The broadest possible integration of disabled people is the goal of all countries which are signatories to the UN Disabilities Convention. The countries which have signed this convention and ratified it, may be viewed here:

Rights and Dignity of Persons with Disabilities

This internationally binding document has validity for those countries who have signed and ratified it. Direct efforts should have been pursued by the signatories so that all disabled children receive an education. No disability must be preferred over an other. MCS – Multiple Chemical Sensitivity is a physically caused disability which needs recognition in the educational realm.

In the U.S. and Canada, there is a steady growing number of schools and local univer- sities that are integrating policies for chemically injured students and adapting conditions to include this disability. The transition has been mainly on a volunteer basis initially, with perfume bans and an effort to use chemically free cleaning products.

Students with MCS

There are severe cases of children and young teens with chemical compromises which seem to have little hope of a successful future due to their disability. The chemical triggers are so overwhelming on their various physical systems that they are unable to attend a traditional school setting without well thought out appropriate accommodations.

A big problem for these students in traditional school settings is falling behind academically. Due to their reaction difficulties at school, they miss a lot of instructional time. Parents report their children missing hours, days, and sometimes months of school , and trying to catch up at home with all the required instructional materials from the teacher(s) is extremely difficult.

Then there is often trouble with the school or school authorities. Whether the modifications for these disabled students will be feasible to get the education requirements needed depends on the consideration of the school, the classmates, building maintenance, chemical substances used at the school site, in and outside the individual classroom.

Questions to be answered in individual countries:

• How does my country integrate children and young people who have chemical sensitivity?
• What are the guidelines for dealing with chemically sensitive students in a traditional school setting or what accommodations can the school offer?
• Are schools in my country responsive to students with MCS?
• Do authorities in my country have policies in place which enable chemically sensitive students to achieve a quality education?
• Does my country cover free internet schooling education for students suffering with chemical sensitivities?
• What policies would schools have to change in order to successfully integrate students with MCS?

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 Dam Bak 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

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 MCS 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.

The EMM Blog will publish several articles reporting the consequences for MCS sufferers. 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 second article of a series entitled, “The Danish MCS Research Centre in the International Field of Vision,” was written by a nurse who is suffering from MCS.

If you missend the first article of the series, read here >>

Mette Toft: MCS – Multiple Chemical Sensitivity: A Report from Denmark

What are the interests within the individual research groups regarding MCS?

Bodil Dam Bak Nielsen – 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“.(1) The study results have shown that in MCS sufferers, the activity of erythrocyte catalase and GST were lower, whereas Gpx was higher than normal. Both reduced and oxidized glutathione were lower during nitric oxide (NO) / peroxynitrite (ONOO) raised in the MCS group. The fatty acid profile of MCS patients were shifted to the saturated part, and the IFN-gamma, IL-8, IL-10, MCP-1, PDGFbb and VEGF were elevated.

Danish MCS Science Center questions the work of colleagues

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):

“Since this is only a single study (De Luca et al.), it is necessary to review the results and pursue new studies before a conclusion can be drawn regarding the importance of immunological factors in fragrance and Chemical Sensitivities”.

“This is why the Danish Research Centre for Chemical Sensitivities plans to examine whether heightened cytokines or inflammatory factors can be detected in those with chemical hypersensitivity – REGARDLESS OF CONTACT ALLERGIES”.

Selective control?

The results of the Italians have not only showed increasing of the messenger interferon (IFN)-gamma, but also point to several metabolic parameters for accelerated lipid oxidation, as well as increased nitric oxide production and reduction of glutathione in combination with elevated inflammatory cytokines, which confirms a biological definition and diagnosis of MCS.

Contact allergy, a diagnosis of exclusion in MCS?

The former head of the Danish Research Centre for Chemical Sensitivities, Jesper Elberling , who is the senior researcher and expert, knows that the messenger interferon (IFN)-gamma plays a role in the development of contact dermatitis because of his work in the dermatology department at Gentofte Hospital. This is the cytokine messenger that the Italians have found in their research in MCS patients. The  Danish Research Centre for Chemical Sensitivities realizes from its own questionnaire that many MCS sufferers also suffer from contact allergies.

Because of this it is important to ask the following questions:

• Is the Danish Research Centre for Chemical Sensitivities, therefore, consciously and deliberately selecting only THIS small part of the research result of the Italians to verify? Shouldn’t ALL research findings be verified before a conclusion can be drawn as to their validity?
• Shouldn’t one of the aims of this planned research study be to look at those MCS sufferers with a contact allergy and not exclude MCS patients with contact allergy to see if the result changes?
• Is the Danish Research Centre for Chemical Sensitivities able to demonstrate that this result (the De Luca A et al. research) can be attributed, according to a large part of the MCS sufferers who participated in the study, must have suffered from contact dermatitis, and that this research can therefore be attributed to this fact?

Will their study results attempt to discredit the Italian research?

Only then the Danish Research Centre for Chemical Sensitivities could thus bring the present research results into disrepute, which would neglect the complete research result of the Italians and cast their research in a bad light.

Why not complete control?

This raises the question of why the Science Center has not decided to check the other research results of the Italian scientists who need to be reviewed well before the Center may consider their findings valid.

Martin Pall’s theory (the fatal NO / ONOO cycle), states that among other things, MCS sufferers experience an increased nitric oxide production, which has indeed been demonstrated by the researchers from Italy. The Danish Research Centre for Chemical Sensitivities cannot refute this research result.

The Italian scientists have shown that, in accordance with Martin Pall’s theory, the vicious biochemical NO / ONOO cycle,three factors decreased compared to the healthy control group. It is odd that the Danish Research Centre for Chemical Sensitivities does not have evidence or the desire to disprove this.

It appears that the Italian doctors did not choose to include contact allergies in their research findings. Naturally, most biochemical substances in the body are influenced by many factors or diseases; therefore, the wish to correlate precisely this factor (interferon (IFN)-gamma) with something that is known to influence it as well (i.e. contact allergies) can be seen as an attempt to create uncertainty around the Italian research results. In this way the entire Italian study, and its results that are so important to MCS sufferers, will be questioned. Is this the intended aim of the Danish Research Centre for Chemical Sensitivities?

We certainly hope not, and hope that independent scientists will begin to verify the accuracy of all the other results, and not only select a single result, in the hopes of being able to refute the validity of the research.

Author: Bodil Dam Bak Nielsen for CSN – Chemical Sensitivity Network, August 2010

Translation: Thank you very much to Christi Howarth!

References:

1. Chiara De Lucaa, Maria G. Scordob, Eleonora Cesareoa, Saveria Pastorea, Serena Mariania, Gianluca Maiania, Andrea Stancatoa, Beatrice Loretic, Giuseppe Valacchid, e, Carla Lubranoc, Desanka Raskovicf, Luigia De Padovac, Giuseppe Genovesic and Liudmila G. Korkinaa, Biological definition of multiple chemical sensitivity from redox state and cytokine profiling and not from polymorphisms of xenobiotic-metabolizing enzymes, doi:10.1016/j.taap. 2010.04.017, Toxicol Appl Pharmacol. 2010 Apr 27
2. Danish Research Centre for Chemical Sensitivities, Italiensk studie sætter fokus på signalstoffer, 18.07,2010

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

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

Related articles:

• Predictions of Multiple Chemical Sensitivity Mechanism Confirmed by Roman Study
• MCS – Multiple Chemical Sensitivity – A Disease Caused by Toxic Chemical Exposure
• Research on Multiple Chemical Sensitivity (MCS)
• Unanimous Vote for Research Center for MCS, CFS, FMS, GWS in New Jersey
• Reckless Self-Interest Of The Fragrance Industry

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