Evidence for the causes of environmental diseases have been around for a long time

The doctor and scientist Doris Rapp is one of those who not only practice environmental medicine, but has also made environmental medicine the most important thing in her life. The American spent two weeks in Germany. The reunion with Prof. Rapp was very productive and we were lucky enough to spend a beautiful day on the Moselle. Here is a small summary.

Researcher documented environmental disease

I met Prof. Rapp for the first time at a congress in Bad Emstal about 18 years ago. It was a crucial experience. In her presentation, she showed a video about a teacher who became ill from contaminated carpeting in the school. The teacher was filmed during a reaction to contaminated dust from the carpet. This video vividly conveys to the viewer what MCS is and what a reaction can look like. At that time I was at the very beginning of my own illness and had had similar reactions to certain pesticides. The teacher experienced convulsions and fell unconscious. I thought “my goodness, that’s me, that’s exactly like me, that’s what you have…“ After the lecture I spoke with Prof. Rapp and that was the beginning of an ongoing exchange of information and an interesting friendship. We met again at conferences in Germany, Holland and in the U.S., visited each other in Germany and the United States and exchanged e-mails. When I visited her in Scottsdale, she showed me one of her video archives. She had stored thousands of videos of children whom she had treated. They showed the patients during and after therapy and during testing of foods, mold, pollen, dust mites or chemicals. They displayed impressive evidence that can remove any last doubts as to the existence of environmental illnesses and allergies.

We can no longer ignore environmental illnesses

Dr. Binz and his wife invited the environmental doctor for this most recent visit to Germany. We had actually arranged to meet for a trip along the Moselle, which would start before lunch. We had a warm reunion and before we knew it we had already exchanged information and ideas and were in the midst of planning for future projects.

“I’m over 80 years old now and have no children, I don’t really need to be doing all this and I could be enjoying my peace at this age, but I see what’s going on, and I simply cannot remain silent. We have so many chemicals in our environment, in the food we eat, in the water we drink and the air that we are constantly breathing. They affect each of our body systems and we can no longer ignore this. Almost every second person in my country has cancer and that is just not acceptable”, says Doris Rapp.

“The politicians and the public must realize the impact the flood of chemicals has on us and no one should keep insisting that we do not know where all the increasing diseases that occur are coming from. The evidence is there. We have animal testing to prove it. That’s why, as a doctor, I ask: How much more has to happen before we admit to the real causes? I won’t accept hearing when one says, “Yes, but there’s nothing we can do about it.” Yes, there is, because you can educate yourself and there’s a hell of a lot you can do,” says Prof Rapp, who is enraged about the current situation.

Solutions are often very simple

Prof. Rapp is no one who can be at odds with the world and ignore the solutions. She is in the process of writing another book. “It will be a small book, only 30 pages. Every reader can easily understand how he/she can shape his environment in order to stay healthy. The tips in this book will not cost anyone a fortune, they can easily be implemented without major expense. It will help anyone who wants to change something and wants to improve his health. The doctor cites two examples:

“Many people react to foods, but are not sure towards which foods. Expensive tests are not necessary. I advise people to think about what they eat most, foods that they downright crave. Experience has shown that these are the foods that are eaten every day and most likely those which cause reactions. The solution: omit the suspected food for a week. You can test one food after another. This costs nothing! ”

“Some people live in a house that is contaminated with pollutants or contaminated by mold. My experience is that five out of seven people can improve their health by 70% if they obtain a high quality air cleaner that is capable of filtering hundreds of chemicals from the air in your home. Such a device may cost a bit, but I have often seen patients who got better over night. So it’s worth it if you are unable to directly move out of the apartment or house.”

The new book will be published this year, and Professor Rapp has authorized me to translate it into German. She also gave me permission to translate videos and other books into our language, contributing knowledge to allergy sufferers and chemically sensitive people in the German-speaking countries, helping them to find a way back into life.

A trip along the Moselle

During the drive to the historic Moselle wine village, Bernkastel, to Traben-Trabach and the drive back to Trier, Prof. Rapp was bursting with innovative ideas that we will begin to put into action in the next few months and they will benefit the environmentally ill in many ways.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, 12 September 2011

Related Articles:

• Scented laundry products emit hazardous chemicals through dryer vents
• Environmental diseases are not unexplained mysteries
• Damn, I do not accept that my life is over!
• School Integration for those with MCS possible

After much effort, the Agaplesion Diakonie Hospital in Hamburg, Germany has designed two rooms for people with MCS and multiple allergies. For many years, local support groups have worked tirelessly to try to integrate environmentally controlled hospital rooms in the hospital. For the first time ever, it is possible for people who suffer from environmental illnesses or severe allergies to be in a hospital for medical treatment which is tailored to their health issues.

Environmental rooms for MCS, the environmentally ill, and multiple allergic patients

Since February 2011, with the move into the newly built Agaplesion DIAKONIE Medical Center in Hamburg (formerly the hospitals, Old Oaks, and Bethany Elim), for the first time, a hospital has two special pollutant free rooms prepared for those with environmental allergies, and MCS patients. The special environmental rooms have been built with much care. They consist of a single and a double room. Both rooms are connected by a vestibule from the other station areas separated so that chemical-sensitive patients do not come in contact with the usual hospital chemicals and fragrances from other patients.

Medical treatment, surgery, obstetrics

The Agaplesion Clinic offers the two environmental rooms which have been specially prepared for the treatment of patients in the medical environment including the following hospital departments in the with an integrated spectrum:

• Internal Medicine
• Geriatrics (geriatric medicine)
• Diabetes
• Surgery, Hand Surgery, Plastic Surgery
• Gynecology, Obstetrics
• Orthopedics
• Anasthesia, Intensive Care

Criteria for inclusion in Environmental Room

There is a briefing which takes place through a doctor or the emergency room. During the first contact a message states that the patient wants a shot in the environmental room. The Agaplesion Clinic requires patients have medical evidence showing MCS (multiple chemical sensitivity), environmental allergies / intolerance (allergy multi-) and / or a present a chronic intoxication in the patient. A MCS and / or allergy passport is also useful to explain the need for inclusion in a special room environment.

Core Unit of the Environment Room

Rooms in conventional hospitals are not suitable for chemically sensitive patients. In general, the wards have PVC flooring and particleboard furniture. The environmental rooms in the Agaplesion Clinic have given much effort to create a plan that recognizes the needs of MCS sufferers with good air quality issues. The two environmental rooms were built with the low emission of air pollutants / safe building materials and furnishings, to ensure the safety for hypersensitive patients.

Some examples of the special features of the environmental room:

• Walls and ceilings with running Fermacell Green Line plates
• Massive exterior walls are lime
• Walls and ceilings painted with lime paint
• Rooms are equipped with a wall heater
• Floor is made of ceramic tiles.
• Window and door frames are insulated with hemp
• Doors are made of glass
• Exposure to electromagnetic fields has been reduced, including through the installation of power circuit breakers
• Furniture is made of enamel, metal, or stainless steel

The clinic staff shall ensure low-emission patient care:

• Attention is given to see if there are fragrance-containing and damaging products in patient vicinity.
• Patients are asked about their possible food intolerances to allergies, to drugs, disinfectants, medicines and anesthetics.
• A dietitian takes into account the patients’ food intolerances
• At the medical station information is summarized, and this can be viewed at any time by medical staff.
• The staff of the station is working together very closely with the support group „environmental illnesses MCS + CFS.”
• The room environment is cleaned with fragrance free detergents, but a disinfecting cleaning is essential to neutralize odors, so the patient is offered the use of effective microorganisms (EM 1).
• When necessary, patients may bring their own food which is kept in a refrigerator at the door. A kettle is also available there.
• The bedding of the entire hospital is fragrance-free but these patients are permitted to bring their own bedding.

Special measures for the benefit of environmental patients

• The use of fragrance-free and low-polluting products is offered to patients and their visitors
• The use of cell phones and smoking are not permitted in this area
• Living together requires all patients in the environmental room practice understanding, respect and helpfulness

Hospital life – side note

Important information for environmental patients and their physicians, that the Agaplesion Clinic is a hospital and not an environmental clinic. In a hospital procedures are regulated and special requests cannot be met. The Agaplesion Clinic breaks new ground by providing the two environmental rooms. The employees are trained on MCS and environmental illness, but they are dependent on cooperation between the patients, so that a smooth clinical work can be guaranteed. Perhaps at first patients won’t have the highest satisfaction, but patients should be understanding and possibly contribute constructive suggestions for improvement since this is the first attempt at providing environmentally safe rooms in a hospital. It is important for patients with chemical sensitivity (MCS) to realize that this is a new development at the clinic. For those with hyper-sensitivities, a stay at the hospital, despite careful selection of materials, initially may be fraught with problems because of outgassing and ecological matters.

The Chemically Sensitive are thankful for their commitment

The MCS support groups in Hamburg, which for years pursued the goal of a “MCS-friendly hospital room in a hospital” give hearty thanks and appreciation to the doctors, hospital planners, architects and government agencies that were involved in this project. All the best and much success for the safe environment in the new rooms at the Agaplesion Clinic!

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, 1 March 2011

Translation: Christi Howarth

Literature:

Agaplesion Diakonie Hospital Hamburg, newsletter: environmental rooms for MCS patients and the environment / multiple allergies, January 2011

Contact:

Agaplesion DIAKONIE Hospital Hamburg

Hohe Weide 17, 20259 Hamburg, Germany, Tel: (040) 7 90 20 – 0, Fax (040) 7 90 20 – 10 79, E-mail: info@dkh.de, Internet: www.dkh.de

Further CSN articles about MCS:

• Study could not confirm link between mental illness and chemical sensitivity
• Brain dysfunction in MCS – Multiple Chemical Sensitivity
• Research on Multiple Chemical Sensitivity (MCS)
• A politically inconvenient illness

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 simple blood test can now predict whether newborn babies are at high risk of developing allergies as they grow older, thanks to research involving the University of Adelaide.

Professor Tony Ferrante, an immunologist from SA Pathology and the Children’s Research Centre at the University of Adelaide, says the new marker may be the most significant breakthrough in allergy testing for some decades.

“A protein in the immune cells of newborns appears to hold the answer as to whether a baby will either be protected, or susceptible to the development of allergies later on,” Professor Ferrante says.

Amounts of the cell signalling protein, called protein kinase C zeta, are much lower in children at risk of allergies.

Professor Ferrante says the blood test is far more effective than previous indicators, such as a family’s clinical history, or measuring the allergy-inducing antibody IgE.

In collaboration with Professor Susan Prescott from the University of Western Australia and Princess Margaret Hospital for Children, Professor Ferrante’s research team has refined the new marker for allergy risk, originally discovered in 2007, but now modified to a simple and manageable blood test at birth.

The researchers are also looking at whether fish oil supplements given to both pregnant women and those who have just given birth can reduce the risks of the children developing allergies.

“There is evidence that the levels of this important protein increase with fish oil supplementation to protect against allergy development,” Professor Ferrante says.

Australia has one of the highest allergy rates in the world, with 40% of children now suffering from allergic diseases, including food allergies, eczema, asthma and hay fever. These conditions frequently persist into adulthood, placing a heavy burden on the healthcare system.

Literature: The University of Adelaide, New blood test for newborns to detect allergy risk, 21 May 2010

44 year old Geli H. from Essen (Ruhr region) suffers from severe MCS. For weeks she and her husband have been desperately seeking medical aid. He was allowed to take off from work to care for his wife. Geli’s food intolerance left her with only one food.  Everything else causes a dangerous closing of her throat. She’s hit by vertigo, a choking fit, severe headache, and gastric spasms. The Inside of her mouth looks like raw flesh. Even if she eats a tiny little bit, all of her body may turn red and she cannot breathe.  An air purifier runs all day and night. After a few sips of water, she collapses. Without competent help, she faces death.

Because of her reactions to chemicals, she should not leave the house. In her despair she tried to get help in a local clinic. At the entrance she was already exposed to disinfectant fumes, perfumes, scents from inside and cigarette smoke from patients smoking at the entry. The severe reactions of her body led her husband to bring her back home.

They asked several clinics all over Germany. The last spark of hope, a nearby anthroposophic clinic in Witten-Herdecke, was fully booked. Another declared it could not take responsibility for such cases. Doctors didn’t make things better. One environmental medicine doctor said he cannot help because there is no environmental clinic near her. Another recommended a hotline in Berlin that operates only twice a week. There seems to be no need for emergency help in Germany.

One doctor topped it all with the well known psychosomatic theory of MCS. He recommended a university hospital. Geli has pathological blood results and her immune system is down and this doctor recommends psychotherapy where she has to get used to substances which ruined her body. Is there no way to sue such doctors?

Geli is in grave danger. She might not survive a flight to the Environmental Health Center in Dallas. She quickly needs special hypoallergenic nutritional infusions. It takes only a licensed doctor sympathetic to environmental medicine for diagnosis. A willing general practitioner could apply the IV’s at her home.

If you read this in the UK, please remember Sophia who died in 2005 in a mental hospital because doctors refused to accept the organic nature of ME/CFS.

Is that the cure for all environmental disease cases?

Author: BrunO for CSN – Chemical Sensitivity Network, December 11, 2009

• German Article about Geli’s Case
• Japanese Translation of the article

German Article about Geli’s Case

The last few months of the life of Angelika S.

Six months ago Angelika S. was still doing fairly well. She lived with her family in a suburb of a German town. She loved animals and had a small animal hostel. She also cared deeply about other people.

I got to know her through my cousin who often visited her and mentioned four months ago that Angelika too had strange symptoms similar to my own. Suddenly, she didn’t tolerate fabric softeners – the shower gel of her family, the deodorants and a lot more now made her sick. My cousin told her about me and so we got in touch, first writing letters. She was looking for informational material about chemical sensitivity and I was sending it to her. About the same time I heard that she couldn’t tolerate the furniture and the flooring anymore and was sleeping on the kitchen floor on blankets. From now on everything went incredibly fast…

Nearly every day my cousin called me to report new intolerances. Because of the heat in August, she could only sleep outside on the patio on a kind of futon mat made from compatible materials. Then even this wasn’t possible anymore for her…

Calling an environmental doctor she was told, she would have to wait several weeks (vacation etc.). Then I could contact to her on the phone too. She was able to talk only five or seven minutes, because in addition now she had become electromagnetically sensitive.

Then I gave her the advice to drive to a nature area in her neighbourhood. She did so with her husband each morning between 7 and 8 o’clock. There she did much better. But it speeded up:  difficulty in breathing… heart palpitations …. decreased muscle tonus in the arms and legs …. pulmonary problems …. everything took a turn for the worse.

Since she couldn’t use the phone anymore, I talked to her husband instead. In September he brought her to an abandoned campsite of his club and they slept in the car…in small cars…she in her car and he in his car because his one was contaminated with chemicals from his work. During the daytime he had to drive 25 kilometres to his workplace and to leave her alone there. In the evening he was cooking the meals for her and brought them to her… again 25 kilometres … The nights in the car… bad for the joints.

Then her husband called the environmental doctor again and got the advice to arrange a clean room for her in their house. He should tile the room and keep her in it. So he removed the floor, tiled the room and painted the walls with safe chalk paint. Angelika still was at the campsite, alone during the daytime and it started to get colder…Two air purifiers where bought from PureNature, oxygen for the ride to her home… and then the attempt to bring her back to the new safe room. During the whole time her husband had to take time off from work which got more and more difficult. They had to worry that he would lose his job too.

When she was back at home, my cousin couldn’t come for a visit anymore. Also no one from the family could come to see her. When her son came, she had to escape, and had no contact to her beloved grandchild.

I have had Multiple Chemical Sensitivity for over ten years now, but I had the chance to grow into the situation and I know what isolation means. The soul suffers…tears come…sometimes depression…and when there is no or little hope and you do not really know what will happen to you…then everything is even worse.

But Angelika was learning fast and tried to avoid everything which made her sick; she ate organic food and changed everything.  But it takes time until all smells are out of a general household.

I supported her as much as I could by calming her down and providing her with information…Then the appointment with the environmental doctor came…He said that she has full blown Multiple Chemical Sensitivity and suggested a therapy only of B12 shots for six weeks daily with added B1 and B6. She started his therapy, but everything got worse.

Angelika had reached the end stage of Multiple Chemical Sensitivity in only six months.

When she still wasn’t doing so badly – that was in September this year – I had offered her a invitation to come to my place and try it here, but she wanted to try first the tiled room at home.

Last Saturday her husband called me to tell me that they had to drive to the forest or to a graveyard each night.  Otherwise she wasn’t able to breathe…The heating period made the air in the town intolerable for Angelika. Each night she suffered from heart palpitations, shortness of breath and many more symptoms.

I told them to try to come over to me and so they arrived at nine o’clock Saturday, October 25th.

The last days of the life of Angelika S.

She arrived totally exhausted with a mask and heavy use of oxygen on the ride. We placed her on the porch.

For me her clothes were totally contaminated from her environment. I had to keep distance. Then she wanted to change her clothes.  I offered her some of my clothes, but she couldn’t tolerate them. I had used an unscented safe washing powder which I tolerate very well.

To let her into the house we had to shower her in the evening. I found old jogging pants of my husband’s and a cotton pullover; both had not been washed for a long time, and socks…

But on what should she sleep? She couldn’t tolerate wood anymore, no natural wood furniture. It didn’t matter if it was old or not. She even couldn’t tolerate the very old closet in the room we arranged for her. She wanted to sleep on the floor on linen which had not been washed for a long time and on a blanket which had been hanging in the attic for a long time too.

The windows to the forest were open all night and all day…

We live here in Germany in a wide forest area at Vogelsberg and so she was doing well with the clean air. However, last Monday it got damp and foggy and we had bad weather.

Her hope vanished that she would slightly recover here, but she wanted to try.  She didn’t want to go back…

Either she lay or sat on the porch …. I cooked for her, gave her much water to drink …. tried everything possible to help her to restore her soul and mind …. told her about CSN and other sufferers who had recovered by avoiding substances and by isolating themselves. Each day we left for a walk in order to get some fresh air. So far she was still able to walk for an hour.  On Tuesday, though slowly, she was able to walk until a car passed by and left exhaust emissions, which affected her in spite of her mask.

Then she said she couldn’t live a life as I do, without people around her and in isolation for such a long time and then it got worse and worse.  She had no hope that she could stay here any longer because she couldn’t tolerate the damp air especially during the nights.  She refused to eat or drink anymore.  She was in despair and her mucous membranes were – as in her home – bright red and swollen.

She had to leave, but where to go????

We were considering many possibilities: Switzerland, North Sea…back to the campsite because there is not that much forest in its neighbourhood…setting up an aluminium shed…but how to heat it…and so forth…

On Wednesday at 3 o’clock p.m. the son of my cousin came with a big car which was safer than her car. Her husband and we said goodbye…

They didn’t know where to go…they didn’t know…what to do….so they first drove back to her tiled room and then to the close-by nature site.

She survived the ride at five degrees Celsius inside the car and then I heard nothing from them anymore.

On Thursday afternoon when her husband had to go to work and go shopping for food, she put an end to her life!  I did not learn of it until Friday evening because it was the wish of her husband.

We are in deep grief about this lovely person…a human…who still could be living if there was accommodation for cases like hers in Germany. If there was just one clinic to go to which had clean rooms as at the Environmental Health Center in Dallas / USA. If we just had doctors who could diagnose chemical sensitivity in time.  If we just had support for the relatives who don’t know why all this happens.

This ignorance and intolerance about environmental diseases MUST stop. These are diseases that have been described by scientists like Prof. Martin Pall and others.  It’s well known what these diseases DO exist.

I have seen two suicides since last July.

• Two precious humans who didn’t know what to do because of their boundless despair.
• Two humans who felt as a burden to their families.
• Two humans who had worked hard all their lives.

We lament Angelika S. and we are shocked because of the lack of help for people with severe Multiple Chemical Sensitivity.

May the God of solace comfort the suffering of the relatives and may they find hope that their suffering is not forever…

That it will not be like this forever…

That the suffering stops some day…

And that some day there will be a recovery of all things lost…

Authors: Wolfgang and Mona B., Silvia, CSN – Chemical Sensitivity Network November 2009

• Japanese Version: “The last few months of the life of Angelika S.”
• Italian Version: “The last few months of the life of Angelika S. ”
• Spanish Version: “The last few months of the life of Monika S.”

Neurons lacking in plasticity are a factor in neurodevelopmental disorders such as autism and mental retardation. Essential nutrients help maintain normal neuronal plasticity. Nutritional deficiencies, including deficiencies in the long chain polyunsaturated fatty acids eicosapentaenoic acid and docosahexaenoic acid, the amino acid methionine, and the trace minerals zinc and selenium, have been shown to influence neuronal function and produce defects in neuronal plasticity, as well as impact behavior in children with attention deficit hyperactivity disorder. 

Nutritional deficiencies and mercury exposure have been shown to alter neuronal function and increase oxidative stress among children with autism. These dietary factors may be directly related to the development of behavior disorders and learning disabilities. 

Mercury, either individually or in concert with other factors, may be harmful if ingested in above average amounts or by sensitive individuals. High fructose corn syrup has been shown to contain trace amounts of mercury as a result of some manufacturing processes, and its consumption can also lead to zinc loss. Consumption of certain artificial food color additives has also been shown to lead to zinc deficiency. Dietary zinc is essential for maintaining the metabolic processes required for mercury elimination.

Since high fructose corn syrup and artificial food color additives are common ingredients in many foodstuffs, their consumption should be considered in those individuals with nutritional deficits such as zinc deficiency or who are allergic or sensitive to the effects of mercury or unable to effectively metabolize and eliminate it from the body. 

Reference:

Dufault R, Schnoll R, Lukiw WJ, Leblanc B, Cornett C, Patrick L, Wallinga D, Gilbert SG, Crider R., Mercury exposure, nutritional deficiencies and metabolic disruptions may affect learning in children, Behav. Brain Funct. 2009 Oct 27;5(1):44.

Twenty-eight incapacitated individuals (average 43 years old, 7 males, 21 females, range 12-70) exposed to molds and mycotoxins were studied and treated with a protocol of cleaning up or changing their environment to be mold free.

Injections of the optimum dose of antigens were given as part of the treatment protocol as was oral and intravenous (i.v.) antioxidants; heat depuration (sauna); physical therapy with massage and exercise under environmentally controlled conditions; oxygen therapy at 4-8 L/min for 2 hours with a special wood-grade cellophane reservoir and a glass oxygen container. Many patients were sensitive to plastics; therefore, exposures to these were kept to a minimum. Autogenous lymphocytic factor (ALF) was given as an immune modulator.

Of 28 patients, 27 did well and returned to work. One patient improved but did not return to work during the period of study

Reference: Rea WJ, Pan Y, Griffiths B., The treatment of patients with mycotoxin-induced disease, Environmental Health Center – Dallas, TX, USA, Toxicol Ind Health. 2009 Oct-Nov;25(9-10):711-4.

Eva Caballé “Eva’s No Fun Blogspot“ from Spain reports:

Few days ago I discovered that my blog had some visitors from this Japanese website, a blog done by Prof. Masumi Yamamuro of Tokyo University. When I read this post, I discovered that it was my article “The Naked Truth about MCS” in Japanese and they mentioned that it had been translated by Citizens Against Chemicals Pollution (CACP) and I decided to write them. Takeshi Yasuma, from Citizens Against Chemicals Pollution (CACP), explained me that he found my article at The Canary Report and he immediately translated it into Japanese with the subtitle “Cry of Spanish MCS Patient’s Heart”, because he was very impressed by it. He published the Japanese version of my article in Citizens Against Chemicals Pollution website last August and also in the September issue of their monthly newsletter.

I also asked him about MCS situation in Japan, and now, with his permission, I post the part of his email where he explained it and I also reprint CACP’s mission.

Takeshi Yasuma wrote:

There is good news.

On October 1, 2009, the Medical Information System Development Center (MEDIS-DC), a subsidiary organization of Ministry of Health, Labor and Welfare (MHLW) published the revised list of ICD-10 Japanese Standard Disease Code Master in which MCS is categorized in T65.9: Toxic effect of other and unspecified substances / Toxic effect of unspecified substance.

It has been now clearly recognized in Japan that MCS is NOT a mental disease but a physical disease.

This decision is welcomed by MCS patients and their supporters and they expect the possible coverage of MCS by health insurance, but so far it remains uncertain whether or how it will change.

Patients and their supporters will take actions for calling on Japanese government to give urgent supports for MCS patients including coverage of MCS by health insurance, strengthening medical services, financial support for livelihood and provision of safer houses.

On October 31 at Tokyo, we will hold a MCS symposium celebrating the recognition and calling on Japanese government to take further measures for MCS.

CACP’s Mission:

To provide information to the public and take action necessary for protecting human health and environment from harmful chemicals based on Precautionary Principle and Environmental Justice.

Main Activities:

• To issue monthly newsletter [PICO].
• To issue weekly mail service.
• To provide information at our website.
• To publish books and booklets related to environmental health.
• To propose our policies to the Japanese Government and local governments.
• To hold seminars for citizens on protecting human health and environment.

I want to thank to Takeshi Yasuma for translating my article, for letting me publish all this information about MCS in Japan and also for asking me to write a message to MCS patients and their supporters to be presented at the MCS symposium. It will be an honour to me!

Author: Eva Caballé, Eva’s No Fun Blogspot

Thank you very much Eva! Big Hug, Silvia

NOTES:

• Original post in Spanish and English by Eva Caballé at No Fun Blogspot
• Post translated into German by Silvia K. Müller and published at CSN Blog
• Post translated into Japanese by Takeshi Yasuma and published at Citizens Against Chemicals Pollution website (October 7, 2009).
• Post linked at The Canary Report (October 8, 2009).