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.

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?

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

Following the World Trade Center (WTC) collapse on September 11, 2001, more than 40,000 people were exposed to a complex mixture of inhalable nanoparticles and toxic chemicals. While many developed chronic respiratory symptoms, to what degree olfaction was compromised is unclear. A previous WTC Medical Monitoring and Treatment Program study found that olfactory and nasal trigeminal thresholds were altered by the toxic exposure, but not scores on a 20-odor smell identification test.

To employ a well-validated 40-item smell identification test to definitively establish whether the ability to identify odors is compromised in a cohort of WTC-exposed individuals and, if so, whether the degree of compromise is associated with self-reported severity of rhinitic symptoms.

The University of Pennsylvania Smell Identification Test (UPSIT) was administered to 99 WTC-exposed persons and 99 matched normal controls. The Sino-Nasal Outcomes Test (SNOT-20) was administered to the 99 WTC-exposed persons and compared to the UPSIT scores.

The mean (SD) UPSIT scores were lower in the WTC-exposed group than in age-, sex-, and smoking history-matched controls [respective scores: 30.05 (5.08) vs 35.94 (3.76); p = 0.003], an effect present in a subgroup of 19 subjects additionally matched on occupation (p < 0.001). Fifteen percent of the exposed subjects had severe microsmia, but only 3% anosmia. SNOT-20 scores were unrelated to UPSIT scores (r = 0.20; p = 0.11).

Exposure to WTC air pollution was associated with a decrement in the ability to identify odors, implying that such exposure had a greater influence on smell function than previously realized.

Literature:

Altman KW, Desai SC, Moline J, de la Hoz RE, Herbert R, Gannon PJ, Doty RL.,Mount Sinai School of Medicine, Odor identification ability and self-reported upper respiratory symptoms in workers at the post-9/11 World Trade Center site, Int Arch Occup Environ Health. 2010 Jun 30.