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

Part III:

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, which upheld the rejection on the following grounds:

“…there is no medical documentation for the chronic manifestations of the disease (MCS), its causality, lack of diagnostic criteria and treatment, as well as there is no medical documentation that the mask can sufficiently remedy functionality in her daily life.”

After this incident, a number of MCS patients had their grants for the respirators with filters also suspended by their local authorities, referring to the above ruling.

At the same time, there is no hospital ward in Denmark at all that is committed to examine, diagnose, treat and/or guide this group of severe MCS suffers. All instances refer to the Research Center for Chemical Sensitivities in Copenhagen, which was established in 2006 with minimal grants, but which does not occupy itself with MCS patients, except for using them as test subjects in PhD studies or projects.

The Research Center denies research effects of mask respirators on the MCS population

After the ruling by the appeals board, a great number of MCS sufferers contacted the Research Center to make them document the effects of the respirators with filters for the MCS population, since these are for the time being, the only efficient treatment option for those with MCS, besides the so-called avoidance strategy which leads to social isolation and thus to the possible risk of a subsequent psychological impairment due to isolation from the outside world in the MCS patient’s life. However, this isolation can be reduced by wearing a mask respirator.

To the MCS sufferers’ great astonishment and despair, the 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.

Thus, the Research Center does not prioritize spending research funds on a study of mask respirators, but focuses instead on researching possible disease mechanisms and other therapy strategies. (1)

In this way, Danish MCS sufferers can see no prospect of anyone obtaining the documentation required by the Danish social system. Thus there is no prospect of being granted mask respirators, the aid which is extremely vital for sufferers – a crazy paradox not worthy of a modern welfare society.

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

Simultaneously with the above, the Research Center was following a male MCS sufferer who accepted being subjected to electroconvulsive therapy over six months (at first eight electroshock treatments over three weeks, and after that every two weeks), and on the basis of this one MCS patient’s subjective evaluation of the effect of this electroconvulsive therapy – a ”study” that, of course, was neither placebo-controlled nor double-blind – the Research Center published a scientific article: ”Electro- convulsive Therapy Substantially Reduces Symptom Severity and Social Disability Associated With Multiple Chemical Sensitivity: A Case Report. “Elberling et al. (2) with this conclusion: “In this case, a substantial, positive effect on symptom severity and social disability related to MCS was obtained by an initial somatizing patients course and maintenance treatment. Electroconvulsive therapy should be considered an option in severe and socially disabling MCS, but more studies are needed to evaluate if ECT can be recommended as a treatment for MCS.”

The limited research funds are gladly spent on Mindfulness therapy

Also, the Research Center is planning to spend its very limited funds to research the effects of Mindfulness based cognitive therapy on MCS.

In 2008 the Research Center performed a pilot project study in cooperation with the Center of Psychiatry, The Copenhagen University Hospital, where the title of this pilot project on the homepage of the Copenhagen University Hospital was ”Mindfulness based cognitive therapy of somatizing patients, primarily MCS patients.”

However, this title was in haste changed to: “The Effects of Mindfulness Based Cognitive Therapy with Persons with Hypersensitivity to Fragrances and Chemical Substances,” since MCS sufferers found out that the Research Center, in cooperation with the Center of Psychiatry, considered them mentally ill. Jesper Elberling, the then scientific leader of the Research Center, had meanwhile passed it all off as a “mistake.”

Right now, in continuation of this above-mentioned pilot project, a PhD study is being planned, to investigate the effect of Mindfulness on the MCS population. This is obviously one of those therapy strategies in which the Research Center gladly prioritizes its limited research funding, notwithstanding that Danish MCS sufferers again and again have told the Research Center that mask respirators are an efficient therapy strategy, whereas no one has ever heard or hears about MCS sufferers who have experienced any effects on their MCS from Mindfulness therapy.

Will the Research Center follow its own persistence and demand the placebo-controlled and double-blind studies in its coming research?

In the near future, the Research Center will start up its new study on the effects of Mindfulness therapy on MCS, and we shall then see if the Research Center will actually live up to its own demands and arguments that therapy effects require [DP1] a clinically controlled study, which is both placebo controlled and double-blind, in order for the results to become reliable and useful.

These demands apply hopefully not only for therapy forms, (the effects of which the Research Center does not want to document), such as half mask respirators with activated charcoal filters that are indeed vital to most severe MCS patients, and at the moment are the only treatment strategy that gives MCS sufferers the temporary possibility of being able to move about in the public domain, and which severe MCS sufferers experience as a highly efficient therapy strategy. However this highly efficient therapy strategy lacks – according to the Research Center – ”scientific documentation” which apparently nobody in Denmark wants to obtain.

Author: Bodil Nielsen, Denmark

Translation: Dorte Pugliese for CSN – Chemical Sensitivity Network

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

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

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

There is a connection between fibromyalgia and MCS confirmed by studies. Patients suffering with fibromyalgia (FM) have reported frequent complaints which are outside of their problem area of the musculoskeletal system, and chemically sensitive patients, in addition to their reactions to low doses of chemicals, repeatedly experience pain in different body regions. Fibromyalgia is commonly regarded as an atypical soft-tissue rheumatism. The diagnosis is made mainly by an examination of 18 pressure sensitive parts of the body, called tender points. Scientists from Scandinavia reported more than ten years ago that there is an overlap between MCS and fibromyalgia, which has major relevance for the medical diagnosis for patients. A recent Canadian study in February 2010 confirmed this result. The authors of this study, in a medical journal, appealed for adequate education and specific related information in the health field and to the public in order to improve the prognosis for patients.

Pain on pain

Patients with fibromyalgia or chemical sensitivity often experience pain which they describe as a “toothache all over the body.” Scientists from Scandinavia reported in the late nineties of the existing relationship between these two diseases.

What exists for fibromyalgia patients also exists for MCS patients?

The objective of a pilot university rheumatology study was to determine how often MCS occurs in patients with Fibromyalgia. The research team designed a questionnaire decided whether the patients indeed also had MCS. The physicians used criteria from a new study by using an immunological profile of patients who could be identified with this disease. Patients responded with a yes or no response to confirm the presence of 48 FM-related symptoms. (1)

Study finds link between MCS and FMS

The results of the study were published in the first half of 1997 in the medical journal, “Scandinavian Journal of Rheumatology.” Thirty-three of the 60 patients with fibromyalgia fulfilled the criteria for MCS. Eleven of those patients met more restrictive criteria, which demonstrated the high severity of chemical sensitivity. In addition, scientists found that the sensitivity symptoms and reactions of the triggering substances that were most frequently cited by the FM patients were similar to those reported by MCS patients in other studies. A chemical sensitivity existed in more than half the patients with fibromyalgia, thus the Scandinavian researchers concluded that MCS may be an additional symptom in the complex spectrum of fibromyalgia.

Canadian study confirmed the simultaneous existence of MCS and FMS

The fact that both conditions exist simultaneously has been affirmed by studies in recent years. The targeted diagnosis should be considered because of the potentially dramatic effects on the sufferers of MCS and FMS. This was evident in a study of the environmental clinic (EHC) in Toronto. The Canadian researchers studied 128 patients for the presence of MCS, CFS, and FMS, and identified the impacts in their everyday lives. Eight of the 70 patients received the MCS, CFS, or FM diagnosis, while the remaining patients had two or three overlapping diagnoses. What a great impact in the study of environmental disease for patients and readers of the magazine for Canadian GP, in the February 2010 edition. Most of the study participants (68%) had to leave work, on the average of three years after the onset of their symptoms due to their illness. (2)

Relevance for the diagnosis of environmental and mainstream medicine

The studies of 1997 and early 2010 reveal that medical practices must take a thorough medical history of the patient and make an appropriate diagnosis at the onset of one of these two diseases of FM or MCS. After the clinical results indicate a patient has MCS, then there needs to be a clarification whether or not the patient also has fibromyalgia. This can be detected with little effort by any doctor by checking the 18 tender points. At the same time, fibromyalgia patients must be asked about a hypersensitivity to chemicals which is likely, despite the lack of the study results being integrated into mainstream medicine over the last ten years. It is extremely important for rheumatologists to be familiar with the diagnosis of MCS for their FM patients. The prognosis for fibromyalgia patients significant improvement could be then specifically targeted with treatments and appropriate prevention strategies which deal with the triggering affects of chemicals.

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

Translation: Thank you to Christi Howarth.

Related articles:

• New Criteria Proposed for Diagnosing Fibromyalgia
• Unanimous Vote for Research Center for MCS, CFS, FMS, GWS in New Jersey
• Research on Multiple Chemical Sensitivity (MCS)
• Fibromyalgia Patients Show Decreases In Gray Matter Intensity

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.

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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