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!

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.

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.

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

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.

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.

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

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

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?