Professor urges us to take people with chemical sensibility into account

 

Yesterday (Feb 2, 2010), in an independent student newspaper from the University of New Hampshire, a professor of chemical engineering appealed to the community to take “Canaries” into account regarding the use of chemicals and especially scents. He spoke of those persons who suffer from Chemical Sensitivity and who have to be seen – like those former canaries in mines – as indicators for toxic chemicals.

Some American and Canadian Universities have a “Scent Free Policy” which means that the use of perfumes and products containing scents is prohibited within these Universities. All visitors have to meet this policy. It allows students with allergy and chemical sensitivity to work and study.

Professor Ihab Farag, Chemical Engineering Department:

Many of us are familiar with canaries, the beautiful, colorful birds that tend to sing most of the time. Canaries also saved many human lives in coalmines. This is because canaries are much more sensitive to toxic gases than humans. Miners would take canaries with them in the coalmine. If the canary stopped singing and fell (or died), the miners knew to leave the coal mine quickly to safety.

There are individuals who have developed a very strong sensitivity to many common chemicals. These people can be very negatively affected and irritated by fumes, chemical cleaners, disinfectants, cigarette/cigar smoke, engine exhaust, solvents, etc. These people are often called “Human Canaries” of the modern world, because of the chemical sensitivity similarity to that of Canaries. Human Canaries of the 21st century tend to be very strongly irritated by everyday chemicals like perfumes, hair products, shampoos, shower gels, after shave lotions, antiperspirants, deodorants, hand sanitizers, chap sticks, finger nail polish, etc. Human canaries look the same as other people, and when you see one you probably will not recognize he or she is a human canary until an offensive toxic chemical triggers his or her sensitivity.

Please be considerate to human canaries and help them to enjoy life to the fullest. One way you can help the human canary and at the same time lower your exposure to undesirable chemicals, is to go fragrance-free: avoiding perfumes, and fragranced personal care products.

 

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, February 2, 2009

Reference:

Chemical consideration to the Human Canaries, Ihab Farag, Professor, Chemical Engineering Department, Letter to the editor 02-02-10, The New Hampshire, Independent Student Newspaper at the University of New Hampshire since 1911, Februar 2, 2010

Medicine needs Shift in Paradigm to focus on Environmental Medicine

Newspaper reports of chemically sensitive man

It took eight years until a doctor was able to make a correct diagnosis

The German newspaper Rheinische Post, one of the most noted papers in the Lower Rhine region, published an article about a man who hopped from doctor to doctor for eight years, until he finally got the right diagnosis. He responded to nearly all chemicals, even in lowest concentrations, which are almost omnipresent in everyday life. This was dismissed as mental problem for years. Then at last, the man from Rhineland received the proper diagnosis from a South-German physician: MCS – Chemical Sensitivity. If there was more focus on environmental medicine, cases like this current from the Rheinische Post, were avoidable.

Although he had physical troubles, he was told his problem was psychological

Ralf T. did a lot of sports until he developed more and more allergies. In addition to allergies, he experienced an increasing number of troubles, but no doctor could make a correct diagnosis and find the reason. The Rheinische Post lists the symptoms: “breathing problems, chronic fatigue, burn out, nausea, headache and many more”.

Cause of the disease: toxic adhesive

The graduate in sport science was a trainer in a fitness studio. An adhesive which was used to glue the flooring in his apartment ruined his health. It caused gas emissions of toxic chemicals which according to the Rheinische Post injured his immune system.

No help from the German obligatory health insurance

Now Ralf T. has to live in isolation and manage without money too. He would like to arrange his living environment to be toxic free to improve his health. But the attitude of the health insurance prevents such efforts. The Rheinische Post reports that the 52 year old wasn’t granted even basic things like a special bed. The insurance just hides behind regulations. There are no considerations what is indispensable to life for this man with environmental illness. He lacks any strength to resist.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, January 4, 9010

Translation: BrunO

A Guest with Chemical Sensitivity on German Stern-TV Tells What She Experienced during and after the Live Show

Coretta- Vetenarian with Chemical SensitivityThe veterinarian Coretta Danzer is sensitive to chemicals. She reacts to common household chemicals with various physical symptoms. In medicine this illness is called MCS – Multiple Chemical Sensitivity. It occurs specifically in industrialized countries and according to studies it affects about 15 to 30 percent of the general population in different degrees of severity. In spite of that, the disease is little discussed in public. This was the decisive reason that Coretta Danzer agreed to talk in common with the environmental medicine expert Klaus Runow, M.D. in the popular television show Stern-TV about this environmentally-caused illness. In the live broadcasting with Guenther Jauch a film feature was shown to the audience for better understanding. It provided an insight into what it means to have to live with MCS. As expected, remaining in the TV-studio was not easy for Coretta Danzer. Below, the veterinarian reports what discomfort it caused her and how she is doing now.

Coretta Danzer’s guest appearance at the studio:

Finally we had to be in Huerth near Cologne on Wednesday 12-09-2009 at about 9 p.m. My husband and me, we went by our own car, because it is impossible for me to go by train. On arrival, we rang up the editorial office for someone to come for us. A pretty neat young lady led us to the backdoor of the building in order to limit my exposure to irritants to the lowest level. However and needless to say, somebody was smoking just in front of the rear entrance and this was my first trouble.

A TV-studio is not really the best place for MCS-sufferers

We reached the room that was prepared for me at the first floor through the staircase. The corridor and the room was carpeted with needle felt and my prompt reactions suggested that it probably was treated with pesticides. I came in and took my mask from my nose and with every fourth or fifth word my voice vanished, I could only caw raspy sounds and had a terrible sore throat. That’s my standard reaction to pesticides. Immediately we opened the windows and I took my oxygen, which made my voice come back after a while, but still left me the sore throat. A toilet was individually reserved for me and perhaps it was cleaned with plain hot water, but unfortunately it still smelled of “toilet chemistry”.

Nice reception

Then the kind female reporter who visited us at home also appeared and said welcome. Just for me she had washed her clothes and herself without fragrances. Again she explained the procedure to us a bit and introduced us to Mr. Runow, whom we didn’t know before. Next Mr. Jauch came to us and invited us to a dinner after the show, which I politely declined at the same moment, because I was sure, I was unable to manage that.

What MCS really is didn’t matter

Mr. Runow announced to the show master Mr. Jauch, what he intended to explain to the audience. He planed to present magic tree air fresheners and to demonstrate with an cranium cross section what’s going on in the brain if you have MCS. But Mr. Jauch didn’t like that and explained to Mr. Runow, that he is not allowed to do this. We all were somehow puzzled.

A “glass box” to guard me against chemical substances in the studio

Me and my husband, we were invited to the studio before the broadcasting, to test an ad hoc acrylic glass case. When I stepped into the studio, I though I will never get over this. I had not expected it to be so bad. Plastics and other things I could not define stank terribly. The acrylic glass box had a massive smell of synthetics, it made me cough heavily and I developed a strong headache, my head was really swimming and I felt so dizzy. I rendered my audition inside the box and after that we left as quickly as possible for the recreation room. I was glad to have my oxygen, because without it I could not have survived this.

In face of promises the MCS item was postponed

Now they told us that we were scheduled for 11:30 p.m. I already was so wiped out that I even was unable to protest, because I was promised to be the first or at least the second item, to keep me from long wait. So we sat about more than two hours in the room, with windows open and without heating, as I could not tolerate the smell of the hot radiators.

Hardly endurable physical stress

They called us to the studio on the commercial break before our turn. As I did before, I protected myself passing through the halls and stairways with my charcoal-mask and in the acrylic glass case I applied my oxygen to avoid coughing. The stink inside the box was as bad, but outside it was even worse. I allocated all my power and tried to concentrate as well as possible to answer all questions well. It was very, very straining. My head felt like it would burst, my eyes burnt like fire, as did my throat and my bronchial tubes. I felt dizzy and bad. I did not know what I was able to, not at all. I was glad when our contribution was over. But I had to wait in the box until the end of the following item, before we were allowed to leave the studio. Once again we went to the recreation room to pick up our togs and to to say goodbye and we drove home instantly.

It takes its toll to explain MCS

Two weeks after the broadcasting I am still symptomatic. Every once a while I still taste this disgusting flavor of plastics and I’m even more sensitive than I was before the show.

I received many emails and letters which I still have not answered completely, as I’m lacking the power to focus long enough on writing the answers. But I shall deal with answering them all.

To write this report took a lot out of me as well. But I will be pleased to answer more particular questions about the broadcasting.

Authors: Silvia K. Mueller and Coretta Danzer, CSN – Chemical Sensitivity Network, December 22, 2009

Translation: BrunO for CSN

——-

Please write your opinion to Stern-TV:

Use the online form:

http://www.stern.de/tv/about/kontakt-e-mail-an-stern-tv-512593.html

Use your mother language and keep a civil tongue in your head.

Subject (Betreff): About MCS Dec. 12, 2009

The last few months of the life of Angelika S. who was chemically sensitive

Chemical Sensitivity – MCS is recognized as a disease and as a physical disability in Germany. The disease is coded at ICD-10 with T78.4 as an organic disease. One might think that people with MCS get proper medical treatment, are treated with fairness like other disabled people, get special workplaces and receive help. Sadly all of this is still lacking in Germany. People with MCS are left without medical attention and accommodations. If their families are unable to take care of them they are lost. For the very sick this sad and unacceptable situation can end in disaster as in the following authentic case.

The last few months of the life of Angelika S.

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.

AngelikaTo 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…

Angelika - Very sick woman - Multiple=

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

Martin Pall about genetic evidence and Multiple Chemical Sensitivity

Studies show chemicals act as toxicants in causing cases of Multiple Chemical Sensitivity; genes that metabolize these chemicals into other forms influence, therefore, susceptibility to getting MCS.

Guest post at Canary Report by Martin L. Pall, Professor Emeritus of Biochemistry and Basic Medical Sciences, Washington State University and Research Director, the Tenth Paradigm Research Group.

Dr. Martin Pall

Martin Pall: I have emailed the following as an open letter to the Denver Post in response to the article on multiple chemical sensitivity (MCS) that was published this weekend. I think the published article was generally a step forward in terms of public understanding of MCS. But the article left out a number of important things and this letter is an attempt to deal with some of those. I have asked them to consider publishing this as an Op-Ed piece, but wanted to make it available regardless of whether or not they opt to do so.

Thank you for writing this article on multiple chemical sensitivity (MCS), the term that is used in most of the scientific literature on this disease. There are vast numbers of people who have been afflicted in this epidemic of chemical sensitivity and I am sure that they are all thanking you. I also thank you for mentioning a bit of my work on this disease.

Some of your readers have already made quite a number of important points about MCS so I can focus here on just a few remaining issues. How do chemicals act in MCS? We know now that the seven classes of chemicals implicated in MCS all produce a common toxic response in the body, excessive activity of a receptor in the body called the NMDA receptor. So even though we have a vast array of such chemicals, we know how they can produce similar responses in people.

There is compelling genetic evidence that these chemicals act as toxic agents (toxicants) in the body. Four such studies have been published by three research groups in three countries. Collectively they implicate six genes as influencing susceptibility to MCS, such that people carrying some forms of each of these genes are more susceptible to becoming chemically sensitive than are people carrying other forms of the same genes. All of these genes control the activity of enzymes that metabolize these chemicals into other forms. Most of these studies show a high level of what is called statistical significance. In the Schnakenberg and colleagues studies, the chances of getting their results by chance are less than one in a million billion. So obviously, these are not chance results. What these studies show is that chemicals are acting as toxicants in causing cases of MCS and that genes that metabolize these chemicals into other forms influence, therefore, susceptibility to getting MCS. These studies, then, provide compelling evidence that cases of MCS are caused by toxic chemical exposure. Clearly they also show that MCS is a real disease, otherwise one would not be able to do such studies clearly linking the chance of becoming ill with MCS to the action of chemicals acting as toxicants.

Dr. Herman Staudenmayer has, for some 20 years claimed just the opposite. He claims that MCS is psychogenic, caused by psychological responses and according to him, is not a toxicological phenomenon. He has maintained this claim by ignoring contrary data wherever it occurs. He has ignored all of the evidence that chemicals implicated in MCS produce a common response in the body; he has ignored the roughly two dozen studies showing that MCS patients show objectively measurable responses to low level chemical exposures, responses that differ from those of normals. He has ignored all of the evidence implicating excessive NMDA activity in MCS; he has ignored the dozens of animal model studies on MCS; he has ignored over 50 studies that show that cases of MCS typically occur following chemical exposures; he has ignored the various other measurable physiological changes reported to occur in MCS. This has all been documented in my book “Explaining – Unexplained Illnesses” and in my article on the toxicology of MCS that is coming out next month in a prestigious reference work for professional toxicologists “General and Applied Toxicology, 3rd Edition”. It is also documented on the MCS web page of my web site: The Tenth Paradigm

Clearly you cannot do science by simply ignoring the existence of vast arrays of contrary data. However, Staudenmayer provides us with a couple of other tests of his views in his book, predictions that allow us to test his theory. He predicts that psychological factors are necessary and sufficient to account for the properties of MCS. This, of course, is contradicted by all of the evidence I referred to earlier. Therefore we should reject his hypothesis based on his own prediction. He provides a second prediction as well (the exact quotes from his book on these predictions are provided on my MCS web page). He predicts that the variation of susceptibility to MCS is not caused by variable responses to toxic chemicals. Clearly the genetic studies discussed above have shown that this is false and therefore, his hypothesis should be rejected for that reason, as well.

It is clear, from the above, that Staudenmayer’s construct was basically a house of cards. Now that it has collapsed, where does that leave us?

Firstly it leaves us with reversing the errors of the past. We need to start treating MCS sufferers as victims of unsafe chemical exposure. Many of them have previously been used, abused and discarded. If we live in a society where people are not disposable items we need to “do unto others as you would have others do unto you.”

We obviously need to start regulating chemical usage much more carefully, to avoid initiating new cases of MCS. It is imperative to develop tests for chemical activity in MCS, just as we have developed tests for chemical activity as carcinogens. Then we need to use these tests to effectively regulate the use of toxic chemicals.

We need to develop specific biomarker tests for MCS, tests that can be used to objectively confirm diagnoses initially based on subjective symptoms. I think we already have several very promising approaches to doing this in the scientific literature and a minimal amount of further study may be all that is needed to develop such tests.

We need to confirm that chemical avoidance is key to therapy and to develop other therapeutic approaches to work along with avoidance. The environmental medicine physicians and others have already made very important progress in this direction and I am optimistic that further progress can be made quickly. Such progress is relevant not only to the treatment of MCS patients but also to the treatment of clearly related diseases including chronic fatigue syndrome/mylagic encephalomyelitis and fibromyalgia. All of these diseases are caused by what I have called the NO/ONOO- cycle and the way to treat them, in my judgment, is to lower the activity of that vicious cycle mechanism.

Martin L. Pall

Professor Emeritus of Biochemistry and Basic Medical Sciences, Washington State University and Research Director, the Tenth Paradigm Research Group

Reprinted with permission from the author. Dr. Pall cautions the reader that he is a PhD, not an MD, and none of this should be viewed as medical advice.