For several years the Swedish Prof. Dr. Eva Millqvist researched the disease of hyperreactivity of the respiratory tract and the environmental condition of Chemical Sensitivity (MCS). She specializes in the range of responses to respiratory irritants.

Sick from odors and fragrances

Patients with respiratory symptoms which are triggered by chemicals and odors, are commonly found in allergy clinics. According to Millqvist and her team, these health problems are not explained by asthma or allergic reactions.

German patients frequently report that after they report reactions to chemicals or odors to their allergist, the prospect of seeing a psychologist has been recommended. Whether or not this recommendation is actually appropriate for these patients, it is precisely what this new study from Sweden addresses.

Studies showed reactions

Millqvist’s previous studies have shown that MCS patients often have an increased sensitivity to inhaled capsaicin. This ingredient of chili is famous sensory reactivity. A diagnosis of sensory hyperreactivity of the airways (SHR) is proposed for these kinds of complaints.

In a recent study this renowned scientist and two colleagues, sought to discover whether there is a relationship between asthma and sensory hyperreactivity (SHR). In addition, the research team wanted to investigate whether patients with signs of SHR had increased psychiatric morbidity (anxiety, depression, etc.).

Patients were subjected to tests and questionnaires

The researchers took 724 patients with suspected allergies or asthma from an asthma center. All patients had a questionnaire regarding reactions and behavioral disorders caused by fragrant substances.

A standardized Capsaicin test was carried out and then a questionnaire was given to assess psychiatric morbidity in patients with severe chemical sensitivity to identify those who suffer from SHR.

No evidence of depression or anxiety

Only about 6% of the asthma patients from the allergy center, who participated in the study, had sensory hyperreactivity (SHR). Millqvist and her colleagues stated that this is in consistent with the prevalence in the general Swedish population. There was no significant evidence that SHR is consistent with anxiety or is related to depression.

Patients should insist on precise diagnostic evaluation

The study appeared in the July 2010 issue of the medical journal “Annals of Allergy, Asthma & Immunology.” Those patients who respond to chemicals and odors with hyperreactive respiratory symptoms should perhaps seek an experienced environmental medicine professional if their allergist makes a reference to the possibility of a mental illness.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, 2. September 2010.

Translation: Thank’s to Christi Howarth.

Literature:

Johansson A, Millqvist E, Bende M., Relationship of airway sensory hyperreactivity to asthma and psychiatric morbidity, Department of Respiratory Medicine, Central Hospital, Skövde, Sweden, Ann Allergy Asthma Immunol. 2010 Jul; 105(1):20-3.

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

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.

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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.

A young chemically sensitive woman is in need of help due to pesticide spraying

Elvira Roda lives in the Spanish region of Valencia and is in great need. Her family and friends are asking for international help. The 35-year-old woman is suffering from Multiple Chemical Sensitivity, MCS. The humidity and heat where she lives means an increased number of bugs and mosquitoes. The officials from her area are using highly toxic organophosphate pesticide spraying in the trees and roadsides (see video). These neurotoxins are very harmful to humans and animals. Elvira’s family drew up a petition on July 1st, 2010 to ask for assistance.

Treatment success from the specialty clinic is now destroyed, instead she faces danger

Elvira was treated at one of the world’s best environmental clinics, the Environmental Health Center in Dallas. Her physical health was stabilized and hope returned to her family. Her case was in the media for some time.

This young woman who is disabled with severe reactions by small traces of perfume has already broken down several times due to highly toxic pesticides that are being applied by the officials outside of her home. These pesticides are particularly dangerous for her because they disable a specific detoxification enzyme and the body then poisons itself.

At the moment Elvira is brought to the sea every day. It is difficult for her because she has severe sensitivity to light among other things. She gets spasms, has immune damage, and suffers from fibromyalgia. She spends the whole day on the beach, not enjoying the sand and the water, but instead staying still in a “bed” due to her bad health. There is no other solution. It is the only way to protect her from being exposed to dangerous toxins. Unfortunately there are no emergency headquarters in Spain for the chemically sensitive or in any other countries for that matter.

Young women in danger

Eliva’s parents have designed her a safe “bubble” where her living space is free of harmful substances, so that this 35 year old woman can normally cope and get along well. She has a sauna there for detoxification so Eliva has a safe haven to live in. She had a safe oasis, but that was before. Now toxic pesticides are sprayed a few yards from the house and the trees are fogged from top to bottom.

The family has informed the authorities of the danger of this pesticide spraying for the young woman. They requested notification of this spraying beforehand. Many don’t understand that these sprays used can penetrate through sealed windows and doors of apartments. These types of pesticides remain active for a long time and they can release gases for several days or weeks.

Not only are those who are chemically sensitive are threatened by these pesticides, but everyone who lives in the environment, especially babies and children whose immune systems and detoxification systems are not fully developed. The main objective of this class of pesticide is to attack the nervous system, but they can also damage the immune system as in the case of chlorpyrifos, which is one type which is known to cause multiple chemical sensitivity.

Petition in support of Elvira Roda

In order to stop this spraying of pesticides, Elvira, and the family have written a petition to the City Council. Anyone can also sign this petition and make a comment. It is important that Elvira receives international assistance. Please post on Facebook, in newsgroups, and on Twitter to help the family spread the news.

Petition for Elvira Roda: http://www.gopetition.com/online/37492.html

You can sign and comment here:

http://www.gopetition.com/online/37492/sign.html

Give Elvira support, strength and hope

Details regarding Elvira’s situation are on the Website Elvira Roda There you can see what her family has built for her. It would be wonderful to write Elvira and her family to give them courage to move forward in any language. English and Spanish are preferred if possible, but your own language can be translated by computer. Anyone who suffers from MCS can relate to the incredible pain Elvira must be dealing with now.

Since Elvira also suffers from electrical sensitivity, she cannot answer herself, but gets all her letters read aloud. Elvira is trying to maintain contact through her website. She writes by hand on paper, and the family and friends help to refresh the page. It can sometimes take a while to get online information, because of the intensive care for the young woman.

All the best for Elvira!

We wish you much strength and hopefully Elvira will assist in the quick understanding on the part of the City Council to move on to non-toxic pest control methods that would benefit of all inhabitants of the Spanish city.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, 11 July 2010

Translation: Christi Howarth for CSN

• German Original
• Japanese Translation

Please feel free to add this article to your website or blog. Thank you!

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More articles about Chemical Sensitivity:

• Spanish Workgroup met with Ministry of Health to create a MCS Consensus Document
• Join the project “Multiple Chemical Sensitivity uncovered” / Lola Vicente
• New Housing Non-Profit Forming with Focus on Environmental Sensitivities
• MCS in Japan: A lecture at the House of Representatives of Japan
• The naked Truth about MCS – Multiple Chemical Sensitivity – Including Foreword about German Situation