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Missing: A life broken by Multiple Chemical Sensitivities

Salvador López Arnal interviews Eva Caballé, Spanish author and MCS activist

Yes, there is something hidden in this silence. It is the interests of the chemical and pharmaceutical companies so that people won’t know that their products are causing new and terrible illnesses like Multiple Chemical Sensitivities (MCS). Actually, recently it has been demonstrated that MCS is not a psychological illness and that old studies that said so were fabricated to protect the interests of the chemical and pharmaceutical industries.” – from Missing. A life broken by Multiple Chemical Sensitivities

Eva Caballé
Eva Caballé is a 37 year-old Barcelona economist who lives with MCS. She was a bank employee and was a member of the rock group Lefthanded and now is the author of the recently released book (in Spanish) released by the publishing house, Libros de El Viejo Topo, Desaparecida. Una vida rota por la sensibilidad química múltiple (Missing. A life broken by Multiple Chemical Sensitivities). In the book’s introduction, Clara Valverde, says: “…But Eva is not weird. It is known that 0.75% of the population now lives with severe MCS and that up to 12% have mild or moderate MCS. All those people who are bothered by smells, those are part of that 12%. But most doctors and the majority of society are not aware of this and that is why it has taken Eva so many years to receive the right diagnosis. That is why Eva only has the help of her immediate family. That is why there are no demonstrations about this out on the streets nor her case is on the front page news.”

Eva Caballé is also the author of the blog No Fun. She says: “No Fun is a blog about Multiple Chemical Sensitivities, Chronic Fatigue Syndrome/ME and Fibromyalgia with information and advice for people who are sick and for anyone who wants to live a healthier life free of toxics”.


López-Arnal: Let’s start with a definition. What is MCS?

Eva CaballeEva Caballé: MCS is an aquired chronic illness, not a psychological one, which manifests itself with multisystemic symptoms as a reaction to a very small exposure to chemical products, normal everyday chemicals but unnecessary ones, like perfumes, air fresheners or laundry softeners.

The symptoms, which are chronic and they become acute in a crisis, include fatigue and respiratory, digestive, cardiovascular, dermatological and neurological problems.

MCS is a syndrome with three grades of severity, so not all of us who are sick suffer the same level of disability and isolation.

It is an illness which has been known since the 1950s, but it has yet to be recognized by the World Health Organization (WHO), despite that there are more than 100 research articles that support the organic basis of MCS, that the number of people affected is increasing rapidly, at a younger age, and that the European Parliament includes MCS in the growing number of illnesses related to environmental factors.


LA: You say that MCS is not recognized by the WHO despite the number of scientific articles that support the organic basis of this illness. Why do you think that the WHO is so sceptical, so cautious?

Eva CaballeEC: We know that the WHO has been debating the MCS issue for years. But the process of recognizing the illness is taking longer than usual due to the pressure that the chemical and pharmaceutical industries are putting on the WHO, as they are not interested in having it known that they are directly responsible for this illness.

Without going any further, in Germany, where MCS is recognized as an illness, the industries continue exercising their control through tools like Wikipedia. This was denounced by the CSN Association in an article which I translated and published on my blog.

The article about MCS in Wikipedia in German is edited each day, sometimes every few minutes, because the administrators of Wikipedia, who have interests in the industry, veto the information trying to make sure that MCS is not known or if it is, that it be thought of as a psychosomatic illness.


LA: You also say that the number of people with MCS is growing rapidly. Can you give us any data to illustrate this?

Eva CaballeEC: I am quoting Dr J Fernández-Solà (an Internal Medicine specialist from the Hospital Clinic in Barcelona) who, in an interview that was done with him at the beginning of this year for an article on MCS in the Spanish magazine, Interviu, said that the amount of patients who were seeking medical help for this illness is growing rapidly. In his hospital, each year, they get between 50 and 60 new patients. That means one new patient a week.


LA: What symptoms could make one think that they have this illness?

Eva CaballeEC: Perhaps the most common symptom is to notice unbearable smells which one did not notice before. One stops tolerating various chemical agents like cleaning products, perfumes, tobacco smoke, car emissions, etc. When you have MCS and you are exposed to these chemical agents, a series of symptoms are triggered automatically like choking, irritation of the respiratory tract, tachycardia, headaches, mental confusion, dizziness, nausea, diarrhea, extreme fatigue and/or pain. These symptoms don’t get better until you stop being in contact with the chemical agent that produced it.

Normally you also stop tolerating alcohol, dairy products or gluten. You also develop intolerance to various foods and medications.

Often there are other environmental intolerances: to heat, to cold, to noise, to sunlight and to electromagnetic fields (computers, high power lines, telephones, cellular phone atennas, microwaves, etc).


LA: What differences are there between MCS and, let’s say, Fibromyalgia?

Eva CaballeEC: MCS, Chronic Fatigue Syndrome/Myalgic Encephelitis (CFS/ME) and Fibromyalgia (FMS) are illnesses of the same family. In fact, many of us who have MCS, we actually have the three illnesses and more and more people with CFS/ME and FMS, with the years, also develop MCS.

We have a lot of the same symptoms, but the biggest difference is that those with MCS do not tolerate even the smallest exposure to chemical substances, which is the reason why we have to maintain a strict environmental control and we cannot go outside without a mask with a carbon filter to filter out the environmental toxics.


LA: What medical treatment does a person with MCS receive from the Spanish health care system? Do you think it is adequate? Do you think it is fair?

Eva CaballeEC: In Spain, MCS is not recognized as an illness and so health workers and the general population are not aware of this serious pathology.

Instead, countries like Germany, and recently Austria and Japan, have recognized it and other countries are on their way to doing so and offer health services to those who have it and are establishing protocols for prevention.

In Spain there are hardly any doctors in the public health care system who can diagnose this illness and it is very hard to get a diagnosis and even harder to get treatment. I am convinced that there are a lot of people in our country who have MCS who are not diagnosed, many of who end up in the hands of psychiatrists because of the lack of knowledge of our doctors. Also there are no protocols or policies on “Free of fragrances” for our hospitals and public buildings, so for us going to the hospital means getting sicker.

In Spain, we people with MCS do not have health care services, we do not have the right to economic help to adapt to our disability and we do not have the right to a pension when we cannot work. I don’t just see it as unjust: I think the way we are treated is a violation of our constitutional rights.


LA: But, isn’t it a bit of a contradiction the fact that the European Parliament considers MCS an environmental illness and that in Spain, the central government and the regional governments look the other way?

Eva CaballeEC: Of course it is! It is all with the excuse that the WHO has not yet recognized it as an illness. This does not mean that it does not exist: the decisions that are taken at a bureaucratic level do not make us patients disappear by magic.

They use this argument to discredit the illness when it is all really a conflict of interests. Also they will tell you that there are no specific biomarkers for MCS, but that is the same as other illnesses which are recognized.


LA: What percentage of the population is it thought to be affected by this illness right now?

Eva CaballeEC: According to the 2007 study published by doctors from the Barcelona’s Hospital Clinic, J. Fernández-Solà (Internal Medicine) and S. Nogué Xarau (toxicologist), 5% of the population has MCS. They specify that: “More that 15% of the general population present mechanisms of excessive response when faced with a chemical or environmental stimulus. In 5%, these processes are clearly pathological and they are above the organism’s capacity to adapt and so it results in skin, respiratory, digestive and neuropsychological manifestations, frequently chronic and persistent.”

So if MCS affects 5% of the population, it cannot be considered a “rare disease,” which are the ones that affect less than 0.0005% of the population.


LA: Are you speaking about the Spanish population or are you thinking in European or world terms?

Eva CaballeEC: I am talking worldwide. It is considered an illness of the industrialized world.

In countries where there are statistics about this illness, like in Canada, we see that the amount of people that have MCS is not small. According to the Environmental Health Association of Quebec, there are 4 million people with MCS in Canada.


LA: And do we know the causes? MCS, as you have said, is a disease related to environmental factors. What does that mean exactly?

Eva CaballeEC: Studies say that the cause is the toxics in the environment we are exposed to. There are two ways of developing MCS: from one single exposure to toxics at a high dose or by several exposures to small amounts over the years.

There are toxic substances in the air we breathe, in the water we drink (in the plastic if we drink bottled water), in the clothes we wear (formaldehyde, dyes, traces of pesticides), in the cleaning products, in our beauty products, in the food we eat (pesticides, additives and artificial colours which have been banned in the USA for many years for being cancer causing) or, for example, in the silver dental fillings (which have mercury).

Over the years, our body accumulates all these chemical substances which circulate in our environment without any controls, substances which we must remember that it has not been so many years that they have been in use, until the toxic load is unbearable and we end up getting sick, which according to our genetic make-up, it could end up being MCS. But other people do not get off scott-free because they will end up developing cancer, asthma, allergies, autoimmune diseases or any other illness of environmental origin.

Even doctors complain that there is no funding for researching MCS, that no one wants to fund MCS studies, because studies normally are funded by pharmaceutical companies so they can develop a medication, that is, for their own benefit. But as MCS patients do not tolerate any medication, we are of no interest to them.


LA: But, what sense does it have to know all this and not take any measures? Why do we keep using these products if we know of their toxicity and of the high risk their use entails? It is not an ideal situation the one you describe. Why do we not put some order in this toxic chaos?

Eva CaballeEC: That is a good question. It does not make any sense to not take any measures and to keep on using these products. If health authorities do nothing, the option is to stop using these toxic products and it will have to be us who take charge of things.
In the labels on the fabric softener, the beauty products, the perfumes or the air fresheners it does not say: “Warning, this product is toxic and it will keep accumulating in your body until it causes you Multiple Chemical Sensitivities”. No one warned me. That is why I try to share all that I have learned ever since I got sick 4 years ago so that people will know what we are not being told.

If, for example, it is so hard to regulate tobacco, all this will surely be harder because we are not talking about one product. The problem is more than that. Has everyone forgotten that in the 1960s medical reports were hidden or changed, reports that showed that tobacco caused cancer? What is happening is nothing new. Power is not in the hands of politicians. It is in the hands of the multinationals.


LA: Describe, briefly, the life of a person with MCS. What measures does the person have to take? What treatment does the person have to undergo?

Eva CaballeEC: The treatment is basically one concept: Environmental Control.

Environmental Control is to basically avoid, as much as possible, any exposure to toxics or chemical substances in general and the basic points are:

  • Eat organic, non-processed foods (normally it is recommended to avoid dairy products and gluten).
  • Filter the water, the drinking water and also the water for cooking and showering.
  • Substitute all beauty and cleaning products with ecological ones, ones without aroma. Logically, one must stop using colognes, air fresheners, laundry softeners, etc.
  • Use ecological clothing that does not have any dyes nor toxics.
  • Get an air filter.
  • Buy furniture and mattresses that are made of ecological materials that have not been treated with chemicals and when you paint the house, it must be ecological paint.
  • Avoid or minimize exposure to electromagnetic fields.
  • Use a carbon-filter mask when you go outside or in situations in which there are a high concentration of toxics.
  • Try to live in an area which is the least contaminated as possible and in a house made of non-toxic materials.

As you can see, Environmental Control involves a high financial cost, for which we have no help and also, the last point, is almost impossible to carry out.

Besides Environmental Control, which is also beneficial for healthy people, there are personalized treatments. These involve nutritional supplements, saunas, oxygen therapy, etc. Each person with MCS is different and also some people have other added illnesses. Therefore, one has to have a lot of tests done to determine what is best in each situation. In Spain, none of this is covered by the public health care system.

Those of us with severe MCS can barely leave the house. Our lives are reduced to our house, which becomes our prison, in which most of us cannot even do any housework. In some cases, we spend most of the day in bed and rely of family members for almost everything. The contact with the outside world is reduced to talking on the phone, those who have energy to do so, the odd visit from people who are willing to change their washing and cleaning habits, and through Internet, for those of us who do not have severe cognitive or electromagnetic problems.


LA: What government help does a person with MCS receive? It does not seem possible for someone so sick to go to work. How can you organize your home if your family does not have the available time?

Eva CaballeEC: We get no help when we have MCS. Even the masks, without which we cannot survive, we have to pay them ourselves. This is the economic drama that goes along with this illness.

When one has severe MCS, one cannot work, but if one has mild MCS it is not possible either because no employer is willing to adapt the work place so that a person with MCS can continue working. In some cases, some people get disability, but usually it involves going to court. We must remember that there are young people who get sick who have not worked long enough to have the right to a pension. What is their future? I always say that I am amazed that there is not more depression amongst people with MCS. Who would not be depressed in such a hard situation?

One can try to get disability, but the amount of money that one gets is very small, depending on the scale of severity recognized.

In my case, I am lucky to have my husband’s and my mother’s help, because I am so severely ill that I cannot do anything in the house, nor even cook for myself. Even if I had the money to pay someone to come and help me at home, that would not be possible. Just to be able to have my mother come over, she has had to change all her washing and cleaning habits as well as showering herself before coming.


LA: Why do we hear so little about Multiple Chemical Sensitivities? What is behind all this? What is behind this silence?

Eva CaballeEC: Yes, there is something hidden behind this silence: the interests of the chemical and pharmaceutical industries not to have it known that their products cause terrible new illnesses like MCS. Recently it has been proven that MCS is not psychological and that studies that were done in the past which said that it was psychological were manipulated in order to protect the interests of the chemical and pharmaceutical industries.

Unfortunately, it is very easy for the government to ignore us, as most of us live under house arrest and we do not have the strength to organize ourselves. It is clearly an abuse of power. Only our families, friends and neighbours know we exist and how hard our everyday life is.

But, despite the seriousness of our situation, we are many, more every day who, from our homes, through Internet, fight for our rights, to try to make MCS visible and we share information to help each other out, as our government does not help us.


LA: You talk about studies that were altered that “showed” that MCS is a psychological illness in order to preserve the interests of large corporations. Were they blinded by the colour of money? Can you give us an example?

Eva CaballeEC: On September 2008, the magazine Journal of Nutritional & Environmental Medicine, published a study by Goudsmit and Howes entitled “Is multiple chemical sensitivity a learned response? A critical evaluation of provocation studies”. This study showed that MCS is not a psychological illness and that its origin is tied to chemical substances. I translated to Spanish the article that MCS America dedicated to this study:

“In the past, a small number of badly designed studies, suggested that MCS was a psychological illness related with pre-existing expectations and beliefs. This is a stance that the pharmaceutical and the chemical industries have made an effort to have everyone believe, because this way, their chemical products would stop being the responsible ones and the use of profitable psychiatric medications would be promoted, in the absence of medications which could counteract the effects of environmental contamination. Given the fact that most chemical and pharmaceutical companies have the same owner, this position has been promoted energetically and very cunningly through publications controlled by the industry itself. Fortunately, these manipulated studies were examined by Goudsmit and Howes using additional scientifically accepted criteria. That way, the studies that talked about a psychological base for MCS were proved to be very misleading due to numerous deficiencies and methodological mistakes. It was determined that MCS is related to exposure to chemical substances rather than to anxiety, psychosomatic states and depression.”


LA: One of your articles is entitled “We are born naked” and it has had a great repercussion amongst people with MCS and other people interested in the topic. Why? What was this article about?

Eva CaballeEC: I wrote the article for the on-line cultural magazine Delirio, which exposed, without holding back, the total neglect and abandonment that we, people with MCS, suffer, making a special point on the situation in Spain. “We are born naked” had also two photos of me naked wearing a mask which caught the attention of MCS associations in other countries, which resulted in it being translated into 9 different languages.

The reason for its success is that people ill with MCS all over the world felt totally identified with the situation we live in Spain. Unfortunately, even in countries were MCS is recognized, people with this illness are abandoned and silenced because of the economic interests go before our health.
In the next number of Delirio, dedicated to the topic of silence, there will be another article on MCS. They have asked me to write it to explain the success of “We are born naked” and that way we continue to inform on MCS.

We are the “canaries in the mine”, we are the warning of the disaster which is coming. We are the evidence that the actual model of society has failed, although no one wants to admit it nor pay for it, nor do anything about it. For all this, they want to silence us.


We are born naked 1 We are born naked 2 Silence

Eva’s MCS articles published in the Spanish magazine Delirio


LA: Disaster that is coming? What disaster? Why has the actual model of our society failed? Is this because of the illnesses it generates? Tell me about a more humane model.

Eva CaballeEC: The cases of MCS are increasing rapidly and in younger and younger people. Each day there are more children with allergies, asthma, with celiac intolerance, etc. The cases of cancer are multiplying and are appearing in families with no cancer history. There are constantly new studies that show the relationship between chemical substances and electromagnetic radiations with certain cancers or an increase in allergies. If something is not done, the future that awaits us is not that of a healthy society.

I, like other people with MCS, are the proof that this society has failed. When I was little, I use to think that the government looked after us and that if something was sold, it was because it was safe. I could not have been more wrong. The air quality in cities like Barcelona or Madrid is scandalous. Our food is full of pesticides, with all kinds of additives and they are allowing the use of transgenic modified foods. They let us get sick and then they abandon us with no help, with no health services as it has happened to me. You study and get a degree, you have a good professional career and when you are supposed to begin to enjoy your life, it is all over. Is that a Welfare State?

Measures have to be taken to stop putting the economic interests before health. Chemical substances and electromagnetic radiations should be banned and regulated. Transgenic modified foods should be banned. Organic farming should be encouraged as well as alternative energies…There is an infinite number of measures to be taken, but the important thing is to change the direction and to start before it is too late.


LA: You have written a book, a magnificent book, entitled Missing. Why Missing? Where have you disappeared from?

Eva CaballeEC: Thank you for praising my book. As a new writer, it is an honour.





LA: The honour, dear Eva, will be that of the readers, I can assure you.

Eva CaballeEC: I thought of the title when I read the great introduction to my book that Clara Valverde has written (she is a writer, president of the Liga SFC- CFS League- and lives with Chronic Fatigue Syndrome). It was then that I realized that a lot of people might think that I disappeared from the face of the Earth. I went from having a job with a lot of responsibility in a bank, going to the gym every day, going to rock concerts, going out with friends and sharing holidays with my family, to being locked up in my house to be able to survive. Seen from the outside my immediate group, I am missing, kidnapped by MCS.

The outside world is toxic for all, but for those of us who have MCS, it is to the point that we cannot go out without a carbon-filter mask that protects us from harmful chemical substances and, in some cases, the severity is such that even with a mask, we cannot go out. I am sentenced to live within my four walls because they have not taken measures to ban chemical substances that, in me, set of a crisis and in other people makes them develop an environmental illness. Does no one realizes that it is not normal that every day we hear of a cancer death? Does no one care that this society is sicker every day and that this is not sustainable?


LA: Finally, how should society and the health services act regarding these new illnesses? Are they really new? Can you suggest some basic ideas?

Eva CaballeEC: As I was saying before, MCS it not really new as the first cases were reported in the 1950s. We cannot use the idea that they are new as an excuse in 2009 to justify that nothing has been done.

At an international level, the first thing should be that the WHO recognize MCS once and for all as an illness. But until this happens, our country should recognize MCS, following the example of other European Union countries. Also they should train doctors and adapt the health services for MCS. All this would also mean that we should have access to disability pensions and other support to be able to adapt to our illness.

Right now, when people with MCS get sicker, because of our illness or because of another illness we might also have, we do not have anywhere to go because there aren’t any hospitals that are prepared for us and health workers do not know about our pathology. That’s how serious our situation is.

It is also necessary to put into place prevention policies such as “Free of fragrances” ones in hospitals and public buildings and to control and ban certain substances. All this would be beneficial for the health and well-being of all citizens, not only those of us who have MCS.

And, obviously, there should be put in place a public education campaign so that people can get to know our disability. When you go out on the street with a mask, you leave yourself open to all kinds of mocking and abuses and this is unacceptable. There are people who are ill who do not even get any support from their friends and family, all because MCS is not recognized.

We are not asking for a special treatment, but an adequate treatment for the problems that this illness creates.


LA: What you are saying and asking for is very reasonable. Thank you for your words. Would you like to add something else?

Eva CaballeEC: Yes. I would like that making my situation public, as I do through my blog and now, even more, through my book, could serve as a warning to all those who are still healthy. Perhaps they think that because they do not have the genetic predisposition to MCS, they are safe, that they cannot get sick like I did. But this is not so. As I have told you, the chemical substances that cause MCS, also provoke many other illnesses. Also, we can and we should live in a different way, without so many chemical products and that will be good for our health and also for the environment. We must change before it is too late and the change starts with each one of us because as consumers we have a lot more power than we think. If there is no demand, then there is no offer.

And to end I would like to bring up a paragraph from my article “We are born naked”:

“Those of us who live with MCS would like this illness to be recognized, we would like to have the same rights as other chronic patients, we would like society to know of the risk it is in, we would like the government to protect its citizens and to help them prevent getting sick unnecessarily. We don’t want anyone else to feel naked because of having MCS”.

Interview by Salvador López Arnal with Eva Caballé, November 2009

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Comments

  • earthwalker

    November 9, 2009 at 3:34 pm

    I know I certainly feel naked due to MCS, because one of my hardest challenges is finding clothing to wear. I am only one outfit away from being naked. Thank you Eva for helping spread awareness about this terrible affliction affecting so many around the world. Let us know when your book is translated into English! x Julie

  • Eva Caballé

    November 10, 2009 at 1:52 am

    Thanks a lot Julie for posting my interview!
    Your clothing’s trouble must be terrible! I’m so sorry!! Only who live with MCS can really understand this terrible illness.
    We are looking for a publisher who wants to publish my book in English.
    Kind regards from Barcelona,
    Eva

  • Chris Brown

    November 10, 2009 at 4:42 am

    Eva Caballé should learn her history instead of starting over at the beginning. Also, it is not helpful to confuse chronic pain, chronic tiredness, and sensitivities. When will people with sensitivities acknowledge their own human rights, including their right not to be subjected to a reverse onus, by clinicians or by anyone, concerning their experience of repeatable, controllable circumstances? The arguments forwarded assume this reverse onus as their starting point, sabotaging persons with sensitivities while pretending to be helpful! Learn some human rights and medical ethics, and stop invisibilizing the daily unnecessary killing of thousands of people with undiagnosed sensitivities, worldwide, in the health care system. The cult of environmental medicine, with its revisionist history and confused arguments, is the worst thing that ever happened to persons with sensitivities. Chris Brown, Advocacy Gateway for Environmental Sensitivities

  • BrunO

    November 10, 2009 at 10:36 am

    @Chris Brown
    It is true, environmental diseases should be considered more as political issues and matter of civil rights. But you seem to be confused. You read the interview? You know on which side you are? May be my teutonic understanding english is not good enough but you seem to mix up the old school environmental medicine with the one environmental victims are claiming.

  • earthwalker

    November 10, 2009 at 11:01 am

    @Chris Brown
    I remember you from Facebook. You seem to love to tear up anyone with a voice who tries to speak up about environmental illness. You seem to think this type of infighting is productive. I see nothing in your comment that is helpful or educational. Eva is helping to spread awareness of our condition in a country where MCS has no visibility.

    If you truly believe her efforts are counterproductive to our rights and needs, what would be more helpful is to remove your vitriol and offer practical advice on how you see we should be educating.

    By attacking someone, you put them in defense mode and when in a defensive mode, people are less able to take in criticism. And I have no idea what you are trying to say. Specifics would be helpful.

  • Julie Laffin

    November 11, 2009 at 7:42 pm

    Eva,
    Thank you for this amazing interview. I am going to send it to several people I know. You are not alone. Many of us are here to support you and defend your efforts. You are right, this is a civil rights issue of supreme importance. Two days ago I did a public presentation in Chicago via live video feed. I simply told the truth about my EI and the limitations of my current life (mostly housebound except for walking in the woods) and opened myself up to questions. I used to be very active in the performance art scene in Chicago and am trying to stay connected to that in any way I can. Please keep activating. Love and good wishes, to you, Eva.
    Julie

  • Eva Caballé

    November 12, 2009 at 2:06 am

    Chris Brown, I don’t understand what you are trying to say, but honestly, I don’t really care. I’m living with MCS since 4 years ago and of course I know what I’m talking about. And I think that you’re a little bit confused, because here we don’t talk about “sensitivities”, we talk about Multiple Chemical Sensitivity (MCS).

    Thanks a lot BrunO, earthwalker and Julie for your support!

    Julie, your performances are amazing and so are your photos! I agree with you, we must keep activating no matter what. Nobody will manage to silence us anymore! Love and good wishes to you, Julie!

  • earthwalker

    November 12, 2009 at 12:24 pm

    Eva, look you’ve gotten almost 300 views on this article since it was posted just a few days ago. No, you will not be silenced! People are listening to you. Power to you! x Julie

  • Deb

    November 12, 2009 at 6:33 pm

    Love the article – way to go Julie and Eva!

  • Chris Brown

    January 15, 2010 at 7:11 am

    I have explored the issues around environmental sensitivities for about 8 times longer than you, Eva, as has William Rea. People who forward the idea that sensitivities, multiple sensitivities, and/or chemical sensitivities arise from a single disease entity are the worst thing that happened to people with sensitivities in the past fifty years. You are doing to the group what people with IgE mediated allergies did for decades, by trying to impose an arbitrary concept a heterogeneous group. It does not help to adamantly declare the existence of a disease entity, to call for its application when a compendium of disorders are involved. People who are sick and/or hurt, who are victims of human rights abuses around the planet, seem to have a hard time thinking their way out of the simple fact that the revisionist history and concepts of the cult of environmental medicine are misleading.

    As for supporting persons with sensitivities, I had the first human rights cases federally and in Ontario. I have done case advocacy work for dozens of consumers. If you check with public servants and politicians who were involved at the time you will learn that I was responsible for getting Health Canada to encourage protections for people with sensitivities between 1988 and 1993, including efforts to stop the unnecessary injury and killing of persons with sensitivities in health care.

    Until persons with sensitivities stop seeing criticism of arbitrary, undifferentiable concepts about sensitivities as being “infighting,” you will obscure our actual history, including scientific and clinical information dating back hundreds of years.

    As William Rea comments: I would define Chemical Sensitivity as the adverse reaction to the ambient dose of toxic and non-toxic chemicals, and it can be manifested in any system in the body. The definition problem stems from the work of Cullen from Yale.1 We’re not sure whether he worked for the chemical companies or whether he just was ignorant. [In any case] …he didn’t come to any of us. He created something called “Multiple Chemical Sensitivity” and this was defined as an entity that has only clinical symptoms and no signs and no laboratory data. Of course he was very wrong about that. And that has fueled the controversy for the last twenty years. And that’s been part of the problem. But I think everybody working in the field agrees on the definition that I gave.

    http://readorwatched.blogspot.com/2009/12/exclusive-interview-dr-william-j-rea-of.html

    The pain and oppression people with sensitivities feel is not a good reason to forward ideas that are counterproductive in encouraging the protection of persons with sensitivities from being unnecessarily killed in health care.

    I used to share the ideas of those who are critical of what I have posted. Eventually I learned that it is not productive to insist on an arbitrary, undifferentiable disease concept when doing so merely enables abusers by putting a flawed foot forward.

    People like Michel Joffres and many others who support persons with sensitivities have been frustrated with the mental lockdown amongst consumers who seem to have abandoned a long, mainstream-accepted reality in favour of a revisionist version of our situation, the flaws in which cause unnecessary problems.

    People who forward the MCS paradigm are paving their way forwards over the graves of people their flawed concepts are helping to get buried alive.

  • Chris Brown

    January 15, 2010 at 7:20 am

    Also – for Earthwalker, what I have suggested to you and others in the past is that the community learn the paradigms and address the issues listed at http://ages.ca

    You have not learned anything from that site, nor have you ever addressed the issues raised there.

    Read Bradshaw, or talk to your own favourite healers. The worst abuses are usually carried out by people who are being abused themselves, who are blinded by their own pain and determination.

  • earthwalker

    January 15, 2010 at 11:13 am

    Chris Brown, I still don’t understand what you are trying to say. If you are saying not to use the term “Multiple Chemical Sensitivity” well on Planet Thrive I have avoided using that term and use “Chemical Sensitivity” or “Environmental Illness” whenever possible. We do use “MCS” as an acronym because it is what people put in Google searches and we want people to find our website. “Multiple Chemical Sensitivity” was used in the title of this article because that was the title of Eva’s book. But in general, we avoid using “Multiple Chemical Sensitivity.”

    Aside from that one point, I can’t understand what you think we should be doing different. You write a lot of words here and on your site, which I have looked over. But due to my toxic brain injury, I cannot process large amounts of dense text. Especially those that don’t have specific examples and seem to go around in circles. When you can communicate your ideas in a way that people can actually understand them, you might find people can actually learn from your experience…until then, I find your arguments confusing and have no idea what you are trying to get at, aside from saying that we are killing people by our ignorance. Well, I’m still ignorant in that case. Please enlighten me sir since you seem to think you have all the answers.

  • Chris Brown

    January 15, 2010 at 11:47 am

    Maybe it’s not time yet. Take your time.

    Eva and others are forwarding a revisionist history of sensitivities that eclipses the actual history, disempowering consumers by invisibilizing long-existing mainstream clinical and ethical information, institutional accommodation, even as they express concern.

    I’m sorry, but I do not know how to make things simpler than what is on http://ages.ca Perhaps you might start by learning about the “demedicalization of disability” and how that huge campaign by the cross disability movement over the past thirty years applies, especially in a situation where people are being subjected to a reverse onus about their experience of repeatable controllable circumstances.

    Perhaps you could learn how the MCS approach, when it is applied, hurts the broader group in ways similar to the ways people were hurt by those who forwarded an approach tied to IgE mediated reactions. It is arbitrarily exclusionary. The people with sensitivities who are excluded from the model get injured or killed in society.

    People on Facebook have insisted that the explanation is in quantum physics (Lady Itchalot) or that individual susceptability is not as important as the irresponsible acts of chemical and drug companies (Rob Neis). Albert Donnay, of MCS R&R, who finally acknowledged recently that many diseases are involved, put forward a single disease concept for decades while sensible people (such as Mary Lamielle, and before her, Earon Davies) were trying to generate a sensible discussion about the wide variety of disease entities involved. Nowhere do people use existing mainstream references, such as the fact that the National Jewish Hospital, in Denver, was built using “Fresh Air Hospital” guidelines, more than 100 years ago. The Open Air School movement, designed to protect “delicate children” is never referenced. Instead, people base their arguments soley on the flaky ideas of clinical ecology.

    It is understandable that persons with chemical injuries accept the overly simplistic explanation provided by environmental medicine, but it is a mistake, a distraction.

    These distractions get in the way of efforts to make all physicians responsible for accommodating the fact that perhaps 15% of their patients have sensitivities, and that physicians have a responsibility not to harm such people

    Being unable to understand the arguments I am forwarding, which come from others rather than from myself, is not reason to attack me, or to slime me with expressions such as your last one. Eva’s approach invisiblizes information that should be important to her, and that is important to efforts to stop the unnecessary daily killing of more than 100 Americans (for instance) by physicians who are using debate about clinical ecology and environmental medicine to distract from their responsibilities. Forgive me, but I believe that stopping 36,500 preventable killings a year is more important than arguing about the tentative and arbitrary ideas many consumers are forwarding, or dwelling on even the most serious cases of people who are already diagnosed. If you want to know more about the deaths, see http://ages.ca/deaths and, for the US, multiply by ten.

    Saying that I write a “lot of words” on my site sounds like SNL’s version of Sarah Palin!

  • earthwalker

    January 15, 2010 at 12:29 pm

    Chris, I don’t think that I slimed you or attacked you personally in my response. I merely am expressing my frustration with your repeated dense-text arguments that don’t make much sense to me. If anyone attacks others, I would have to say you do. I have seen you attack people in the MCS community on Facebook before you left the site. People who are very sick but are out there using their limited energy to help spread awareness and make change.

    If you feel our efforts are misguided, rather than attack and point fingers and accuse people of “invisibilizing” the killing thousands of others with their ignorance, it would be more helpful to explain what you think should be done in concrete terms we can grapple with rather than abstract concepts and terms. We are all brain injured and I, for one, cannot follow your arguments and don’t have the ability to read dense texts or do the research you have said needs to be done.

    You say people have insisted that “individual susceptability is not as important as the irresponsible acts of chemical and drug companies”…on this site we do try to address all sides of the equation. That means chemical companies need to be accountable for their actions. I believe that genetics or “individual susceptability” as you put it, is mostly caused/determined by environmental toxic injury and poor diet. On the other side of it, we need to take personal responsibility for our lifestyle choices, and there are tons of practical things we can do to improve our health every day. This is the whole thrust of our site. So I am left confused by your accusations that I am “invisibilizing the daily unnecessary killing of thousands of people with undiagnosed sensitivities” – what exactly do you mean by that? How am I doing that? I am still so confused by your posts even though the last one provided more specifics.

    It’s just so unclear what you think should be done and how it should be done.

  • Chris Brown

    January 15, 2010 at 2:36 pm

    When someone says “Please enlighten me sir since you seem to think you have all the answers.” I consider it sliming.

    I have not criticized people personally, as you do, but have criticized what people are doing, here or on Facebook. People who carry a lot of pain are sometimes not able to differentiate between the two. Desperate people often band together and label those who try to get them to reconsider their approach.

    Sensitivities exist for a variety of reasons, including those you mention and as naturally occuring anomalies. The intensity with which you seem to avoid acknowledging that it is natural for many people to be born with sensitivities reveals an “essentialist” approach to thinking that interferes with your understanding of what happens.

    Physicians have a responsibility to protect patients whose health problems result from sensitivities, regardless of the cause of onset. While persons with sensitivities resulting from all causes are unnecessarily killed in health care, many advocates are placing an argument about the cause of onset ahead of, and in a way that obscures, the need to protect all persons with sensitivities from being unnecessarily killed in health care.

    The arguments you forward are important, but they should not be put forward in a way that eclipses 1) the natural occurance of persons with sensitivities and 2) the need to protect all patients with sensitivities, regardless of cause of onset, from being injured or killed in health care.

    Perhaps you find it a personal attack, but it seems obvious to me that the prevention of people with sensitivities, from all causes, from being killed in health care, is at least as important a concern as those you forward, particularly considering 1) deaths by adverse drug events are the fourth leading cause of deaths in America, and 2) the arguments, history and ethical concerns involved in protecting all persons with sensitivities also protect persons whose sensitivities result from a chemical injury.

  • Chris Brown

    January 15, 2010 at 2:43 pm

    PS If you spent more than 3:56 minutes at http://ages.ca you might get further. :-)

  • earthwalker

    January 15, 2010 at 2:52 pm

    Chris, I have never denied that people are born with sensitivities. That would be ridiculous to imply otherwise. However, I started this website because of my own experience with toxic injury, and that is the focus of the site. This should not take away from anyone else’s plight. You wrote “The intensity with which you seem to avoid acknowledging that it is natural for many people to be born with sensitivities reveals an “essentialist” approach to thinking that interferes with your understanding of what happens.” I really have no idea what you are referring to. What intensity are you referring to? All I said is that I personally believe that genetics/personal susceptibility is largely due to environmental toxic injury and poor diet. That is in no way denying that people are born with sensitivities. Raising awareness of environmental sensitivities and trying to educate health care professionals on the dangers of wearing perfume/cologne, using toxic synthetic cleaning agents, etc. should help everyone with sensitivities, not just those who developed them from toxic injury. My interest is in doing the right thing, which is why I am even engaging with you in the first place. Yet you seem to want to argue, make personal attacks, tell me I’m wrong and you are right, etc. I’ll say it for the last time: please spell out what you think we are doing wrong, and how to right it. Otherwise move on because this is feeling highly unproductive.

  • earthwalker

    January 15, 2010 at 3:06 pm

    Chris, regarding spending just a few minutes on your site today, you know that I have spent time on it previously, from past discussions we had on Facebook. It is still very hard for me to read through it in the format you have and I just don’t process that type of information well. The best page to me is http://ages.ca/content/provincial-and-territorial-issues however using the term “sensitivities” sounds very nebulous and to the uninformed won’t mean anything. It would be good to define what you mean by the term “sensitivities.” I’m not sure what you want from me or Eva or anyone else working to spread awareness while trying to managing a debilitating illness day to day. It feels like you just want to argue and blame. I think we are all on the same side and rather than cause confusion and engage in circular arguments, it would be much more helpful if you could be specific and concrete about what you think we are doing wrong and what should be done instead. Repeating yourself over and over without providing further clarification and examples will get us nowhere.

  • Chris Brown

    January 15, 2010 at 3:39 pm

    I share your orientation that the most important thing is “what do we do?”

    Perhaps I was misled about your position concerning the natural occurance of sensitivities when you said “I believe that genetics or “individual susceptability” as you put it, is mostly caused/determined by environmental toxic injury and poor diet.”

    Perhaps I was misled about your focus on less important things than the unnecessary killing of persons with sensitivities in health care when you focus on “trying to educate health care professionals on the dangers of wearing perfume/cologne, using toxic synthetic cleaning agents, etc. should help everyone with sensitivities, not just those who developed them from toxic injury” (even as I completely agree that these issues are helpful.)

    And perhaps I have been foolish to assume that when I list a series of abuses, implicit in that list is the need to stop these things, i.e. I feel we must work to bring an end to the abuses, with an emphasis on the worst ones, using long-existing mainstream medical arguments rather than exotic theories you have taken great pains to distance yourself from, i.e. I see that you do not share the narrow mindedness of the cult of environmental medicine, at least as it is expressed in Canada and by some Americans.

    I was quite struck by your person on FB, and I do not doubt for a split second that not only do you want to do good, but that you do good. However, across North America, and now in Spain, there are people, and I am prepared to accept I may be mistaken to think that you are one of them, who place an acceptance of the MCS disease entity paradigm ahead of the protection of persons who have sensitivities, ahead of learning about the actual history of persons with sensitivities, ahead of stopping the abuse of children with learning and behavioral disabilities, of women in eating disorder clinics, of psych patients with undiagnosed CNS reactions, BASED ON EXISTING MAINSTREAM MEDICAL HISTORY AND ARGUMENTS instead of on the less secure assertions of environmental medicine. Please note that my initial criticism, the beginning of this thread, was not directed at you; it was about the singularity of Eva’s approach, which has shown up in various places.

    What should we do?

    1) Adopt paradigms, positions and public statements that include ALL persons with sensitivities

    2) Insist on the inclusion of the most serious and widespread abuses in discussions with authorities. Talking to authorities about the marginalization of persons with sensitivities without mentioning that thousands of people are unnecessarily killed by preventable acts of commission in health care is like talking about the situation faced by women and not talking about spousal homicides. It is obscene. (On this point, I confess I have developed a revulsion based on Canadian MCS advocates and their cowardly evasion of the more serious issues, so that they can go to work without getting headaches. It is not an honourable betrayal.)

    3) Refuse to participate in discussions about how many antibodies can dance on the head of a pin, i.e. the “medicalization of disability.” Persons with sensitivities experience repeatable controllable circumstances, should not be subjected to a reverse onus in clinical medicine, public policy discussion or the courts. The onus is on the detractor, not on the person.

    4) Use the inclusive term, “environmental sensitivities” instead of creating artificial, undifferentiable subgroups about which abusers can sustain an endless argument. Name me something that is not a “chemical.” Persons with “chemical sensitivities” are as likely to have problems with wood smoke or mold. Or milk. Or wheat.

    5) Stop implying that sensitivities are new, that they were discovered by doctors of environmental medicine.

    6) Learn about how the meaning of the word “allergy” changed when IgE mediated reactions were identified in 1967, how it used to have the same broad meaning as “sensitivities” has for us now, that doctors of environmental medicine did not discover something new _after_ allergy was discovered but that chemical sensitivities have always been known about.

    7) Learn about the mainstream medical and scientific history of sensitivities, including Razi, Benjamin Rush, Thomas Story Kirkbride, and others, so as not to be locked into the marginalizing paradigms put forward by some doctors of environmental medicine.

    8) (follows from 3) Use disability and human rights laws to forward concerns, instead of endless medical arguments.

    9) Acknowledge in positions and statements that it is perfectly normal that some people are more susceptible to incitants and chemical injury, and that this acknowledgement _strengthens rather than weakens_ arguments about responsibilities concerning noxious chemicals, including pharmaceuticals and other agents.

    10) Portra health care as being perhaps the most important part of the environment, instead of treating it as a sacred cow. Again, this point stems from my revulsion for Canadian MCS advocates who put the banning of perfumes in hospital ahead of the protection of patients from ADR’s.

    11) Express concern for the large groups of people in high risk gorups who are being abused by various institutions, such as children with consequent learning and behavioral disablities in schools, women in eating disorder clinics, psych patients with undiagnosed CNS reactions, and _do so without making the cause of onset an issue_ because that can be argued forever, and because it raises issues of liability that are less important than protecting those persons.

    12) Do not allow persons with sensitivities to be instrumentalized (or “repurposed”) by others, to prove their favourite theories of complementary medicine, to prove that the modern environment is getting worse, to prove anything at all.

    These are just a few ideas. Are they the kinds of things you were asking for?

  • Chris Brown

    January 16, 2010 at 4:45 pm

    BTW, here’s a really really great film by the person who inspired me to try to use video as a tool for social development –

    http://www.collectionscanada.gc.ca/women/002026-704-e.html

  • Chris Brown

    January 16, 2010 at 6:20 pm

    Sorry – wrong URL. This is a video about some subversives with disabilities – Here is the correct URL

    http://www.nfb.ca/film/shameless_the_art_of_disability

  • earthwalker

    January 16, 2010 at 8:10 pm

    Hi Chris,
    Thank you for the great movie link! I will feature it on Planet Thrive. I want to respond to your last post above, but I am not feeling well so will revisit it in a few days. The list you gave was great. There is more I want to discuss. For starters, can you define for me what sensitivities you are including when you say sensitivities on your website? Thanks! Julie

  • Chris Brown

    January 17, 2010 at 3:24 am

    “Environmental sensitivities” was adopted by Canadian consumers and authorities in the 1980’s to include everyone who reacts to any physical phenomena or substances at levels that do not affect the majority. We adopted the term because it is inclusive, because it gets around the problem of arguing about the compendium of mechanisms by which people can react.

    It was adopted by consumers who wanted to distance themselves from the flaky assertions and revisionist history provided by doctors of environmental medicine, who were then calling themselves ‘clinical ecologists.’

    (Unfortunately, people in the cult of environmental medicine have tried to appropriate the term, and use it as if it applied to various arbitrarily defined sub groups. The people who do this tend to be neophyte activists who have been under the influence of doctors of environmental medicine, who place an acceptance of their theories and practices ahead of the well being of patients, and who manipulate desperate consumers so that they, too, place the cart before the horse. Such people are like sorcerer’s apprentices, who do not understand the harm being caused while they argue about arbitrarily defined and undifferentiable sub groups.)

    So, all physical sensitivities are included, whether they are caused by nutritional deficiencies, chemical injuries, or are naturally occurring anomalies. The point is not what caused the problem, which for most people and even for prevention, is a distraction. The point is that people react to repeatable controllable circumstances.

    This is a very different point than the cause of onset. The cause of onset might be a single event that no-one wants to repeat, and it is a separate issue, legally and practically, than the fact of reacting.

    Similarly, sensitivities are different than chronic fatigue or FM, legally and practically, in that chronic fatigue or FM do not consistently happen in reaction to repeatable controllable circumstances. This is one reason why it is important to discuss those problems separately. It muddies the legal and practical concerns around sensitivities, i.e. the right of a person to report their experience of repeatable controllable circumstance without being subjected to “arbitrary interference,” without being subjected to a “reverse onus” in clinical settings, public discussion, or by the courts.

  • Chris Brown

    January 17, 2010 at 7:50 am

    I left out “disease” as a cause. So: People with environmental sensitivities are people who react to EMF, light, heat, noise, and substances at levels that do not affect the majority. Any system of the body may be affected. Sensitivities may be facilitated by nutritional deficiencies, chemical injuries, disease or naturally occurring anomalies.

    The most reliable means of diagnosis, which is encouraged in professional training modules provided by the Ontario College of Family Physicians, is a detailed patient history. This history may involve patient journals and removal-reintroduction testing. The patient history is a publicly insured method of diagnosis everywhere in Canada, and a 1985 Ontario Ministry of Health report identified it as an existing means of diagnosis of environmental sensitivities. (see attachment at http://ages.ca/content/thomson-introduces-accommodation-guide-comments-officialdom-backsliding-protections

    It is unethical for physicians to subject their patients to a reverse onus if the patient is relating his or her experience of repeatable controllable circumstances, just as this is unethical throughout society and law.

  • Chris Brown

    January 17, 2010 at 8:17 am

    Did you know that in 1812 the Father of American Psychiatry had a word for “offgassing?” He called it the “exhalation of substances.” He was Benjamin Rush, and he was a co-signor of the Declaration of Independence. He studied the effects of odours on mental illness in Scotland, France and Philadelphia.

    It is also very interesting to read the ventilation requirements for “hospitals for the insane,” as described by the President of the organization that became the American Psychiatric Association, Thomas Story Kirkbride. Consider his group’s recommendations concerning ventilation and the mentally ill:

    http://ages.ca/content/ventilation-mental-hospitals

  • earthwalker

    January 18, 2010 at 8:43 pm

    Chris, I want to have this conversation but I’m afraid every time I reread your posts in order to respond, I get exhausted. I just don’t have the mental energy to do it in entirety. If you read our mission statement, you’ll see that the focus of this site is to help people manage illness caused by environmental toxicity. This includes “sensitivities” but is not limited to them.

    I have tried in many of the works I’ve put online to include ALL environmental sensitivities when talking about sensitivities – sun, mold, chemicals, EMFs, sound, vibrations, energy, etc. You point a finger at Eva and others saying they are helping to “invisibilize” the killing of thousands of people. But to ignore the CAUSE of illness for so many – toxic chemicals – is to also invisibilize and/or facilitate the maiming and/or killing of thousands, even millions, of people.

    The message I am getting from your writings above is that you are angry that MCSers are focused on reducing the chemical poisoning that goes on rather than on getting accommodation of illness. Is this correct?

    One major roadblock I can see that is hindering your objective is that your communication tactic seems to be one of attacking and blaming others. Don’t you think it would be more productive to approach people with an arm outreached rather than finger pointed in their face? If instead of attacking Eva, you said something like “Eva, it’s wonderful you are publishing a book and being active etc. etc but there are a few things I want to discuss with you because I think it would be beneficial to our shared cause” – you get my drift?

    I suspect that there are things to learn from you and I am very open to learning them, to use more inclusive language, to add to our focus, etc. But it also seems to me that you need to take in our perspective and point of view more. Try to imagine you were a healthy working person and in your mid-30s or 40s you were poisoned by chemicals that are approved by your government for use and your life became a living hell. I can go on and on but the basic thing I am trying to say is that I don’t get the sense you are willing to look at our point of view and only see your own.

    I don’t want to get in a pissing match with you. I really just want to understand what you are trying to say, what is needed that is not being done, etc. You need to keep in mind that most MCS activists are very sick, are dealing with major life challenges day to day and only have so much energy to devote to this sort of thing.

    On another note, the movie about disability that you shared above was great. I am having a live chat discussion about it on Friday at 9pm EST. Hope you will join us.

  • Chris Brown

    January 18, 2010 at 9:25 pm

    Issue One: Q: “The message I am getting from your writings above is that you are angry that MCSers are focused on reducing the chemical poisoning that goes on rather than on getting accommodation of illness. Is this correct?”

    A: No. That objective is an important one. What is of concern is that people eclipse their own history while they do it, and they invisibilize the unnecessary killing of other people with sensitivities. It is not which issue is most important. It is finding a way to forward the chemical injury issues that does not invisibilize other issues.

    Issue 2: Q: “One major roadblock I can see that is hindering your objective is that your communication tactic seems to be one of attacking and blaming others.”

    A: It is hard to criticise people without criticizing them. :-) There are precious few people who have “graduated” from the environmental medicine approach, (Perhaps Bruno is one, above) who understand that a compendium of disorders are involved, even within the group that identifies with the MCS paradigm, that sensitivities, including chemical sensitivities are not new, etc etc, who can help address the mob who are trampling people underfoot….the same way people with IgE mediated reactions trampled other people with sensitivities under foot in the last few decades of the last century. As you probably know, it is desperately frustrating to be surrounded by people who do not know their history, and whose activism damns us to repeating it.

    I confess I have been severely hurt by the manipulation, by doctors of enviromental medicine, of Canadian consumer groups. There are many people with sensitivities who will have nothing to do with the main groups, because of the way they have been manipulated by doctors of environmental medicine into putting the acceptance of questionable treatments, or treatments that only work for a minority of people, ahead of the protection of people. My big issue is protection, and the arguments put forward by Canadian advocates have betrayed a lot of people to their deaths. They have not responded with your ability to discuss, but only with lunatic assertions that move the issue backwards. I confess it has left me with very little patience for any other people, let alone persons with sensitivities, although this has been improving greatly in the last year or two.

    I am very hopeful when I see more sensible sites, like yours, like Mary Lamielle, like David’s in Edmonton, like the ewg. But a large portion of people with sensitivities are being left behind, and they are being left behind because of arbitrarily defined disease concepts. In their desperation, and in their lack of skill, physicians and consumers are trying to define single disease entities that do little except create pointless arguments in officialdom, arguments officialdom can use to delay or dismiss concerns about people being killed by ADRs, or by chemical assaults.

    People say things such as “The typical progress of this disease” which is just a silly thing to say, because we are not talking about one disease, unless we are shutting out most people with sensitivities. No one disease concept covers a majority of patients with sensitivities. It may sound petty, but this and many other similarly unhelpful ideas add up to blockages in policy development, especially in the area of protecting people with sensitivities from being hurt, or from being further hurt, if you like.

    It is not the case with you, but there are dozens, probably hundreds of activists that many of us old timers just can’t talk to. Toronto is a repository of absolute silliness on the subject, where even public agencies who promote the interests of persons with sensitivities are hiding the unnecessary killing of persons with sensitivities in health care. It all looks like a rear guard action disguising itself as helpfulness, as smaller issues are dealt with while major issues are invisibilized.

    There are people who understand what Bruno is saying when he talks about “old school environmental medicine” as something different from what consumers are fowarding these days, but they will have nothing to do with organizations in Canada who represent persons with sensitivities, because those persons see and understand only the paradigms put forward by the cult of environmental medicine, and not the broader field of mainstream knowledge about sensitivities, etc.

    I hope that people like David Tywoniuk exemplify a new kind of advocate, who will understand that by including all kinds of sensitivities, and including the actual history and not just the last ten years, who will learn how a broader understanding helps everyone.

  • Chris Brown

    January 19, 2010 at 6:10 am

    Julie – I think I am just going to crawl back in my hole, and let the mob do what they will to each other.

    There is a story about what to do when there are 100 rats living in a cage made for ten. Various people argue about various approaches, until one suggests letting the rats figure it out for themselves. Perhaps that is the wisest approach for me, as I have such difficulty dealing with the pain I feel for the fact that Canadian MCS advocates undid years of work getting Health Canada to act on the issues, contributing to tens of thousands of deaths by putting the acceptance of flaky ideas ahead of protecting people on the basis of long-existing medical knowledge and very basic clinical ethics.

    I realize that my messages on this page are really just an expression of pain about these thousands of deaths, and about the vilification of persons, including myself, who have not subscribed to the narrow, revisionist version of events put forward by the cult of environmental medicine.

    Last night I talked to another person with sensitivities in Ottawa, a lawyer who has experience with the self help groups. She helped me realize that desperate people are going to betray each other, that they act like those who are creating the violence in Haiti these days after the earthquake. As she said, after also trying to help MCS advocates understand how they are sabotaging themselves and others, “You just can’t talk to these people.”

    I’m sure you will help many people. You run a great site and I like your instincts. I am not the person who will convince the MCS crowd of how they are helping to get people killed. It is time for me to withdraw and focus on fleshing out some history at http://ages.ca and not try to convince other people of anything.

    You might get a kick out of one of my other sites, at http://pastthetippingpoint.ca

    My experience with sensitivities tells me that global heating is not going to be dealt with except in relatively meaningless ways, and that the people affected are going to do in themselves and each other. By the way they pick priorities, people with diagnosed sensitivities are betraying people with undiagnosed sensitivities to their deaths.

    Every once in a while, as on FB, I foolishly think maybe that other consumers will be able to see how they contribute to the abuses listed at http://ages.ca/node/48 and then, each time, I realize that between their desperation and my pain, it is not going to happen.

    I’m sorry, but I just can’t deal with it, and I need to focus on documenting a broader picture and a longer history, and not try to convince people by approaching them directly.

    All the best to you! The Independent Living Center approach is a good one!

  • Roxan

    July 3, 2010 at 1:48 am

    Thank you for your website.

    In the U.S.A., people with MCS don’t fare too well either. Our MSM (Mainstream Media) is rotten to the core of its black soul….Dean Edell and John Stossel weren’t helpful to our cause either.

    Also curiously, I’ve written a few “environmental” groups about this and typically, they didn’t answer regarding MCS. I thought that was rather strange.

    But now, it’s really bad when the conspiracy sites of: ALEX JONES and JEFF RENSE completely ignores the subject of MCS as well.

    I’ve tried writing JEFF RENSE twice and ALEX JONES about 3x now, to no avail. Now, that’s pretty bad, when they refuse to acknowledge MCS as well.

  • Roxan

    July 3, 2010 at 1:50 am

    I’ve also got to wonder at this point, whether Ft Detrich had anything to do with MCS. Who knows?

  • jean

    July 9, 2010 at 6:23 pm

    As someone who also fell of the face of the earth, 15 years ago and am trying to climb back on, I may have a suggestions for those with clothing trouble. I have found if I soak natural fabric clothing in a mixture of liquid bentonite and filtered water overnight it usually removes the residue from dyes and sizing. I then wash the clothes before wearing to rinse out the bentonite and what it has attracted. If you are unaware of bentonite, it is a liquid clay that absorbs chemicals. You DO NOT WANT TO USE THE DRY POWDER to do this. It will stop up your pipes. The liquid is usually found in natural health stores. I use the Great Plains brand or Veico 77. I found this just before my two outfits literally rotted of my back. Good luck.

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