients nationwide, and a place which will bring scientific innovation in New Jersey as well as in the rest of the country.”

Present at the passage of the law were Veny Musum, Chairman of the NEI Center Project and Debbie Floyd, team member of the NEI Center™ project.

NEI Center set to open by 2012

The NEI Center founders are already preparing fundraising efforts to make the Center operational by late 2011-early 2012. For more information about The NEI Center™, visit www.neicenter.com.

-

About P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy – Based in Coral Gables, Florida, P.A.N.D.O.R.A. was founded on July 1, 2002 by Marly C. Silverman, a chronic fatigue syndrome and fibromyalgia patient. Its mission is to raise awareness of the plight of persons with chronic fatigue syndrome, fibromyalgia, chronic Lyme disease, multiple chemical sensitivities/EI, and Gulf War illness, and advocate on quality of life issues. P.A.N.D.O.R.A.is Built on Hope – Strong on Advocacy – Finding a Cure through Research. For more information, visit www.pandoranet.info.