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.

-

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!

-

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

Dr. Martin Pall’s theory about MCS confirmed

FOR IMMEDIATE RELEASE

Portland, OR – July 5, 2010 – The physiological mechanism for Multiple Chemical Sensitivity proposed by biochemist Martin L. Pall has been confirmed with the recent findings of an independent research group in Rome.

Multiple chemical sensitivity (MCS), also known as chemical sensitivity and toxicant-induced loss of tolerance (TILT), is a disease initiated by toxic chemical exposure, leading to toxic brain injury that produces high level sensitivity to the same set of chemicals that are implicated in initiation of the disease. Sensitivity responses in other areas of the body are also often seen.

“Epidemiological studies show that MCS is a stunningly common disease, even more common than diabetes,” said Pall, professor emeritus of biochemistry and basic medical sciences at Washington State University. “My review of the literature and other research I’ve conducted over the past eleven years shows the probable central mechanism of MCS is a biochemical vicious mechanism, known as the NO/ONOO- cycle.”

Pall’s work is widely published in books and articles, the most recent of which is a chapter in the authoritative international reference manual for professional toxicologists, General and Applied Toxicology, 3rd Edition, 2009.

The NO/ONOO- cycle

The NO/ONOO- cycle, pronounced no-oh-no, is named for the chemical structures of nitric oxide (NO) and peroxynitrite (ONOO-). This biochemical vicious cycle mechanism predicts that each of the elements linked together in the cycle are elevated in patients suffering from MCS and related diseases. Most of the elements of the cycle have been shown to be elevated in such related diseases as chronic fatigue syndrome and fibromyalgia and also in animal models of MCS. However, several cycle elements have never been measured in MCS patients.

The recent study conducted by the research group in Rome is significant in regard to the NO/ONOO- cycle theory because it shows that three elements of the cycle are elevated in MCS patients (De Luca et al, Toxicology and Applied Pharmacology, 2010, April 27 Epub ahead of print). Those elements are the inflammatory cytokines, nitric oxide, and oxidative stress. Each of these measurements provides important confirmation of the disease mechanism proposed by Pall.

The inflammatory cytokines and nitric oxide elevation have never before been measured in MCS patients, although they have been shown to be elevated in animal models of MCS. Oxidative stress has been reported in two earlier studies of MCS patients, but the data provided in the De Luca et al study are much more extensive than are the earlier data. Consequently, these new data all provide important confirmation of the NO/ONOO- cycle as the central disease mechanism in MCS.

The NO/ONOO- cycle also is useful in understanding the role of toxic chemicals in MCS and the role of treatment. Each of the seven classes of chemicals implicated in MCS are thought to act indirectly to increase the activity of the NMDA receptors, which are glutamate receptors for controlling synaptic plasticity and memory function. This activity, in turn, leads to rapid increases in intracellular calcium (Ca2+), nitric oxide and peroxynitrite (ONOO-), acting to greatly stimulate the NO/ONOO- cycle.

“Many of the agents used by environmental medicine physicians to treat MCS patients can be viewed as lowering different parts of the cycle, and thus are validated in part by this mechanism,” Pall said. “Consequently, the NO/ONOO- cycle mechanism can be viewed as validating therapeutic approaches used in environmental medicine in the U.S., in Germany and some other areas of Europe and in some other countries.”

Contact:

Martin L. Pall, PhD

Professor Emeritus of Biochemistry and Basic Medical Sciences

Washington State University

(1*) 503-232-3883

martin_pall@wsu.edu

Main web site: www.thetenthparadigm.org

German Website: www.martinpall.info

Related Articles:

• MCS – Multiple Chemical Sensitivity, a disease caused by toxic chemical exposure
• Martin Pall about genetic evidence and Multiple Chemical Sensitivity
• Chemical Sensitivity – MCS and a number of medical conditons respond positively to Sauna Therapy
• MCS-Multiple Chemical Sensitivity at “General and applied Toxicology 3rd Edition”

People must be protected from exposure to fragrance ingredients that may cause cancer or fetal, hormonal or reproductive toxicity, the Cancer Prevention Coalition warned today. But federal agencies are not regulating these ingredients, leaving the public at risk due to the “recklessly irresponsible” behavior of the fragrance industry, says CPC Chairman Samuel S. Epstein, M.D.

Protection of the public would be implemented by passage of Senator Frank Lautenberg’s Safe Chemicals Act of 2010, Dr. Epstein advises. This bill requires manufacturers to provide information on “chemicals of concern” in consumer products.

The bill would provide the public with information on the dangers of these products, especially, says Dr. Epstein, “as the U.S. Food and Drug Administration (FDA) has recklessly failed to do so since passage of the 1938 Federal Food, Drug, and Cosmetic Act.”

Perfumes and fragrances are the single largest category of cosmetic and personal care products, especially products used on the hair, face, and eyes. These products represent nearly 50 percent of all prestige beauty dollars now spent in the United States. Fragrances are also extensively used in a wide range of everyday household cleaning products.

Exposure to toxic ingredients in cosmetics and personal care products is predominantly through the skin. In contrast, exposure to toxic ingredients in household cleaning products is predominantly through inhalation.

The FDA has direct authority under the terms of the 1938 Federal Food Drug and Cosmetic Act to regulate toxic ingredients in cosmetics and personal care products. However, seven decades later, it has still failed to do so. Similarly, the U.S. Environmental Protection Agency has also still failed to regulate these toxic ingredients in household cleaning products.

“In the disturbing absence of any federal regulations,” Dr. Epstein says, the policies and practices of the cosmetics and personal care products industries are determined by its International Fragrance Association (IFRA). This is an international trade organization of over 100 perfume and fragrance manufacturers, representing fifteen regions including the U.S., Europe, South America, Australia, and the Far East.”

The primary objective of IFRA is to protect the self-regulatory practices and policies of the industry by the development of a Code of Practices and safety guidelines, Dr. Epstein says. However, these include maintaining the “trade secret” status of perfume and fragrance ingredients, and pre-empting international legislative labeling and safety initiatives.

Of the more than 5,000 ingredients used in the fragrance industry, approximately 1,300 have so far been evaluated by the industry’s International Research Institute for Fragrance Materials. This institute is a “non-profit” organization, created by IFRA in 1966 to conduct research and testing of fragrance ingredients.

“However,” Dr. Epstein warns, “this testing is minimal and restricted to local effects on human skin, and short-term toxicity tests in rodents.”

Evaluation of ingredient safety is then made by a board of toxicologists, pharmacologists, and dermatologists, identified by the institute as “independent” without disclosure of their qualifications, let alone conflicts of interest.

Their findings are presented to IFRA’s Scientific Advisory Board, and then published in its trade journal, Food and Chemical Toxicology. The information reported in this journal is the basis on which IFRA formulates its own “safety guidelines.” However, Dr. Epstein points out, due to the “trade secret” status of fragrances, manufacturers are still not required by the FDA to disclose their ingredients on product labels or in any other way.

“These ingredients include a wide range of allergens. They also include synthetic musks, particularly tonalide and galaxolide, designed to mimic natural scents derived from musk deer and ox,” Dr. Epstein explains. “They are persistent and bioaccumulate in the body, have toxic hormonal effects, and have been identified in breast milk.”

In 1973, in efforts at damage control, IFRA created a Code of Practice listing prohibited ingredients, based on its own safety analyses. This listing has been periodically updated.

In May 1999, in response to repeated complaints of respiratory, neurological, and other toxic effects following the use of Calvin Klein’s Eternity perfume, the Environmental Health Network of California hired two testing laboratories to identify the ingredients in the perfume.

Analysis of these results by the Cancer Prevention Coalition, summarized in Dr. Epstein’s 2009 book Toxic Beauty, reveal the following:

• 26 ingredients whose “Toxicological properties have not been investigated,” or “toxicology properties have not been thoroughly investigated.”
• 25 ingredients that are “Irritants.”
• 5 ingredients that are “Skin sensitizers,” or allergens.
• 3 ingredients that show “Fetal, hormonal, and reproductive toxicity.”
• 2 ingredients that “May cause cancer.”

In efforts at damage control, IFRA agreed that information on allergenic ingredients in perfumes like Eternity should be made available, but only on request from dermatologists, for diagnostic purposes. “This “Fragrance On-Call List” action denies the public its right to know,” Dr. Epstein warns.

More disturbingly, Dr. Matthias Vey, president of IFRA, failed to respond to repeated warnings from August to October 2003 from the Cancer Prevention Coalition. These urged “all fragrance products be labeled to the effect that, apart from the absence of known skin and respiratory allergens, they contain no known carcinogens, gene damaging, hormonal, or otherwise toxic ingredients.”

As reported in “What’s That Smell,” a June 2010 report by Women’s Voices of the Earth, faced with continuing criticism of unresponsiveness, IFRA initiated a “compliance program” in 2007. “However,” Dr. Epstein warns, “this is based on testing of a mere 50 fragranced products from the global market place to detect prohibited ingredients.”

A fragrance may be restricted by IFRA on a variety of grounds. These include: use in products at higher-than-recommended concentrations, sensitization, photosensitization, phototoxicity, allergenicity, neurotoxicity, carcinogenicity, undefined biological effects, and inadequate data.

“This restriction, though, works better in theory than in practice,” Dr. Epstein emphasizes. “There is no pre-approval process for ingredient safety other than that claimed by the Research Institute for Fragrance Materials.”

Literature: Cancer Prevention Coalition, Reckless Self-Interest Of The Fragrance Industry, CHICAGO, IL, June 28, 2010

Related Articles:

• Secret Chemicals revealed in Celebrity Perfumes, Teen Body Sprays
• Household detergents, Shampoos may harmful substance in wastewater
• Phthalate Concentrations and Use of Personal Care Products among Pregnant Women
• Open Letter: Perfumed Stamps constrain People with Disabilities

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