Patients don’t have to suffer any longer after being given incorrect diagnoses

Policyholders of America (POA) released a consensus statement written by treating physicians and researchers in the field on the mechanism and treatment of illness found in people sickened by exposure to water-damaged buildings. This illness has been the subject of heated debate that has resulted in harsh allegations being lobbed at patients by experts hired by industry to cast doubt on the legitimacy of the illness. Today however, so-called “Sick Building Syndrome” is now unveiled to be very real; it’s a chronic inflammatory illness that is easily identified with available lab testing and treatable using FDA-approved medications. The research paper is the first in the field written by physicians with experience treating the illness. Thorough and rigorous, the paper references governmental agency opinions, current published literature and an extensive review of patient data that has made this subject a political and legal hot potato obstructing patient care.

Nearly six months ago, a distinguished and credentialed panel of medical doctors and researchers, all from outside of POA’s membership, were assembled and charged with developing a consensus statement on the diagnosis and treatment of a growing public health problem across America: illness acquired from water-damaged buildings. The consensus statement was then peer-reviewed by other medical doctors and researchers. The research paper is being released to help physicians and their patients understand the mechanisms, symptoms, diagnosis and treatment protocols available for sickened patients.

After reviewing hundreds of peer reviewed studies, analyzing hard data from research conducted on thousands of patients, and incorporating published results of treatment of thousands of patients, the authors embarked on this massive assignment with eyes wide open — knowing that if the resulting research did not lessen liability of the powerful stakeholders involved, industry would likely attempt to discredit the findings.

With the research now concluded, the mysterious illness now has a name: Chronic Inflammatory Response Syndrome or “CIRS”, and when the cause of the illness can be directly linked to a water-damaged building, or (“WDB”), it is called “CIRS-WDB”.

Says Co-Author, Ritchie Shoemaker, MD, of Pocomoke, Maryland, “This statement builds consensus by debunking false ideas about illness from water-damaged buildings and establishes the basis by which practicing physicians can assess the complex illnesses these patients experience. We don’t have to guess what might be wrong when we have the labs to prove what is abnormal. Patients don’t have to suffer any longer after being given incorrect diagnoses such as allergy, stress or depression.”

Co-authors included Laura Mark MD from Williamsburg, Virginia; Scott McMahon MD from Roswell, New Mexico; Jack Thrasher PhD of Oakland, California and Carl Grimes HHS, CIEC, President of the Indoor Air Quality Association, from Denver, Colorado.

The 161-page research paper can be found, in its entirety, at:

CIRS Peer Reviewed Paper

A layperson’s summary of the research paper follows:

• CIRS-WDB is a multisystem, multi-symptom illness acquired following exposure to the interior environment of WDB. It exists as a recognizable syndrome that is identifiable and treatable;
• CIRS-WDB is identified as immunologic in origin, with differential inflammatory responses seen according to (i) genetic susceptibility and (ii) unique aspects of host innate immune responses.
• CIRS-WDB consistently involves loss of normal control of inflammation and the resulting “inflammation gone wild.”
• Treatment of human illness that is acquired following exposure to the interior environment of WDB involves a series of steps, each correcting the physiologic problems one by one.
• CIRS-WDB can be readily identified by current methods of clinical diagnoses. This process of diagnosis is supported by (i) identification of unique subsets (“clusters”) of symptoms found in epidemiologic cohorts of affected patients; (ii) identification of unique groupings of biomarkers, such as genetic markers, neuropeptides, inflammatory markers, and autoimmune findings.
• Patients with CIRS-WDB are often given incorrect diagnoses such as depression, stress, allergy, fibromyalgia, Post Traumatic Stress
• Disorder, and somatization. Those conditions, when actually present, will not improve with therapies employed in CIRS-WDB.
• CIRS-WDB is acquired primarily from inhalation of microbial products that are contaminants found in the complex mixture of WDB.
• Re-exposure of previously affected patients will bring about immunological host responses that are enhanced in their rapidity of onset and magnitude, such that these patients are “sicker, quicker.”

Melinda Ballard, POA’s president said, “About 25% of our members have experienced health effects after exposure to toxigenic mold and other organisms in their homes and of those, the vast majority put on the treatment protocol outlined in this paper have reported back to us that their symptoms have either subsided or vanished altogether. While our experience with these members is purely anecdotal, this research paper is not; the findings are irrefutable. Most importantly, the rigorous science in the paper offers hope to so many who are in desperate need of an effective and inexpensive treatment.

POA is a nonprofit educational organization that, at no charge, helps policyholders receive adequate payment when a property insurance claim is filed. Since it was founded in 2001, more than 2.5 million people have joined, an unfortunate reflection on the manner in which claims are often handled by insurance companies. Its web address is: www.policyholdersofamerica.org. POA is a member of ACHEMMIC (the Action Committee on the Health Effects of Mold, Microbes and Indoor Contaminants), a group of scientists, researchers, physicians, indoor air quality experts, environmental engineers, industrial hygienists, structural engineers, teachers and advocates working to advance the understanding of the health effects of mold, microbes and indoor contaminants. ACHEMMIC’s website is www.achemmic.com.

Reference:

Policyholders of America, Research Shows Controversial Illness is Real and Treatable, CHARLESTON, S.C., July 27, 2010.

Related Articles:

• Sick Building Syndrome – SBS – in relation to domestic exposure
• Successful treatment of patients with mycotoxin induced disease
• A longitudinal study of environmental risk factors for symptoms associated with sick building syndrome
• Patients with indoor exposure to molds compared to patients exposed to chemicals

Newborns of non-smoking moms exposed to secondhand smoke during pregnancy have genetic mutations that may affect long-term health, according to a University of Pittsburgh Graduate School of Public Health study published online in the Open Pediatric Medicine Journal. The abnormalities, which were indistinguishable from those found in newborns of mothers who were active smokers, may affect survival, birth weight and lifelong susceptibility to diseases like cancer.

The study confirms previous research in which study author Stephen G. Grant, Ph.D., associate professor of environmental and occupational health at Pitt’s Graduate School of Public Health, discovered evidence of abnormalities in the HPRT gene located on the X chromosome in cord blood from newborns of non-smokers exposed to environmental tobacco smoke.

In the current study, Dr. Grant confirmed smoke-induced mutation in another gene called glycophorin A, or GPA, that is representative of oncogenes – genes that transform normal cells into cancer cells and cause solid tumors. The GPA mutation was the same level and type in newborns of mothers who were active smokers and of non-smoking mothers exposed to tobacco smoke. Likewise, the mutations were discernable in newborns of women who had stopped smoking during their pregnancies, but who did not actively avoid secondhand smoke.

“These findings back up our previous conclusion that passive, or secondary, smoke causes permanent genetic damage in newborns that is very similar to the damage caused by active smoking,” said Dr. Grant. “By using a different assay, we were able to pick up a completely distinct yet equally important type of genetic mutation that is likely to persist throughout a child’s lifetime. Pregnant women should not only stop smoking, but be aware of their exposure to tobacco smoke from other family members, work and social situations.”

Literature: University of Pittsburgh Schools of the Health Sciences, Exposure to secondhand smoke in the womb has lifelong impact, June 30, 2010

Related Environmental Medicine Matters Articles:

• Secondhand Smoke Exposure and Depressive Symptoms
• Second Hand Smioking results in Liver Disease, UCLA Study finds
• Male Reproductive Organs are at Risk from Environmental Hazards
• Majority of US hospitals will have smoke-free campuses by end of year
• 2009 edition of the Tobacco Atlas catalogues catastrophic toll of tobacco worldwide

Berkeley — Pregnant women with higher blood levels of a common flame retardant had altered thyroid hormone levels, a result that could have implications for fetal health, according to a new study led by researchers at the University of California, Berkeley.

“This is the first study with a sufficient sample size to evaluate the association between PBDE flame retardants and thyroid function in pregnant women,” said the study’s lead author, Jonathan Chevrier, a UC Berkeley researcher in epidemiology and in environmental health sciences. “Normal maternal thyroid hormone levels are essential for normal fetal growth and brain development, so our findings could have significant public health implications. These results suggest that a closer examination between PBDEs and these outcomes is needed.”

PBDEs, or polybrominated diphenyl ethers, are a class of organobromine compounds found in common household items such as carpets, textiles, foam furnishings, electronics and plastics. U.S. fire safety standards implemented in the 1970s led to increased use of PBDEs, which can leach out into the environment and accumulate in human fat cells.

Studies suggest that PBDEs can be found in the blood of up to 97 percent of U.S. residents, and at levels 20 times higher than those of people in Europe. Because of California’s flammability laws, residents in this state have some of the highest exposures to PBDEs in the world.

“Despite the prevalence of these flame retardants, there are few studies that have examined their impact on human health,” said the study’s principal investigator, Brenda Eskenazi, UC Berkeley professor of epidemiology and of maternal and child health. “Our results suggest that exposure to PBDE flame retardants may have unanticipated human health risks.”

The new study, to be published June 21 in the journal Environmental Health Perspectives, is the second study to come out this year from Eskenazi’s research group linking PBDEs to human health effects. Eskenazi was the principal investigator on the earlier study that found that women with higher exposures to flame retardants took longer to get pregnant.

In the new study, the researchers analyzed blood samples from 270 women taken around the end of their second trimester of pregnancy. The women in the study were part of a larger longitudinal study from the Center for the Health Assessment of Mothers and Children of Salinas (CHAMACOS) that examines environmental exposures and reproductive health.

The researchers measured concentrations of 10 PBDE chemicals, two types of thyroxine (T4) and thyroid-stimulating hormone (TSH). They controlled for such factors as maternal smoking, alcohol and drug use, and exposure to lead and pesticides.

Analysis focused on the five PBDE chemicals that were detected most frequently and are components of a mixture called pentaBDE. The researchers found that a 10-fold increase in each of the PBDE chemicals was associated with decreases in TSH ranging from 10.9 percent to 18.7 percent. When the five PBDEs were analyzed together, a tenfold increase was linked to a 16.8 percent decrease in TSH.

The study did not find a statistically significant effect of PBDE concentrations on levels of T4. With one exception, all the women in the study with low TSH levels had normal free T4 levels, which corresponds to the definition of subclinical hyperthyroidism. The study found that odds of subclinical hyperthyroidism were increased 1.9 times for each tenfold increase in PBDE concentrations.

“Low TSH and normal T4 levels are an indication of subclinical hyperthyroidism, which is often the first step leading toward clinical hyperthyroidism,” said Chevrier. “Though the health effect of subclinical hyperthyroidism during pregnancy is not well understood, maternal clinical hyperthyroidism is linked to altered fetal neurodevelopment, increased risk of miscarriage, premature birth and intrauterine growth retardation.”

Exactly how flame retardants influence TSH levels is unclear, the researchers said, but animal studies have shown that certain PBDEs can mimic thyroid hormones.

In addition to the commercial mixture pentaBDE, octaBDE and decaBDE have been developed for use as commercial flame retardants. PentaBDE and octaBDE have both been banned for use by the Stockholm Convention on Persistent Organic Pollutants, the European Union and eight U.S. states, including California, but they are still present in products made before 2004.

The production of decaBDE by major manufacturers is scheduled to be phased out in the United States by 2013. However, pentaBDE and decaBDE are being replaced by new brominated and chlorinated compounds whose impact on human health is not yet clear, the researchers noted.

Literature: University of California – Berkeley, Flame retardant linked to altered thyroid hormone levels during pregnancy, June, 21, 2010.

First Perfume and Fragrance- free Asthma Conference

The American Environmental Protection Agency is holding a large asthma conference from June 17-19, 2010, in Washington D.C.. For the first time ever, the EPA has a special conference feature which is to renounce fragrances and perfume. Thus, the EPA is sending a signal to indicate the fragrance issue and to provide participants with asthma, the possibility to participate at the 2010 National Asthma Forum. Fragrances are among the principle factors for asthma attacks.

Nearly 300 experts and leaders, whose work is to improve the living conditions of people with asthma, are taking part in this event. Primary decision makers of federal and state authorities, as well as those responsible for guidelines, managers of health authorities, scientists, physicians and leaders of self-help organizations are included in this group. Their goal is to design environments to assist in safe living for all asthmatics.

In order to allow all participants to take part in the conference, meaning a conference free of perfume, aftershave, hairspray, body lotion, fabric softener or scented deodorants, the federal agency sent out the following reminder online:

“Asthma-friendly environments are our business – Please help us to make this a fragrance-free event by using fragrance-free personal care products and avoid perfumes and other irritants.”

This is a very positive step by the EPA. They have removed the largest known barrier for asthmatics and chemically injured people this year for the 2010 National Asthma Forum. World leaders on every continent should incorporate this humanitarian example by the EPA , for those disabled with illnesses affecting the breathing and lung function throughout the world.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, 17 June 2010

Translation: Thank’s to Christi Howarth

Related Articles:

• Secret Chemicals revealed in Celebrity Perfumes, Teen Body Spray
• Open Letter: Perfumed Stamps constrain people with disability
• Professor urges us to take people with Chemical Sensibility into Account

The author, Ryozo Tamakoshi is a member of the Japanese organization CACP – Citizens Against Chemicals Pollution.

On February 22, 2010, a conference called “The 1st Meeting for Learning Chemical Policies for Enacting a Basic Chemical Law” was held in the House of Representatives in Tokyo. In view of his chemical and electromagnetic sensitivities, Ryozo Tamakoshi gave a lecture on MCS. This was a matter of particular concern for him, as his health troubles were caused by chemical exposure. The conference focused on the topic ‘Security of Chemicals’ and the need to create a new policy for more careful handling of chemicals – important basic principles for all the Japanese people who have to live with MCS.

Talk of Ryozo Tamakoshi / Citizens Against Chemicals Pollution

As a patient with multiple chemical sensitivity, I must share with you some important things.

I have multiple chemical sensitivity and electromagnetic sensitivity. The onset of multiple chemical sensitivity begins differently among individuals as do the corresponding symptoms. In my case, I gradually became chemically sensitive. I think my symptoms are relatively mild compared to others with this condition. Some patients are seriously compromised and can hardly leave their homes to participate in a meeting like this one. I have some risks going out in public, but think it my duty as one who can actually attend a meeting like this one, to enlighten others regarding this condition called multiple chemical sensitivity or MCS. Therefore, I would like to express my gratitude for your allowing me the opportunity to speak to you today. Thank you. I would like to discuss seven points. As you listen, please consider that my findings are based on personal experiences.

1. One cause of multiple chemical sensitivity is the toxic effect of extremely low levels of chemical substances.

On October 1, 2009 in Japan, the Medical Information System Development Center (MEDIS-DC) – a subsidiary organization of the Ministry of Health, Labor and Welfare (MHLW) – registered “multiple chemical sensitivity” as “ICD-10 Japanese standard disease master”. Multiple chemical sensitivity was classified in Japan into ICD-10 code T65.9 – “Toxic effect of unspecified substance, Poisoning NOS”.

Please look at the following material (1)(2).

From these references, it is well understood that multiple chemical sensitivity is classified into “Toxic effect of substance”

(1) T65.9 ICD-10 WHO

Chapter XIX: Injury, poisoning and certain other consequences of external causes (S00-T98)

T51-T65: Toxic effects of substances chiefly non-medicinal as to source

T65 Toxic effect of other and unspecified substances

T65.9: Toxic effect of unspecified substance Poisoning NOS

(2) The Japanese name of diseases classified into “ICD10 code T65.9″

The Japanese name of diseases

1. multiple chemical sensitivity
2. systemic poisoning
3. poisoning
4. accidental poison ingestion
5. attempted suicide by taking poison

In Japan, it is clearly thought that the cause of multiple chemical sensitivity is a “Toxic effect of chemical substances” . And frankly speaking, this means that if there were no chemicals which had toxic effects, people wouldn’t become chemically sensitive.

As you can see, I cannot live without a double gas mask now. (VOC mask and activated carbon mask) Especially in winter, I cannot take this mask off even when I sleep at night because the heating machine in the nearby greenhouse operates at night and gases are released. The manufacturer of the heating machine writes in the catalog on the internet as follows, “Flue gases are extremely harmful to human health and crops. Please be sure to release them outdoors”. Why is it allowed to release such harmful gases outdoors?

My biggest fear in winter has been these gases. When the gases are released, suddenly I smell burning, start coughing, phlegm occurs, and my eyes become painful. Furthermore, my mouth becomes bitter, I have tongue numbness, and I feel poisoning (discomfort) of the internal organs, especially to the digestive organs. Then, I have strong fatigue throughout my body so I lie on the floor and sleep eventually.

I cannot prevent the bad influence of these gases now, even if I have on a gas mask and use air purifiers in my home. When my house is in the upwind side of the greenhouse, I am relatively safe. But when I am downwind, I am always pushed into the hell. To avoid these gases, I often sleep in my car, away from my house, or sometimes in a rice field or on a mountain. This is just one example of the difficulties I face with multiple chemical sensitivity.

For me, the current world, no matter where I live and go, is a toxic or poisonous world. The toxicity of substances at the level of ppm and ppb has a big influence on my health. My daily health disorders due to the exposure of many harmful chemicals cannot be simply explained by an allergic reaction any longer. The doctors who examined my symptoms only from the perspective of immune disorder failed to make proper diagnosis of my symptoms.

I think that it is impossible to understand the essence of multiple chemical sensitivity without focusing on the complexity of many chemical toxicities and patients’ symptoms.

I do not use the word “poison” (toxic effect) emotionally. I only use the word “poison” (toxic effect) to explain daily, normal phenomena, because I cannot live without a gas mask.

2. The reality of multiple chemical sensitivity is the result of complex toxic effects of many chemicals and it is spreading out all over the world.

Modern society is full of so many chemicals. Life without chemicals is no longer a possibility. Of course there exist many chemicals with toxic effects. We are living with the complex pollution of them. New chemicals have been produced one after another without enough consideration of the influence of chemicals on ecosystems and without confirming whether those are safe for human beings and creatures. Thus, the “toxic world” has been spread globally.

I have been in contact, via the internet, with international patients who have multiple chemical sensitivity and environmental illness. I have come across sorrowful cries of patients, warm words of empathy to comfort one another, and powerful protests and demands against our “toxic world”. Moreover, I’ve received a lot of essential information about MCS and environmental illness which is reported on the internet to the entire world. Complex chemical pollution has now spread out all over the world.

3. Multiple chemical sensitivity cannot be separated from other developmental and chronic multisystem illnesses caused by the environment.

Multiple chemical sensitivity cannot be separated from other environmental illnesses such as sick building syndrome, allergic diseases and electromagnetic hypersensitivity. We must not only focus on the chemical pollutants, but must also look at other environmental factors such as biological infectious agents and electromagnetic fields. Many patients with MCS also have allergic diseases and electromagnetic hypersensitivity. This condition is a complex one.

Consider expanding your perspective on developmental disorders. In Japan, developmental disorders mean a pervasive developmental disorder, high-functioning autism, Asperger syndrome, a learning disorder (dyslexia) or attention deficit hyperactivity disorder (ADHD), etc. Currently, there are a lot of research papers detailing that environmental factors (chemicals) may cause the appearance of those developmental disorders. The increasing number of these reports is more and more available.

I have been supporting two children with developmental disorders at home while considering chemical pollution as the cause of these types of disorders. People around them don’t understand them, which gives the children worries and suffering. Their situation seems to be similar to ours. Supporting their study is my pleasure.

4. Some common effects can be seen in MCS, but each person has different symptoms. Therefore, there are various difficulties and disabilities due to MCS. Comprehensive supports are needed for the various difficulties and disabilities.

I think it very important to understand the individual symptoms in connection with various difficulties and disabilities in life. I strongly wish industrial accident authorization and disability authorization would reflect precisely the situation of the patient and be performed promptly. It is positive that industrial accident authorization and disability authorization of MCS have been actually recognized in Japan. However, the form of documents for disability authorization is partly inappropriate, so the paperwork can’t be filled out precisely. I think the forms and documents should be immediately edited and improved.

Guaranteed rights of medical care, welfare, labor, housing and pension corresponding to the state of every person are written in Japan’s Constitution.

5. To protect patient’s lives and health, to treat symptoms, and to recover health, should be top priority, in addition to avoiding exposure to toxic substances and ensuring safe and secure places to live.

For patients with MCS, the most important thing is to avoid exposure of toxic substances.

In particular, ensuring emergency evacuation of patients has become an urgent issue.

But it is very difficult to secure a safe place by one’s own effort. To reduce a heavy personal burden, some support by the authorities is absolutely necessary for the patient. In addition, it should be emphasized to make available all correct information about harmful chemicals to all citizens.

6. We have a serious problem. We are often attacked by the feeling of isolation, loneliness, anxiety, fear, and helplessness.

This is one of the most serious and important problems. MCS patients around the world, just like us, worry and suffer. Sadly, there are still some people who commit suicide in despair. When people around me, including my family, can’t understand my physical and mental state, I have a terrible feeling of loneliness.

Continuous bad health conditions, anxiety and fear of a sudden chemical attack, and isolation from participation in society, leaves me with a feeling of helplessness and despair. To break this ongoing cycle, mutual support among friends and society is needed. The social recognition and the social support are absolutely necessary.

When exposed to toxic chemicals, I get irritated, impatient and sometimes get in a bad mood. I cannot smile. Unfortunately, these behaviors are not viewed as a result of the individual’s chemical poisoning but instead a problem with the individual’s heart, which is not the case. In order to prevent the unfortunate misunderstandings like these, it is very important that we spread correct information regarding this condition and strive for the recognition of MCS. We must support those who are apt to have low self-esteem and affirm those with chemical sensitivity so they may live freely in peace, and participate in society with more pride.

7. The eight basic principles of “Basic Law on Chemicals Policy” that ChemiNet has proposed should be respected.

All the basic principles listed below are very important.

The many problems regarding multiple chemical sensitivity will be solved fundamentally in the process of policy formulation and implementation of the comprehensive chemicals on these basic principles:

1. Production and use of chemicals for a sustainable society (The reduction the amount of chemicals)
2. No Data, No Market principles
3. Consideration must be given to the people ( fetus / child) who are most vulnerable and also to the ecosystem
4. Lifecycle management must be initiated (From research and development to production, use, recycling and disposal
5. The precautionary principle must be respected
6. Alternative principle must be initiated
7. The participation of all people concerned. The collaboration principle must be implemented
8. International cooperation must occur

Author: Ryozo Tamakoshi

Thanks to Christi and Larry for reading correction.

Related Articles about MCS in different countries:

• 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