Check out Episode 21 of The Chemical Sensitivity Podcast!
The title is “Putting Chemicals Back in MCS.”
Listen and subscribe wherever you get your podcasts.
This episode features a conversation with Varda Burstyn, longtime advocate for people with Multiple Chemical Sensitivity (MCS). Based in Ontario, Canada, Varda is also an environmentalist, writer, and has lived with the illness for decades.
You’ll hear Varda discuss her important and extremely well-researched report that she wrote with Maureen MacQuarrie in response to a 2021 paper published the Quebec National Institute of Public Health that claims MCS is an anxiety disorder.
Read the summary and report by Varda Burstyn:
"Putting the Chemicals Back in Multiple Chemical Sensitivity"
Quebec paper & summary
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Aaron Goodman 00:05
Welcome to the chemical sensitivity podcast. It's podcast that amplifies the voices of people multiple chemical sensitivity or MCS, also known as environmental illness, chemical intolerance and toxicant induced loss, tolerance or TILT. The podcast also highlights emerging research about the illness. I'm Aaron Goodman, host and founder of the podcast. This is Episode 21 and the title is Putting Chemicals Back in MCS. It features a conversation with Varda Burstyn, longtime advocate for people with MCS based in Ontario, Canada. Varda is also an environmentalist writer and has lived with the illness for decades. You'll hear Varda discuss her important and extremely well researched report that she wrote with Maureen Macquarie in response to a lengthy 2021 paper published by the Quebec National Institute of Public Health that claims that MCS is an anxiety disorder. I hope you enjoy the conversation and find it a benefit. We release new episodes twice a month, subscribe wherever you get your podcasts. Leave a review on Apple podcasts. It's a great way to help others learn about the podcast. Find us on social media, just search for the Chemical Sensitivity Podcast or podcasting MCS. Leave your comments about anything you hear on the podcast, and please share the podcast with others. The podcast is also available on YouTube, and you can read closed captions in any language you like. You can also support the podcast and help us continue creating greater awareness about MCS. Please find a link in the episode descriptions at ChemicalSensitivityPodcast.org. And if there's someone you'd like to hear interviewed on the podcast or a topic you'd like us to explore, just let us know. Get in touch with our team just email email@example.com and thanks for listening.
Aaron Goodman 02:20
Hello, Varda, it's wonderful to connect with you. Thank you so much for taking time to speak with me on the podcast.
Varda Burstyn 02:27
Well, Aaron, it's lovely to be with you. And I'm so thrilled that you've started this podcast, because in our community of MCS related people, both people who have it, and people who try to provide for an advocate and by that we have so few means of communication. And so few ways to publicize beyond academic journals, which most people just just don't read, the knowledge that is being acquired about it that you know, this new project of yours is very, very precious to our community. So thank you. And thank you for having me as a guest.
Aaron Goodman 03:05
Well, it's very kind of you to say thank you so much for your encouragement. Let's just lay the basic framework for our discussion today. We're having this discussion because the essentially there was a paper written in the province of Quebec that was very problematic product. Could you please briefly let us know what is the paper? Why did you decide to respond to this paper? Why did you feel it was something that you wanted to take on?
Varda Burstyn 03:34
The paper was released in June 2021, under the imprimatur of the National Institute of Public Health in Quebec, so under a very, let's say, authoritative imprimatur, which means that the more authoritative the paper is, particularly in MCS circles, where it's a contested illness with a lot of disagreement about it, it's that means that it has it carries authority just by virtue of who sponsored it. The three authors are well known in Quebec and beyond that it particularly in French language studies, but at least one of them Mary of Tremblay is also very much known and involved in English Language Scholarship and works in different parts of Canada as well as in as well as in Quebec. The paper is 850 pages long. It is a juggernaut. It is a monster. And the difficulty, of course for the vast majority of people is they're not going to read 850 pages and all the more so because it takes long excursions into extremely detailed deep dives into neuro chemistry and neurobiology and most readers would not find it at all possible even to follow many of the discussions, what they've done, and I find this extremely troublesome, is that they've taken this 850 pages and condensed it into four pages. They've called it an executive summary. But it's not. It's just, it's it does not go through the whole logical process and the different chapters and topics that they have done. It just presents readers with conclusions. And those conclusions are absolutely categorical. Now, in MCS studies, even in environmental health studies, we don't usually see such categorical conclusions, but they have basically claimed, we are the top people even though none of them has ever worked with MCS at all. And we have read everything there is to read also an untrue claim. And we've reviewed it all. And we know exactly what MCS is, and it is an anxiety disorder, full stop exclamation mark red neon around it. That's what it is. Thank you very much. I think that's an erroneous conclusion. I also think that's a very dangerous conclusion, because in every analytic stance is embedded implications for clinical programs for disability rights, for, let's say, public health policy and for research directions. And on all four of those fronts. This paper is a clear and present danger to people with MCS and to a broader understanding of MCS.
Aaron Goodman 06:32
Do you have MCS yourself?
Varda Burstyn 06:34
I for the last 20 years, I've lived with severe MCS before that I was able to with adjustments still carry on in normal life. And before, let's say for about 30 years before that. And in my childhood, I had MCS but everybody thought it was allergies. My origin story is is to do with pesticides. But layered on top of that would be both mercury and infections. So I do have MCS, my mother had MCS, we share the same genetic polymorphisms, we shared the same heavy duty exposures to pesticides. So it's something that I I worked on before by own crash into severe MCS, I worked on trying to develop analysis and care here in my province of Ontario, with my mother in the 80s and 90s. And we had some successes, then more than recently, but now now I'm living with a severe form.
Varda Burstyn 07:40
In 2008, I want to say I worked at the Environmental Health Center in Dallas, a leading clinic for people with MCS. And there, they tested me and found many, many, many underlying problems, including a primary gamma globulin deficiency, and immunoglobulin deficiency, they treated my chronic infections, and they topped up my immunoglobulins. And I got better by about 70% in four months. So I also spent a lot of time trying to understand all the different modalities that they employed, the diagnostics, the treatments, and I saw how much better I got and how effective some of these things were provided that were done. Right. So I've had the experience of amazing care for MCS. And I've also had a last mostly the experience of not amazing care, or no care for MCS here in Ontario in where I where I live. So that's me.
Aaron Goodman 08:36
The paper that you respond to, in your response, you identify five broad categories or areas that you respond to. And I'd like to invite you to, we'll go through those one at a time together. Because I think it's important for listeners to understand your argument, right? Should we start with the first one? And if I understand the argument first is that and as you said, Varda, the Quebec paper claims to be comprehensive. They say that they have the final argument or they have the final definition of this illness, right, that this is an anxiety disorder, they make that broad claim that that their claim cannot be disputed. So do you want to start there? Is that a good place to start with that claim? Or what? How do you respond to their claim?
Varda Burstyn 09:31
Well, in our paper, which is also not exactly a short take, the substantive part of our paper is about 220 pages. That's minus all the appendices and research to back stuff up about what we both explain and then show is that there's a great deal of research that contrary to the claim of comprehensiveness was not addressed in their report and funnily enough, the research that was omitted from their report is the research that shows the kind of pivotal issue around which they conclude that chemicals are not involved with MCS. And that anxiety is what drives MCS. Before I get into that, I'll just say that there's research which they omitted, which we have introduced, that was done prior to 2017, looks like they finish or maybe 19, in some cases, very incoherent report in many ways, but that they stopped collecting. So there's definitely research that was done prior to that, that they omitted, or they neglected, for example, research on what are known as TRP channels, trans protein receptors, we'll get to that in a moment. That stuff's been around for, I don't know, maybe even 20 years, long time. It was not in the report, except as a description, no analysis, and no discussion of the powerful hypothesis it provides for an MCS mechanism that was not there.
Varda Burstyn 11:13
But in addition, since they finished gathering their material, I think 2019 was the last date for the last chapter, because they were not written coherently and identically. There have been a number of other important papers published. And today, as we look at the conclusions of that report, we have to see whether an audit stands up to the most recent and the most important and the most kind of valid of the conclusions of where we are today. And there's a bunch of research that has not been included, and against which we can now measure what their conclusions were when they finished gathering and 2019. And we can say they don't add up, they don't match up. And so we also brought some of that research to the document, and did some analysis of both of the types of research in order to show that the case that they were making that MCS is not connected to chemicals, and is all about anxiety that that was wrong. That's how we went about it.
Aaron Goodman 12:20
I've taken a pretty close look at their reference list. There's a lot of sources that they cite, from my perspective, what I see is a lot of sources that are focused on anxiety, and panic, right? Is that a fair assessment?
Varda Burstyn 12:37
Yes. Yeah, it's a remarkable it's a remarkable reading list, because I normally would expect to see two types of types of references. One is more of the research, which I've just said has been left out, that's not there, and it should be there. And let's go sideways on that one more step. Which is to say that the same year, in July of 2021, Alberta released a literature review on MCS, that contained a bunch of the stuff that was not in the Quebec report. Okay, so it isn't just me saying this is you could you can find it there so much more on particular hypotheses on mechanisms of MCS, which we'll get to, and the other thing that I would expect to see is a lot more material from environmental health studies, particularly ones that look at neuro toxicity, because we know that MCS really very much affects the brain and the central nervous system, and that look at immunology, what are all of the ambient chemicals that we live with? Which ones in particular harm our immune system, because we also know and I think we know this now that MCS involves both the nervous system and the immune system. And there's a tremendous kind of really important trove of studies in environmental health, that shed light on these two areas. And I would have expected to see much more from those two, as well as from the field of MCS studies.
Aaron Goodman 14:17
Right. So they've mostly neglected sources from environmental health, and studies that focus on MCS, I also looked at the external reviewers or they had a committee assembled of of external folks who maybe they consulted or asked to read the paper before was published and if I'm not mistaken, Varda, those folks, none of them come from environmental health or specialize in Multiple Chemical Sensitivity. They are experts in anxiety and psychiatry and panic as well. So that struck me is problematic as well, but let me just before we dive deeper into your analysis of their argument, let me just ask you if I could, Varda, Is it fair game to unpack ideas to critique ideas in the public sphere? As we're doing now? Do you have any reluctance in any way? In any sense to do that? Or do you view it as maybe an obligation? Or obviously you felt motivated to do this? But was there ever any sense of maybe they'll be offended? Or maybe there's a risk in critiquing other's ideas did that ever come to mind for you, when you embarked on this journey?
Varda Burstyn 15:45
Let me start with that and work backwards to some of your other points that you made. And then we'll come around again, I did not want to do this document. I'm 74. I've been trying to retire from work on MCS for five years. And I keep not being able to because things happen, for example, things are written or decisions are made at, you know, the provincial level where I've been active trying to bring about care things happen, and make it hard to leave. But I did, I absolutely did not want to write this paper. But somewhere in my head, I feel obligated. And I waited for MCS doctors to respond to it. I waited for other advocates to respond to it, but nobody did. Well, John Melosh, an environmental health physician in in Toronto did, briefly. And he also published with some other colleagues good paper on parallels between the MCS process disease process and neurodegenerative diseases. And we used references from and unpacked his work in this document, but it was very kind of narrow and technical, and not widely distributed. The kind of response that we have done me and my collaborator, Maureen McCory, we are waiting for that it didn't happen. So finally, we decided to do it.
Varda Burstyn 17:09
There is always a fear when you are tackling the medical establishment, and the chemical industry because we take that head on, that they're going to come after you. Of course, there is certainly the vicious persecution of environmental doctors from the 1990s, even to the present in many contexts, but that from the 1990s to the 2010s. It was really very bad. And many were driven out of my province of Ontario, many were put out of business. This has a chilling chilling effect, it tells young doctors, they should not do environmental medicine, they should not touch MCS patients. You can't get money for MCS research in the academy. So there's always this fear that you're going to be punished for speaking the things that that you speak. So yes, I felt those things. But you know, to link that answer to your previous question about do I feel there was an intentionality behind the way this document was constructed? And do I feel that there was a pre existing purpose or conclusion into which the research was either validated or ignored? For example? You know, I'm not going to answer that straight on. But what I'm going to say is this, when you look at the references that were used, when you look at the people who were involved, when you look at the fact that particularly in MCS, clinical practice diagnostic and treatment procedures, they're not widely written up like they are in cardiology, and that you have to go to MCS doctors, and you have to go to MCS patients, if you want to actually come up with a definition, which is what these authors claimed to have done. You have to include the clinical experience, you have to include the patient voice, and none of these was included, plus left out the pieces verse, which we're going to talk to talk about in a minute. So it is a very carefully curated piece. So if you look at all of all of what's in and we'll all of what's out, you know, the pieces of research that they decided to validate and to incorporate and to engage with the experts they brought in and the experts they left out it is a carefully curated effort. How much that was intentionally to disprove the chemicals are related to MCS. I will not opine on directly. I will just point out that there is curation involved. There is an absolutely conscious process of choice that is made and people should be able to read into that choice what they think it expresses
Aaron Goodman 19:59
Has there been over time, let's say over decades, a concerted effort to silence people like you? And you're not alone over the decades, others who've written about chemical sensitivity, trying to point to the mechanism that there is an association between the illness that we have, and chemicals, has there been an effort to silence you and others?
Varda Burstyn 20:26
In our response, which is called "Putting the Chemicals Back into Multiple Chemical Sensitivity", we have two sections, in which we actually provide historical accounts of means to silence or shut down, particularly researchers and physicians, and patient advocates who claim that chemicals and MCS have something to do with one another, we have a kind of very short political history. And the reason we do that is because if you take a look, for example, at the funding for other product, complex diseases, like myalgic, encephalomyelitis, chronic fatigue syndrome, or fibromyalgia, which are also like MCS, they're complex illnesses, they involve multiple systems. You see, they're not greatly funded. But you know, MCS is not funded, but in mainstream places except for San Antonio now, and and we just don't can't get any money. There's a phenomenal difference. And so to understand why there is much less of the research on the promising analytic frameworks that explain different mechanisms that are involved in MCS, because it's not one mechanism. It's a number of interacting mechanisms that I am convinced, you know, to explain that you have to understand how the research agenda has been shaped by a set of forces. And the most important set of forces is the chemical industry. And in our we have an appendix to the document, with an article by a doctor Anne McCampbell, who goes through all of the funding to different institutes that were set up basically as front organizations, but research institutes that by the chemical industry that churns out documents that were meant to discredit, dispute and discredit articles by researchers arguing for the chemical connection. So if people want to learn more about that, by all means, go to our paper, look for the section on politicisation and look for that particular appendix. There's a very long history of that many doctors who would like to work with MCS patients know, and researchers, including people at Harvard, they've said it's a career killer to touch MCS. So I don't want to take all of our time today to go I mean, I could we could do two three shows on this subject alone. But yes, it was very much that case. And then there's the discrediting of people like me, and I'm not a PhD or an MD I ended up here, because I had to not because I wanted to, but you know, doctors, basically they're described as quacks as doing iatrogenic, or physician induced harm as people who exploit and take advantage of patients. I mean, we're not doing any character assassination with respect to the Quebec authors, but anti MCS forces have done phenomenal character assassination with respect to environmental health practitioners. So you know, it's a double standard there for sure.
Aaron Goodman 23:46
Before we go on that research, though, does exist, right. Like you mentioned, Dr. Anne McCampbell. I don't know, in this moment, whether she was cited in this paper, but there have been there are a number of others. For example, Dr. Claudia Miller, who at you mentioned the Hoffman TILT program, I'm not sure if if Dr. Miller was cited or Dr. Anne Steinem in in Australia, among many others, who've done very credible research about MCS, right.
Varda Burstyn 24:17
Anne Steinman was was cited I think once but not to any great degree because the thesis of this report is that chemicals have nothing to do with MCS and and Steinman's thesis is that chemicals have everything to do with MCS so I think they did one of her prevalent studies you don't kind of like on pasong. But you know, they didn't go into it. Miller's work not discussed at all might have been cited but not discussed. Just like the work on on on the TRP receptors. A paragraph was devoted to explaining it. This has been put forward as a really plausible mechanism for MCS reactivity by many physicians now over the last 20 years it was cited but left behind unengaged Miller's work and masteries work may be cited but not engaged in any way, shape or form, in fact, effectively dismissed because there's a commonality with the people that you have just mentioned, a commonality in understanding that there is a lot of toxicity involved in the everyday chemicals that were exposed to, and that over and above that in occupational settings, some of the chemicals are really extremely toxic that these can bring about sensitization and then continue to trigger sensitization. That is the common basis for what we could call the biophysical toxicological School of MCS. On the other hand, there has been this psychological School of MCS with you know, it's great writers fellow called Stoddard Meyer, who is a psychologist who teamed up with a number of other doctors in the 90s, including an allergist immunologist from Toronto called Arthur Lesnoff, who was just a rabid anti MCS was all about it being you know, MCS, people were traumatized from childhood, and they were sexually abused. And this is really what it's all about. Of course, if you going sideways for a minute on that hypothesis, if you take a look, which we do in our document at the level of trauma, in the general population, at social determinants of health, things that make people unwell, personal trauma, and so forth, you see that MCS and the general population much the same. So, you know, we try to dispute a lot of these, a lot of these things. But the point is that the work that you say is out asking me is it out there? Yes, it's out there, read our document, you'll find lots of references and explanations for some of the most important pieces of what's out there it is there, but the project of the INS PQ report, as to to Nasional de Public Sante report on MCS was to discredit that research and to say that it's not valid, and it does not hold any water.
Aaron Goodman 27:13
I look forward to hearing more about your arguments how you respond to their claims, the author's claims, but one of the other issues I wanted to raise with you, Varda, is the authors of the Quebec report. Also, as far as I know, they didn't attempt to talk with anyone who has multiple chemical sensitivity. So there's this saying that many folks will be familiar with nothing about us without us. Nothing about us without us. And to me, I found that particularly offensive, that people would write a literature review. Okay, maybe it's a literature review. Butdoes that prevent them from picking up the phone or inviting a discussion with the community who have the illness. Because to me, that, to me is a fundamental problem. How do you see that?
Varda Burstyn 28:08
Yeah, first of all, best practices today in other areas, and particularly, we look a lot to me, and we've written a chapter about me, myalgic encephalomyelitis, or used to be called chronic fatigue syndrome, but in other diseases as well, where not just definitions, but also then the development of clinical guidelines is an ongoing process. The best practices are to involve patient experts, because it's been acknowledged now that if you don't have that, experience, that perspective, in the work that you're doing, you're going to miss out extremely important things. So that is understood. And that's one of the issues we take up in our critique of this is that they don't do that. Where things get just weird sometimes is that, you know, on the one hand, this was called a literature review. So if you're doing a literature review, you review literature, and in this case, they reviewed some literature and not other literature, as we've just said, but there's not a lot of literature on patient experience in MCS, however, there is some and it's important, and we have listed it the stuff that we know in a particular you know, subsection on the patient voice, and in particular, in Canada next door to Quebec in 2012 and 2013. We did a really important qualitative needs identification study with people with MCS, ME and FM in Ontario, which provided a very rich, rich resource of information about patient experience, including with doctors with the health care system, what their life was like? It turned out to be a spectacular catalogue of stress, the kind of stress that people have to live with new stressors after they get MCS. But it's a very, very rich resource, the patient experience it wasn't even mentioned, not even mentioned. And so there was a decision again, that's why I use the word curated, there was a curation of what was to be in or out. The thing is this that on the one hand, they talk about doing a literature review, and if there's literature that contains the patient experience, if they don't know where it is, or if they refuse to include it, okay? It's not in the literature that they review. But if, on the other hand, they say that they're going to come up with a definition of the mechanism of MCS, the mechanism, as opposed to the mechanisms. But if they're going to do that, that's not a literature review. That is actually the spelling out of key hypotheses about the mechanisms, the causes of MCS, and that cannot be done just from a literature review. It has to include clinicians, and it has to include patients. So do I share your criticism in that direction? Absolutely.
Aaron Goodman 31:19
Thank you so much. The other thing and there's there's so much that's really interesting, and I feel it's important to talk about before we dive into your your response itself, when this paper was released, the Quebec paper, a lot of people who have MCS were kind of shocked, were pretty shocked. And a lot of people were really upset about it. How do you view that? Have you heard from people who have MCS and what have you heard from them? And was that part of your motivation for responding to the Quebec paper?
Varda Burstyn 31:50
There may, for all I know be an English translation of the paper, which is given out by the authors to certain individuals, but at least the public version is that it's only available in French and that means that most of the readers you know, most of the readers of the of the paper are francophones. And that means that most of the readers in the can North American context of this paper are people in Quebec, people in Quebec, read this. And Quebec has, I would say, Canada's leading environmental health association, MCS grouping. And so they made this known because they've been pushing to have a literature review and some definitional process from the Quebec government well, since 2010, and when this came out, people read it now how whether they read 848 pages, I doubt, as I said, not only the length of it, but just some of the like excursions into neuro chemistry and neurobiology, which no patient or parent, or for that matter, I would suggest even primary care physician is going to be able to follow but everybody read the executive summary, everybody read the blunt delivery of the verdict. MCS has nothing to do with chemicals. It's an anxiety disorder, and people were completely freaked out. And rightly so they'd waited eight years for this literature review, which in itself was disgusting, that it should take that long to do a literature review, total contempt expressed by the authorities to take that long and then to come out with this, you know, Jan's opaque, very problematically composed document. And again, you know, there's 12 chapters, each one was written by a slightly different group of people, each one's period of collection of research was deferred by sometimes two years, there was not like a real through lines across the chapters, it it's a hell of an of a thing to read. And so there's a lot of built in barriers to reading the actual content of the report, and grew up being able to grapple piece by piece with the argument or the people who are bringing the argument. So instead, you're faced with this four page sledge hammer, which you know, for if you're a person with MCS, and you're trying to explain to your family that this is not because you're neurotic, and can't come to terms with your ability, you know, lack of ability to cope in the world, which is more or less what this says, which is also more or less exactly what the chemical industry said in 1990. In a document we have reprinted in full in our appendix in the in the in our document, but if you're trying to explain what this does to your family, and here's this authoritative four page piece from from the INS PQ, it's horrifying. It's horrifying. So people were incredibly upset. The association was incredibly upset. I think they were just inundated with fearious letters, people were very, very upset. And skipping ahead to the fifth point of the of the five points that you had opened our conversation up with. Our fifth point is that not only is MCS a somatoform disorder, an anxiety disorder, so and somatization of you know, an anxious state, but so is myalgic encephalomyelitis/chronic fatigue syndrome, so is fibromyalgia, so as PTSD, so it's a whole bunch of other things, there's sort of a basket into which they've put a whole bunch of illnesses or diseases, some of them are classified as diseases that have been contested, but which research in the last, especially the last 10 years has come more and more and more to showing our biophysical diseases. So they didn't just throw us into the psychological, you know, sort of wilderness. They did that to a whole bunch of other people as well. And this is also extremely consequential because this goes against it goes against all of the findings in this long process I've been involved in Ontario, it goes against the findings of the Alberta literature review. And it goes against the findings and the funding decisions of the National Institute of Health here in Canada, which some years ago, like two or three found a million dollars at long last to fund me research. And it's basically on the basis of the biological vital physical analysis of it. And this is also true, the massively important report that came out in 2015, from the then Institute of Medicine, now incorporated into the National Institutes of Health in the US, which said me is definitely a biophysical disorder, and EMI is clinically indistinguishable from a lot of long COVID. Clinically indistinguishable. It's a post infected, usually a post viral disorder, and many, many, many of its key indicators are exactly the same as me. So that's a whole new thing. And we've written a new preface to our document to address that issue.
Aaron Goodman 37:12
The paper came as a shock, it was very upsetting for a lot of people with multiple chemical sensitivity, because you mentioned, a lot of people are met with disbelief by their families, but we also struggle to find doctors who will treat us with respect and diagnosis. And we also across North America and around the world, and we also struggle to get accommodation in the workplace and at school. And we also struggle to get housing, right accommodation. And so, there are a lot of areas that are critical that people with MCS struggle with, right, because we're often told that it's just in our heads that MCS is a made up illness, that it's a neuro it's a psychological disorder. And that's very upsetting for people, right? I've experienced that.
Varda Burstyn 38:08
It is very upsetting because if it were, then we could use modalities in psychology and psychiatry, we could use those to help ourselves, but they don't work. So to be told that it's quote, unquote, in your head, meaning you have an emotional, that's what psychological means an emotional difficulty and yet not be able to find any modalities to help that. And for that to be an excuse not to develop the modalities that do help you it is extremely distressing. And you talk about struggling to find doctors, well, we can't find doctors in Canada. And while it is a problem around the world, the Canadian situation is exceptionally bad. If you're in the US, you can find a doctor I mean, you have no money, it's very hard. But there are doctors that can be found. In Canada, most places, no doctors, no doctors,
Aaron Goodman 39:03
No doctors, and we know that some people are choosing medical assistance in dying. Because that is unfortunately happening.
Varda Burstyn 39:13
It's happening and that is how especially among people who can't afford to maintain a safe residence away from cigarettes, mold, cleaning materials, building materials, and so life becomes literally hell, a physical hell with neurological symptoms. And our you know, bringing the word neurological in I think is helpful because MCS has very serious neurological consequences and among the neurological reactions that people like us have to chemicals we have for example I become impaired in terms of speech and cognition. I become mobility impaired I lose muscle strength in my lower back and it makes it hard to walk if I've had a very bad reaction. So neuromuscular, cognitive, etc. But also it affects the limbic system, the amygdala. And so I will feel this kind of biological depression. And this can bring with it also anxiety. So it isn't as though anxiety is not part of the picture. But truly the big question is, is it a cause? Or is it a result. And the anxiety resulting from MCS can come from two forms, one, it can come from the actual biophysical blow to your neuronal pathways in your brain. That's a biological depression. And it can come afterwards, when you start to live with this and find that your life is a complete, it's disaster, incredibly hard to live in so many ways. And we have a very careful analysis of our report that shows all the ways that it's difficult, people get very depressed thinking, how am I ever going to cope with this, and then if they don't have the financial means to have a safe place to live, more and more people are choosing to die.
Aaron Goodman 41:06
And Varda, If we go back to the one of the arguments, the core argument of that Quebec paper that you respond to is they are say, right, that chemicals are not the problem and your paper, as you know that the title of your paper is "Putting Chemicals Back in Multiple Chemical Sensitivity." I don't think chemicals ever left, but you're making it clear that chemicals are the problem. And so could you just perhaps briefly walk us through what their false argument is? They're saying that it's not possible that a trace amount of chemicals could cause the reactions that you describe that you experience and that many of us have that affect multiple systems in the body? Their argument is that it's all in your head. It's a psychological disorder, it's an anxiety disorder, nothing to do with chemicals. Is that what they're saying? And how do you respond to that argument?
Varda Burstyn 42:07
They're saying, that is what they're saying, you have to bear with me because there's a set of kind of analytic or intellectual moves that they make in order to get to that conclusion. So first of all, they don't look at onset, most people discover that they have MCS, after they've had an exposure via it over some time or rapidly to chemicals and suddenly discovered that they've developed this horrendous sensitivity that makes them like aliens on their own planet. And often, the concentrations involved there are quite extensive, let's put it that way. They do not deal with onset, they just talk about MCS as a thing that exists. So all of the chemicals. And you had Shahir Masri on on your podcast. And he talked about onset in eight different groups. And I think that study is very strong. And I think it very much shows that when you're exposed to certain kinds of chemicals, there will be a subset of people who will develop this chemical sensitivity of it right, get sick in other ways as well. And those groups include, I think it's worth saying, among others, people who were exposed to chemicals after the attacks on the World Trade Centers, the World Trade Center, and the Gulf War. And people who work with solvents and aircraft were workers who work with very intense a fuels and other kinds of chemicals, the point being that onset and in my case to even though I have had it all my life, I've had crashes into different degrees of severity. And those have been brought on with high concentrations. So if you ignore onset, and you ignore what, that even breast implant people, women with breast implants, who did not have silicone inside their bodies, before they had the breast implant, but then suddenly had the silicone in their breast implants, and then developed MCS, all of this comes out of the mastery at our piece. And I think there are many strong very strong arguments that show that the chemicals play a role, but the INSBQ report ignores onset, so we don't have to look at that. So we're just looking at this. So then the second move is to not use the word chemicals, but to use the word odor. So the fact that I don't know about you, but if I touch certain kinds of things, particularly highly refined petrochemicals, I get lesions on my hands or any part of my body that comes into contact, it can be dermal it can be it can it can affect the lungs, it can affect inside the body. It affects the heart and affects the liver, the there's a group of doctors in Italy who have written a new piece in 2021. And they talk about all of the different systems that are affected, not discussed in this thing we talked about the odor of the olfactory system. So you narrow it down to that.
Varda Burstyn 45:04
So it's not chemicals, its odors. And here, I will say again what I've said before, many times, all odors are chemicals, but not all chemicals have odors. So that narrowing down. And then if it's only chemicals that have odors, you've already excluded a whole bunch of issues, people and chemicals, but then you are then looking only at one system, which is the olfactory system, which is the only way to deliver this. Whereas other people will say that there are other ways to deliver the chemicals.
Varda Burstyn 45:39
And then they say at usual concentrations? Well, there is a vexed term if I have ever heard one, at usual concentrations. What is the usual concentration? If you're a lady who works in a nail salon parlor, what's the usual concentration of acetone that you're exposed to? If you are a, let's say, again, a woman who works in the automotive plastics plant, you're breathing toxic chemicals all the time. So you know what is the usual concentration, but they use that to odors at usual concentration. So now you have no onset, you have chemicals, which are odors, odors, which go up to the olfactory system, and then according to them in their neurological studies, there is no mechanism in the brain, no receptors or other mechanisms in the brain that can absorb such low trace levels of chemicals at a level, which would set off the types of symptoms that you see in MCS. So that's a very deliberate, but somewhat complex intellectual operation to make this definition happen. So what you have there is you have odors, you have usual concentrations, and you have nothing in the brain that could actually set off what they call a biological cascade of symptoms, which is what we feel as MCS symptoms. Well, what we did is to show that they were wrong about that. And we used, we looked at a whole lot of different aspects and research. But we spent a lot of time looking at the whole question of the TRP channels. And the receptors in the brain.
Varda Burstyn 47:24
John Milan has written a lot about this. But he his work came from the work of other people, particularly some Scandinavians who showed that there were these receptors all over the body, but also in the brain that could pick up just absolutely the tiniest traces of chemicals. And that would react very violently. In some cases. These are related to, they're called other some people call them the vanilloid receptors. And one of the ways that you can test is to try and see a person's reaction to capsaicin, which is the hot stuff in chili peppers, and people who have an unusual reaction to capsaicin often have MCS and so in any case, they're capable of absorbing and reacting to the very tiniest traces. That research has been around that research was named in the paper, but it was completely ignored.
Varda Burstyn 48:22
The second type of research that we look at in detail because we look at several others, not in so much detail, but in detail is the new work by Claudia Miller and her Gang on mast cell activation and mast cell activation syndrome. And in the paper that they published in 2021. On that is a very, very, very detailed discussion of the way in which mast cells, which are an incredibly important part of that cellular immune system can respond to the tiniest traces of chemicals can respond faster than the speed of light can keep on reacting for days and days and days afterwards. In other words, many of the mysteries of MCS appear to be solved with this. But what is important also to note is that, and this, I think is shown coming out of any research these days, as well as it isn't one or the other. But there's a crosstalk that develops in the brain between different kinds of cells.
Varda Burstyn 49:27
So the mast cells, and the neurons with the TRP receptors start can have an exchange glial cells, which are mostly immune cells in the brain can be involved in this exchange. And we've seen some of that now, a brand new research in me shows that there's an interaction. So this actually complex, I sort of think of it as a pinball machine up there, which is that one element gets set off affects the other because they're, you know, they're they're, they're nano meters apart, right? That they affect each other and, and you get this, this kind of thing happening that affects all the things we talked about the cognitive aspects and your muscular aspects. And then it also creates affective symptoms. And these things are not counterposed to each other, but they're part of this complex dance, that stuff was not in the INS PQ report, it's in our report. And that shows how the brain can respond. And the body too, because it isn't just the brain and the heart, and the lungs can respond, but to the tiniest, tiniest amounts. Now, that's one thing.
Varda Burstyn 50:42
We also went over to environmental studies, and we looked at an emerging field, which has come out with come from a number of places, but where I found it when I was doing research was in work on maternal child health, in relation to environmental exposures. And know there are people because our diagnostics are so sophisticated, we can take a look at metabolites in the blood, we can take a look at the blood itself, and whether it has a healthy balance, we can take a look at and measure very carefully the amount of chemicals in the blood, we can take a look at what's happening in the brain when exposures happen, both to traumatic, not both, let's say three to traumatic events, to social stressors and chemical exposures. And we can look at how those things interact with one another.
Varda Burstyn 51:35
That's in environmental health, as opposed to MCS, but you read that and you go Oh, wow. Okay, so the mechanisms there are very similar to what we're looking at with MCS. And one of the things that they say, and I'm thinking of people like Emily Barrett and Amy Padula, if I have their names correctly, is that if you have exposures, let's say you live in a fenceline community next to a chemical plant, right? You have those chemical exposures, and then you have you know, trauma in your personal life and your poor, you're going to have a hell of a synergy between those three types of stressors. And that stress is very important, because some of the mechanisms for those stressors are the same, perhaps the fear that mechanism is the same, but it comes from different sources. And you have to be able to address the sources. If you want the consequences to stop.
Aaron Goodman 52:31
I think it's a good place to pause if I could, because you mentioned some really key themes, right? You mentioned trauma, you mentioned fear. So I wanted to ask you, Varda, are the authors of that Quebec report? Are they saying that people with MCS have a fear of chemicals? Of odors? Or are they saying that we have a phobia, is that what they're saying?
Varda Burstyn 52:53
It's fear, fear, though, I don't have the quote in front of me. But it's, you know, it's in the first few pages of our thick, they have a fear disorder, they have an unjustified fear of smells, which they think make them sick and an unjustified preoccupation with what's going on in their bodies. And now, the other thing I need to say Aaron, is and we point this out in our document, particularly in the section chapter seven, and eight, where we address the stress and anxiety issues, because before that we address the chemical issues is that we quote a number of different ways in which they formulated how they say what they say MCS is as a as an anxiety disorder, and each one is slightly different. So it's very, it's like a jellyfish, it's very hard to just get your get it in your fist and hold it and know that you've got what they're saying.
Aaron Goodman 53:52
Right. And so one of the things...
Varda Burstyn 53:54
Anxiety that it drives, drives it in other cases of stress that drives the anxiety. In some cases, it's fear of the chemicals. In some cases, it's fear of other things that is somatized into fear of chemicals. So, you know, I can't give you a totally clear formulation, because I don't have a totally clear formulation to give you but they do say that it is fear of smells, which they think are chemicals that will harm them. And these are harmless, harmless air quotes harmless substances.
Varda Burstyn 54:32
So you know, we know from environmental health studies that all the endocrine disrupting chemicals in our household products are very bad for us and are making our kids sick and stupid. We know that we're getting breast cancer, lung cancer, liver cancer from everyday chemicals, but in this report, they're harm less chemicals, because they couldn't possibly bring about the cascade of MCS symptoms.
Aaron Goodman 54:58
I wanted to also ask you what did they say about trauma? You mentioned trauma? And is it their argument that folks with MCS may have had childhood trauma or stress, and that activates the amygdala in the brain. So we have an over reactive amygdala, that and that can be addressed with things like brain retraining, and calming ourselves down is that what they're saying? That we have an over reactive amygdala caused by stress and trauma?
Varda Burstyn 55:34
In effect, and one of the problems is to get a succinct and synthetic formulation. So in effect, that's what they're saying. And they do talk in their chapter on the psychogenic hypothesis, they do talk about that, and they quote Stodden Meyer, to whom I referred to earlier as sort of like their main man, and Stodden Meyer said that people who were abused in childhood and traumatized are very over represented in the ranks of people with MCS. And I am going to reiterate when we looked at that we did not find that to be the case.
Varda Burstyn 56:10
But two things. Number one, what I just said about a synergy between personal trauma, socio economic stressors, and toxicological stressors, is that work. So if you have a total load, we can use that concept total load of you know, severe trauma and poverty, or racism, and then a huge toxicological load on top of that, you're going to be more likely to develop disease and among people who are likely to develop disease, because we know stress predisposes people to illness of the people more likely to develop disease, a subset will develop MCS. And that subset is determined by series of things, including possibly the genetic heritage, because there's a lot there's been work very promising work, which they just missed. That says that there are people who do not have genetically do not have the enzymes and methylation capacities and so forth, to detoxify these chemicals.
Varda Burstyn 57:15
And I happen to be one of those people, because I had the test done. So I know that to be true at but there are other factors as well, which is what your body burden is at a certain time, like, you know, you layer it on layer on layer on and then down so they don't look at those. And that's when I said earlier, they don't look to the field of environmental health, which is actually what shed so much light on things.
Aaron Goodman 57:37
So the authors of the Quebec report do pay some considerable attention to trauma. And if I hear you correctly, you're not saying we need to take trauma out of the equation that sometimes people with trauma, if they also have perhaps other stress in their life, and exposure to chemicals, an onset incident, for example. Right, but that's needed, and then subsequent daily or regular high sensitivity to chemicals. Right. So what I want to understand Varda, is are the authors of the report saying we just need to address that trauma, some people say they have resolved their chemical sensitivity by doing certain brain retraining programs. And the intention of our chat isn't to go take a deep dive into that area. But let's just play the devil's advocate for a second. Let me just ask are the author's inferring that if we people who may have had some form of trauma or stress in our life, if they're arguing we have a hyperactive amygdala is the solution to do brain retraining program that some people say have helped them reduce the severity of symptoms or help them get better? Is that the path forward that authors of this report are saying? And if so, how do you view that argument?
Varda Burstyn 59:06
One of the most frustrating aspects of this report is that even though there's a long chapter on the psychological or the psychogenic hypothesis, in the end, what they reduce their descriptors to is people you know, why did why are certain people getting MCS because of obesity, if I can remember the phrases, exactly, temperament, personal history, and psychosocial makeup, okay, that's what we get. That's what we have to work with. It's not very good.
Varda Burstyn 59:38
And now I want to say two things about that. Number one, we go through the kinds of stressors that people encounter very carefully because there are stressors and stress and consequences of stress that come from highly troubled interpersonal relationships, particularly for children in the formative years, there are social determinants of health, so called which have to do with the stressors of, you know, economic security, employment, housing, etc. And then there are toxicological stressors that have to do with all of the different chemicals.
Varda Burstyn 1:00:16
By looking at the work of Hans Sally and the adverse childhood experience studies, we show that first of all, a lot of stress in your life predisposes you to illness, but that doesn't get you to MCS that gets you to sick. But what kind of sick we don't know if you have adverse childhood experiences, you are very likely to have ill health and in later life. So trauma definitely is is a factor. So we would expect a lot of people's MCS to be traumatized, but it does not get you to MCS, it gets you again, to a predisposition to illness, predisposition, perhaps certain kinds of trauma.
Varda Burstyn 1:00:56
You know, they talk about neglect, they have seven categories of childhood trauma, some of it gets you to obesity, some of it gets you to, but it doesn't, we don't know, let's put it this way. It is not a precise predictor of what kind of illness you're going to get. And it doesn't get you to MCS, then we take a look. And we do spend a lot of time looking at these things. We look at the social determinants of health. And once again, we can take a look at the different kinds of stressors that come out of poverty, that come out of isolation that come out all of these things, and they do predispose you to ill health. And we look at do you know, the Whitehall Study? It's a very famous, very important study that was done of bureaucrats in the British government, now it's a study on aging, but to try to determine what the relationship was between health why the health inequities, and it actually at that time, which is some time ago, now really turned everything upside down, because it said that people who had a lot of work and a lot of responsibility were actually quite healthy. It was the people who had that but without authority, and without anyway, the point is, it was another study that looked at many of the social determinants of health, and it got you to disease, but it did not get you to MCS. And what we argue on we look at the Gulf War, and we look at a very a number of other things. We argue that to get to MCS, which is one disease process, which can be comorbid comorbid, or co-occur with others, you have to have a toxicological component.
Varda Burstyn 1:02:31
So it's not about the fact that none of us is traumatized, most people are traumatized. I worked as a psychotherapist for 10 years in my you know, long, long, long ago. I think most people are traumatized in childhood, some people much more than others, but that there it is, I think that the stressors of being in the certainly the lower 50% So socioeconomically so of course, we'd expect to find people with these problems among the MCS population. But most of the people in those populations don't have MCS, they don't have it. Most people who were sexually abused don't have MCS, most people who have had poverty in their childhood don't have MCS. Now, it would be interesting to take a look at people who were exposed toxicologically in their childhood as I was, because I have MCS. So that's one set of things, which is we say, take a look at the whole picture. But for MCS, rather than just disease writ large, you have to include the toxicological component. That's one answer to what you said.
Varda Burstyn 1:03:38
The second issue is, do they think we should all go and do dynamic neural retraining, you know, or medullary trading or brain retraining the various things? They absolutely do not speak about what treatment looks like for MCS, they have God knows, I don't know why, because they've certainly taken on everything else. But they don't they say we don't, you know, that's not for us to say. But what I have said in many other places before I got to write this is that in your definition of cause and mechanism is embedded a clinical program.
Varda Burstyn 1:04:13
So if you say that the mechanism is a damaged amygdala and some trauma, then as night follows day, the clinical recommendation would be for psychotherapy. anxiolytics. And if you couldn't do a brain retraining, when I would say it is is that neither anxiolytics or antidepressants, there isn't a record of clinical experience with those being effective. I've heard of a few people who were able to take antidepressants for a while and get their symptoms under control, but I have not heard of that as a cure. And on the contrary, there is evidence from the patient record that these things actually make it worse.
Varda Burstyn 1:04:59
So no, not so much maybe benzodiazepines, but the SSRIs, and so forth, make it make it worse. So that's not very helpful. In fact, that could be very, very dangerous if it's combined with the belief, which seems to be embedded to me to be embedded in the conclusions, that you should not avoid chemicals. And maybe it's even important to expose yourself to chemicals. So that, you know, you can just get over this neurotic fixation you have in this fear, as for the amygdala retraining, the amygdala retraining, has actually worked for some people. And I think it's very important to acknowledge that for some people, it has been an answer. For some people, it has been 100% answer. And for some people, it's been like a a big improvement, an antidepressant maybe lowered sub reactivity.
Varda Burstyn 1:05:48
But what we don't know is what are the factors? Are these people who live in a safe house who've already achieved the most important issue, which is avoidance of chemicals in your home? Are they people who've done a lot of detoxification? Are they people who have addressed their chronic infections? Are they people who have had their hormones balanced? Are they people who are careful about their diet, if you've done all of those things, and your alarm is still like, it's like the fire alarm still broken, then indeed, that may be helpful to do DNR, and it may work. But it may not work if you haven't been able to do those things. And in some people, it may not work at all, because it could be broken, it could just be broken forever. So again, and this is the thing that is hard about simplifying this is there's so many complexities to each of these levels. But I think that what I want to say synthetically is if you say that the disease is about fear, and we have a talk therapy, and we have drugs that you know, tamp these things down, then that would logically be the type of therapy that would come out of this report, if clinicians were trying to translate what it says about causes and mechanisms into diagnosis and treatment. And that's very dangerous.
Aaron Goodman 1:07:06
Right? In preparation for our conversation, Varda, I happened to have a conversation with a physician, and I ran this by by this doctor, and I had happened to have read this Quebec report. And I said, Well, what do you think about this? Because like you and like a lot of people, I was very concerned with the with the report, the Quebec report. And the doctor said, No, no, the Quebec authors did a fabulous job, they did a fantastic job because they're pointing to the inflamed or the hyperactive amygdala, that part of that brain, the part of the brain that responds to stress is, and the doctor said, if you do a brain retraining program and commit to it, I guarantee in a year you can cure yourself of multiple chemical sensitivity. So his bottom line was the right the writers of this Quebec paper absolutely correct, that it's a stress response. And if I would just take care of myself. And I recall other things, the doctor said, If I had more love and positivity in my life, if I did a brain retraining, if I relaxed, more, everything would just go away, I'd be healthy. Again, I wouldn't have the acute multiple chemical sensitivity that I that I have now. So that's how the particular physician read the Quebec report. And you have very efficiently and you've said that well, brain retraining may work for some people, but it's not everything and we end like the title of your report. We have to put chemicals back into the equation. We can't ignore the causation. We can't ignore the problem that chemicals cause for folks with MCS, would you say?
Varda Burstyn 1:08:56
I'm actually very sad, if not surprised to hear about your conversation with this physician. This is exactly my fear. And that's why I wrote this document. And me and Amaury McCory, who helped so much.
Aaron Goodman 1:09:11
And by the way, I sent the doctor your response, and I didn't hear a response from them, but I did share it with them.
Varda Burstyn 1:09:17
Okay. And I guess maybe that makes like, I wake up, it was so hard to do. I wake up sometimes thinking what you know, why have I wasted these precious last weeks and months of my life and doing this but that's why because it is just a great big, what would you call it? It's like a whitewash. It's like a whitewash. In the two sections. In my document, our document, where we talk about the clinical experience, we point out that to get to MCS, MCS is a disease process, but it's also a symptom. Okay, it's a symptom. It's a symptom of other things that are not going right, that then lead to sensitization of the immune and nervous systems, so that in MCS clinics or among advanced MCS practitioners, they look for the possible causes for those sensitization.
Varda Burstyn 1:10:21
So let me just run through what they are because you don't, you can't have a recipe for how to fix MCS because everybody has their biologically individual unique combination of factors. But you can have a pilot's checklist of the factors you want to make sure you're attending to, you want to make sure that you understand what the body burden is up to, particularly of pesticides, but also of heavy metals. So you check, you do a blood test for the for the, for the pesticides, and you do or you could do a biopsy, but you do a blood test for that. And you do a challenging urine thing for the heavy metals, you want to see what kind of chronic infections are still going on. And Lyme is a huge issue, especially in people who don't get better with the usual measures for MCS, but also any, any infection that was a serious infection can become a chronic infection.
Varda Burstyn 1:11:18
And if your immune system isn't working well, it's working there all the time. It's creating bio toxins in your body, it's sensitizing, you know, your nervous system, these these things are making your nervous system, you know, and your immune system is on the is being alarmed all the time. So you want to talk about stress, that's a stressor, just like the chemicals are a stressor, we talked about Robert Navios cell danger response about how the pollutants affect the mitochondria, and all of us and make them it's very hard for the body to deal with additional things. So you look for the infections, you look for the body burden, you look to see whether the neurotransmitters are all screwed up. And they usually are you absolutely look for mold and mycotoxin illness, which is almost always present. You look, you look for the you look at the genetic polymorphisms you look to see if according to mainstream tests, you know, you get a result back that says you cannot metabolize SSRIs, you cannot metabolize, you know, anti but certain types of antibiotics. And you look at the gut brain axis, because we know that if the gut is disturbed, and that we know that the brain will be disturbed. And we know that heavy metals and pesticides, and microplastics and endocrine disrupting chemicals all heavily impact the gut, which then produces the neurotransmitters or does not produce the neurotransmitters.
Varda Burstyn 1:12:55
So you can have like a gut depression that has nothing to do with what your relationship was with your mother, when you were five years old. It's to do with the fact that you've got, you know, DDT byproducts in your gut, and you've got mercury, and you've got a permeated gut, and therefore you've got to permeate a blood brain barrier. And so you try to fix these things, you identify what they are, and you try to fix them. And you know, you have to fix Lyme, mostly with antibiotics, you have to fix all the chronic infections, fungal as well, you know, so you need sometimes you could have nutraceuticals, by, you know, herbs, pharmaceuticals, but you got to fix those problems.
Varda Burstyn 1:13:37
And it's not usual for people who have a lot of those problems. And I had them, Oh, my God, how could I forget, and you look for the status of the immune system, you look to see what your complement of killer cells is, you know, your of your lymphocytes, and have your immunoglobulins. And if you have serious deficiencies in those, you have to fix those things. And you definitely want to understand back to the gut access, what drugs have been taken, I've had to take many courses, hundreds of courses of antibiotics in my life because of early infections, which then continued. The point is, if you've got all these factors going on, my bio prediction is just a prediction. It's just an opinion, but is that it's going to be very hard to fix the MCS if you can't fix the factors that are creating the sensitization and keeping it going in the first place. So in environmental health practices, you have all of these issues that are tested for and looked at if now, again, I will repeat if you can address these issues, to a large extent. And if you can give the system arrest by being away from the chemicals that keep triggering it over and over again, then a many people get better or significantly better, if not 100%. And I know people who've gotten I would say A close to 100% in the sense that they can live a normal life with with precautions, with nothing to do with the brain retraining, nothing. My own mother got better. I know people who've gotten better, I got better when I was at Dulles. So it isn't just because you want to fix that traumatized amygdala.
Varda Burstyn 1:15:20
However, I will say this, long before the Quebec authors came along, people understood people like Dominique Pom, a French, a French doctor dominique pom and they call it, the syntax is funny, it's the research and treatment European group they they have talked about, and diagnostic imaging has shown that the amygdala is distressed in MCS responses, it is involved, but that doesn't mean that the cause is trauma from you know, it, that's not what it means. And it doesn't mean that it's because you're an anxious person that your amygdala is going, your amygdala can get very heavily impacted by all of the factors that I just listed. And you can remove that you can have love in your life, you can do talk therapy for 20 years, and everything doesn't do a damn thing. If you don't have enough immunoglobulins if your gut is a damn mess, if you can't get a safe place to sleep, where you aren't sick all the time, and so forth, and so on.
Varda Burstyn 1:15:21
So the difficulty with this report. And it is really why I wrote it is that it would appear to give a very simple and in effect, I'm not saying intention, but in effect of victim blaming solution, ie your psychological mask, if you would only just get your act together by doing this particular thing. That said, I don't want to discourage people from doing the brain retraining, if they feel they're at a good place where they can make maximum use of it. And if and if and here are the quality qualifications, it's expensive. By that I mean that you have to spend a lot of money to get the materials. And then you have to fundamentally modify your life for one to three years in order to do it. And it's very difficult to hold up down job, take care of a family, all the things that usually you know produce stressors in your life, because it doesn't work unless you put yourself into a very unusual thing.
Varda Burstyn 1:17:30
So it requires a phenomenal investment of time and money. It's not a reason not to do it if you have the time and the money. But it may be that if you don't have like, I don't have enough immunoglobulins one shot of gaviscon will get you the same results that three years of you know, brain retraining may or may not ever get so early on in the report.
Varda Burstyn 1:17:54
When we talk about what's left out of the report the INS PQ report, one of the things we talk about is biological individuality, that it is really important to understand in every individual, what are the factors that created the MCS and then to do a treatment program that addresses those factors. And in that context, it may be helpful and even possible and productive to take on this brain retraining. But it does not substitute for all of these other things. And if government programs tried to create centers for people with MCS, we're only this type of intervention is made available. When I say things are dangerous, that's dangerous. That's dangerous. Because if you don't look at the other underlying factors, and this cannot solve those other underlying factors, then you encourage people to live responsibly, you don't help them with their things that made the MCS put there in the first place. And you keep on wasting their time, their money, their health and and the public's expense. And other and we do write about this in detail. At the end of chapter eight, which is the second of two chapters on stress and anxiety. We do talk about the brain retraining modality as part of our discussion of psychotherapeutic or psycho neuro psychiatric interventions. It's not like they don't make any sense for anybody ever. On the contrary, sometimes they're very important and people get very tired and blue and depressed about life. So a little bit of litter a condition literate counseling would be helpful too. But you can't substitute everything by that modality for it.
Aaron Goodman 1:19:40
I wanted perhaps to ask a two part question as we move towards wrapping up our conversation, if you will. The first is and just building off what you were just sharing is about why should anyone care about the Quebec report? Obviously you care, I care. A lot of people care but as you note The report that you responded to was published in French, it was published by a health institute in Quebec. Listeners to this podcast are across North America and around the world. Why, in your view, should someone outside of Quebec, far from Quebec, let's say, be interested or care about the fact that that report was published? And the second part is, what do you want to come next? What would you like to have happen? Now? Would you like the authors of the report that you responded to to issue a retraction? Would you like them to make a public acknowledgement of the omissions that you have pointed to? And what would you like the Quebec government to do? Because they have published the report and it currently exists on the Quebec government website? Would you like them to take it down?
Varda Burstyn 1:21:06
The first part is why should people care about this report? It's in French, it's in Quebec? Well, the first I think you've answered your own question, when you said that you reached out to a doctor in France, and he had read the report, and he had already drawn the conclusions that you reported, which are the conclusions that are erroneous and dangerous. The world is not only English speaking. And la francophonie, the French part of the world is very, is very large. And furthermore, in France, there's a group of people led by Dominique Bell Pom, who have worked been working very, very hard to get the medical establishment to acknowledge and do something about environmental sensitivities, both MCS and EHS, and this report undermines their efforts, and they are seen as European leaders.
Varda Burstyn 1:22:01
And so this undermines them in the European context and international context. Because it's a global world. English is not the only language. And the consequences of this report can ripple into the English world via those networks. Quebec is fairly isolated, perhaps geographically, but it's French is is is a lingua franca for a lot of people in this world. And I've heard a few reports about this report, this the Quebec report being used even in the United States to justify things like continuing to spray pesticides in public properties and stuff like that. So it absolutely has.
Varda Burstyn 1:22:46
The second reason it has an impact is because there are a lot of people in the medical establishment and absolutely in the chemical industry, who still very much want MCS not to be what it is in the chemical industry, because it's just a screaming siren. That says that quite opposite to what the Quebec report says that the chemicals are harmless. It says that chemicals are harmful, and that every many of our everyday chemicals are very harmful, and they are very harmful. And we talk a lot about that in the report if people want to know how they can read our document, but they are very harmful. So for the chemical industry, we can understand why they don't want MCS acknowledged as a toxic injury as a disease of toxic injury for the medical establishment.
Varda Burstyn 1:23:35
And this is not all doctors because almost all the really good research is done by MDs, it's done in Japan, it's done in the US. It's done in Italy, it's done in France. But there's a phrase that's used to describe a number of conditions, these last years chronic complex environmentally linked, I think that the single organ specialization paradigm of Western medicine is completely incapable of dealing with these complex illnesses where it isn't just about something's wrong with the brain, or something's wrong with the heart, or something's wrong with the liver, or something's wrong with the immune system, because in MCS, all those things are affected at the same time. And it means that you have to become a person who can understand the relationships between these things, and it's not taught and the money that we spend the most money goes to the top specialists on single organ systems and there's a phenomenal institutional resistance to that, that the second, there's a resistance amongst specialists who do not want to see their structure, their dominance, their paradigm challenged an MCS really challenges it in the same vein, the structures of that paradigm are in place.
Varda Burstyn 1:24:59
We have have money in Canada, in our public health care systems that pays for certain kinds of tests. And in the report, the Quebec report, it says, you know, people who take these tests come out as clinically normal. Yeah, that's because they don't do the right tests. The test that I spoke with you about a moment ago, tests for chronic infections that test for gut brain access, some of them are conventional, but have to be paid for privately and can only be accessed through hospital based specialists, who often will not do it, if you tell them that you're chemically sensitive, but a lot of them aren't, they're just not available, we do not test for the chemical levels in the blood, we don't we don't do that. So you'd have to actually make new compensation mechanisms in the healthcare systems, not just for the doctors, but also for the modalities, we don't do the treatments that are done. So you'd have to pay for those. So they the weight of the resistance to the changes that are required, and the way that upsets the rice bowls, and the people who are most dominant and make the most money, the labs, who make money who don't want to have to deal with all of this stuff. And finally, the bureaucrats, I think they have a huge amount to answer for because what they do is they don't represent the public interest, they bond with that special interest group that they work with in the hospital is the doctors of the labs. And that's the interest that they represent. And I've watched it for 40 years, and I've seen it. So with the bureaucrats, the government's with the doctors, the specialists, and the compensation mechanisms. And with the chemical industry, that is a troika of incredibly powerful resistance. And that is what we're up against.
Varda Burstyn 1:26:45
So that's why the report matters, because that report gives fuel to those three forces to continue to deny and negate why MCS exists. And what I would like is even if your listeners don't, and your audience don't want to read even my paper, or the convect report, that they'll go to the link that you give them, and they'll download the report, and they will my answer to the report our answer, me and Maureen's, and that they will forward it to every single person who they think should be aware of MCS, because we are going to need our informal distribution networks to get this out. So even you know, read, read the preface, read the executive summary, you know, and then read whatever parts you want to read. But we won't we have to counter this report because it report is in sync with the with a dominant not the only but the dominant view in the medical system. It has to be overturned. And it can only be overturned if people actually distribute the thing that contests it and refutes it. So that's what I would like to say.
Varda Burstyn 1:27:58
So that's one, two - what do I want the author's and the Quebec government to do in the preface to the second edition, which I hope you will help your audience find by going to the website, we talk about a new article that came out in May 2022, one year after the Quebec report came out. So the article in myalginic encephalomyelitis, chronic fatigue syndrome, and it is written by a team of four authors, and one of them is Mary Ann Tremblay. She is one of the principal co authors of the Quebec MCS report as well. But the thing about this report is that it reads like something that was written by people who have an approach that is similar to what we put in our report. ME is not an anxiety disorder. According to this paper, it's a biophysical disorder, it is primarily an immune disorder, it has to do with their hypothesis is a dominant or pre dominant role for glial cells in the brain to mostly neural, mostly immune cells, but interacting with all of the mechanisms that I talked about earlier in this conversation, and it appears to completely contradict the INS PQ report on MCS.
Varda Burstyn 1:27:58
So number one, in that preface, we have called for her to make a clarification. What which one is it is me and anxiety disorder, or is it an immune disorder? Can we please have that clarified? Next, we support the calls that have come originally from inside Quebec, for the INS PQ, the Institute of National Public Health in Quebec to withdraw the report. We don't think it's actually amendable in the form that it's in, it's too big. It's too complicated. And we think it should just go to mean so we do want it to be withdrawn. I don't care what the what the other two authors say. It's not about them. It's About the authority of the institution, that that put it out, and it needs to say, we were are withdrawing this report, because we do not think that it is. Well, we've suggested some wording in a letter that we've supported from the Association of MCS folks in Quebec. And that's what we think should happen. Now, we also think a whole bunch of other things should happen.
Varda Burstyn 1:29:16
We've made recommendations for what the federal government should do with what the provincial governments should do, I do want to leave on this very somber note, we are in a hell of a position those of us with MCS, because of the nature of our disease and disability, it is very hard for us to organize, and our doctors are in a hell of a position. They're in a position that if they undertake to do things that aren't approved by the College of Physicians and Surgeons in their province, or federally or aren't included in the public systems. And I've just talked about how what we need is not included in the public systems, there are danger for retaliation and repression from their own professional associations.
Varda Burstyn 1:31:05
But I want to say that if we do not find a way to organize together, and I think we have developed a blueprint for how to do that, and what to organize around, but if we don't organize together, we will lose, even as our scholarship has gotten better. We've lost a lot of ground in Canada, not in the US, thank God, but we have here. So we have to find ways to come together and make our voices heard. Otherwise, the forces that I said were ranged against the bureaucrats, the government bureaucrats, the doctors associations, and the chemical industry, they will continue to deny us and given that COVID has now taken over public focus and public attention, it's even harder to be heard. So we need even more to be clear, and united and how we speak. So when you ask me about what I want to see happen, I can speak about what I think Mary Tremblay should do, she should clarify her position, I can speak about what the Quebec government should do, which is to withdraw the report. But I have to end on saying that somehow we MCS patients have to find a way to come together and make our cause better known.
Aaron Goodman 1:32:18
Everything you've shared has been really enlightening. Complex. In-depth. So I will certainly share links to your response in the show notes and people. I'll help people find it. I really want to thank you for all the work you've done, and for taking time to speak with me about that on the podcast. Thank you so much.
Aaron Goodman 1:32:44
That brings us to the end of this episode of the chemical sensitivity podcast. Thank you very much to Varda Burstyn for speaking with me on the podcast and for all the work you have done, Varda, on this outstanding report. The podcast is produced by me Aaron Goodman, Raynee Novak and Kristy Eckland. We release new episodes twice a month. Please subscribe wherever you get your podcasts. Leave a review on Apple podcasts, it's a great way to help others find the podcast. Follow us on social media. Just search for the Chemical Sensitivity Podcast or podcasting MCS. Leave your comments about anything you hear on the podcast and please share the podcast with others. The podcast is also available on YouTube and you can read captions in any language you like. You can support the podcast and help us continue creating greater awareness about MCS. Please find a link in Episode descriptions at chemicalsensitivity.podcast.org. If there's someone you'd like to hear interviewed on the podcast or a topic you'd like us to explore, just let us know. Email us at firstname.lastname@example.org and thanks so much for listening.