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The title of this episode is "MCS is Not an Anxiety Disorder." It features a conversation with Dr. Eleanor Stein.
Dr. Stein is a a psychiatrist and psychotherapist with an appointment in the Department of Psychiatry at the University of Calgary in the Faculty of Medicine.
For over 20 years, she has been intensively learning about diagnosis and management of Environmental Sensitivities or MCS, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and Fibromyalgia (FM).
Dr. Stein’s goal is that everyone with these conditions receive effective and respectful treatment within the public health care system.
She is one of a small number of experienced clinicians for these illnesses in Canada and is involved with two research teams providing clinical expertise.
Her manual “Let Your Light Shine Through: Strategies for living with ME/CFS, FM and MCS” guides patients and clinicians through managing the symptoms of these conditions. Dr. Stein also offers self-management education online through the Pathways to Improvement course.
More information about Dr. Stein and her practice can be found at www.eleanorsteinmd.ca
I hope you enjoy the conversation.
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Aaron Goodman 00:05
Welcome to the Chemical Sensitivity Podcast. It's a podcast that amplifies the voices of people with multiple chemical sensitivity or MCS, also known as Environmental Illness, Chemical Intolerance and Toxic-Induced Loss of Tolerance or TILT. The podcast also highlights emerging research about the illness.
This episode features an in-depth conversation with Dr. Eleanor Stein. Dr. Stein is a psychiatrist and psychotherapist with an appointment in the Department of Psychiatry at the University of Calgary in the Faculty of Medicine. For over 20 years, Dr. Stein has been intensively learning about diagnosis and management of environmental sensitivities or MCS, Myalgic Encephalomyelitis (ME/CFS) or chronic fatigue syndrome, and fibromyalgia. Dr. Stein is one of just a handful of experienced clinicians for these conditions in Canada and is involved with two research teams providing clinical expertise on these issues. Her website is www.eleanorsteinmd.ca, and I'll provide a link to Dr. Stein's website wherever you find this podcast.
In our conversation, Dr. Stein talks about why many people with MCS experience anxiety. But she makes the important distinction that anxiety is a natural response for people who have to constantly navigate a world that makes them ill, and she insists that MCS is fundamentally not an anxiety disorder. We also talk about the ways that many folks with MCs are dismissed or misdiagnosed by medical professionals and how this can contribute to experiences of anxiety. And lastly, Dr. Stein talks about some of the ways people with illness can manage it.
I hope you enjoy the conversation. We release new episodes twice a month. The best way to never miss one is to subscribe for free forever. You get your podcasts, leave a review on Apple Podcasts. It's a great way to help others learn about the podcast and follow us on social media. Just search for the Chemical Sensitivity Podcast or Podcasting MCS. Thanks so much for listening. Well,
Dr. Stein, thank you so much for taking time to speak on the podcast.
You're welcome, Aaron.
Aaron Goodman 2:20
So I wanted to invite you to talk a little bit for folks who may not be very familiar or who are new to Multiple Chemical Sensitivity as a physician and as a physician who's worked with folks with chemical sensitivity for a long time without going into like an encyclopaedic definition of multiple chemical sensitivity. How do you understand it as an illness?
Dr. Stein 02:46
Well, in a way, it's a difficult illness to understand, because so little is known. So that's probably the biggest problem that we face in the field. The definition of MCS, the International agreed upon definition is that people with MCS react badly, they develop symptoms in response to really low, sometimes even tiny concentrations of chemicals, and probably MCS you could include in that chemicals and foods, right? Those would be the two most common things and drugs. So basically, anything that's coming into the body through the mouth or the nose could be a problem for people with MCS.
So the key I think we're it's problematic for the average person to understand is that the concentrations are so small that the average person doesn't react at all. Therefore, they think the person with MCS is crazy or neurotic or something like that, the symptoms have to be in response to multiple different triggers. So that's where the word multiple comes in, and the symptoms have to be in multiple parts of the body. The other really key thing about MCS that I think is important to know, is it's generally not considered the same as chemical toxicity. So toxicity is when a person is exposed to a chemical, and it permanently damages some aspect of their of their cells or their functioning. And to the best of them. I know some people disagree with me, but to the best of my understanding. MCS is generally reversible, if people can get away from triggers long enough for that for whatever part of their body was affected to recover.
Aaron Goodman 04:31
I want to just to pick up on that point. I don't believe you're saying it's curable, necessarily. Is that am I understanding correctly? Are you saying it can be managed?
Dr. Stein 04:42
Well, it's actually really, really hard to manage. Because in real life, it's virtually impossible unless you live like way out in the country, far from you know, any exposures even farm chemicals, for example, or pollution It's really hard to avoid exposures enough to not trigger symptoms. So although the definition says if you could just stay away from these exposures, no permanent damage has been done. But in real life, especially for someone living in a city or even suburban environment, it's virtually impossible.
Aaron Goodman 05:20
I wanted to just take a step back and ask you, Dr. Stein, how did you first become interested in this work? I mean, as a physician, you can choose virtually any kind of illness to look at? Is Multiple Chemical Sensitivity something that you've personally experienced? If so, is that part of what led you to focus on the condition in your practice? Yeah, absolutely.
Dr. Stein 05:44
I would say I was chemically sensitive my entire life, I remember. And I would say both of my parents were so I'm sure in my case, it's genetic. And my entire life when I would be exposed to chemicals, I would feel extremely unwell. And I remember with regret, that I had a very close friend who developed MCS in high school. And I didn't believe her, right, because her symptoms were so much more like I hadn't put two and two together in regards to my own health. And I probably did all the things that one shouldn't do. I was very dismissive of her and thought she was a bit crazy. So it's really hard, like I've had personal experience, really on both sides of the fence.
Aaron Goodman 06:29
On that note of genetics, is chemical sensitivity an illness that people can inherit?
Dr. Stein 06:36
I think the honest answer is we just don't know. There's a couple of great studies. One of them is from Italy, and one of them is from the Environmental Health Centre in Toronto, showing that certain what we call snips, single nucleotide polymorphisms. So certain genetic variants seem to be more common in people with MCS. And so I don't think it's strong enough to say, this disease is caused by genetics, perhaps in some people, the genes are a predisposing factor that makes some people more at risk, because the trigger for MCS is chemical exposure. So pretty much without that, you know, it doesn't develop. So I wouldn't say genetics is the cause. But I would say it may put people higher at risk, so that if they are then exposed to a high enough dose of chemicals, they may develop MCs, I want
Aaron Goodman 07:33
I’d like to dive into whether MCS is an anxiety disorder. But before that, I wanted to ask you, Dr. Stein, I interviewed Dr. Shahir Masri from the Hoffman Tilt Group in San Antonio, Texas. They research chemical sensitivity in an in-depth way. And he said that roughly 18 to 36% of the population in the United States reports having some degree of Multiple Chemical Sensitivity. What’s your assessment of how common Multiple Chemical Sensitivity is in, let's say, the so called developed world,
Dr. Stein 08:12
I'm probably not the expert on that I just rely on research. So you know, the research that I find credible is by Dr. Anne Steinneman who's an American, but living in Australia, her most recent study shows that 12.8% of Americans have actually been diagnosed and up to 26% have symptoms. So I think the difference between those two groups would be if you have environmental sensitivities, it means that you're sent more sensitive than the average person and things you're exposed to makes you feel unwell. If you've been diagnosed with MCS, you have to kind of meet those more robust criteria saying you're predictably affected, every time you're exposed, you get a whole bunch of symptoms in a whole bunch of parts of your body, and they linger until you can get away from it. And probably the biggest difference would be people with MCS, it's disabling it's severe enough that it's really causing a change in lifestyle, a change in who you hang out with where you hang out, things like that. Whereas I'm guessing most people with kind of garden variety, environmental sensitivities are aware of it, and maybe they try to accommodate but they're probably not disabled by it.
Aaron Goodman 09:31
How about we dive into the very timely topic of anxiety and chemical sensitivity? You know, even after decades of research, it seems like this question just seems to never really go away. And I think it's quite disturbing for folks who have chemical sensitivity. Do you think that Multiple Chemical Sensitivity is an anxiety or a psychological disorder?
Dr. Stein 09:56
So the answer is no, just to make it like really clear. Now I can talk about why I say that. In my medical practice, I only see people who have MCS and related problems like fibromyalgia or myalgic encephalomyelitis. And now increasingly long COVID sufferers are kind of finding their way to me. So of course, in my practice, I tend to see the worst of the worst, right? People who have tried everything, sometimes eventually find their way to me. So in my practice, a lot of people with MCS do have anxiety, like maybe as many as 50% of the people with MCS that make their way to me have, say diagnoseable, or noticeable anxiety. But what's really important about that, okay, they're the worst of the worst, they've been struggling and suffering. And finally, usually, after many, many years, have found their way to me, if you just look in the general population, I'm sure that rate would be much lower. And although 50% of people have anxiety, that means the other 50% Don't. And so they have MCs, sometimes extremely severely, and yet they're not anxious. And so to me, as a psychiatrist, that tells me that MCS and anxiety are not the same thing, when I dig into people's history, because that's what psychiatrists do. We want to know, you know, everything that happened in your life that may have led you to this point, looking for maybe things that we could change or alter. It's really obvious to me that the majority of people with MCS, who also have anxiety, the anxiety has come on secondary to the illness.
And if you think about the illness of MCS, it's a setup for anxiety. Because you lose control over your life. You never know whether someone in your family, one of your friends, one of your workmates, is going to come in having tried the latest new perfume that was advertised or is using really chemical ink cartridges in the you know, in the printer that's in the next room from you, you know, a lot of patients are really affected by cigarette smoke. cannabis smoke is now becoming, you know, quite a big problem for people with MCS. So if you're living in that situation where you're not in control, and you never know when you're going to be affected, to me, that's a setup in which most reasonable people might become anxious. It's an understandable reaction. And I think what happens in medicine, we're so guilty, we see someone have a snapshot in time, after they've already been ill often for years. And we say, Oh, they're very anxious. Maybe if they dealt with their anxiety, it would improve their MCs. But that's faulty logic, because the anxiety is caused by the MCS and our interaction with society. So if there was better accommodation, I think that would be a potential solution to the anxiety.
Aaron Goodman 13:00
Very interesting and good to hear you say it. So clearly, that Multiple Chemical Sensitivity is not an anxiety disorder. And it's because of the unpredictability of life. And the constant susceptibility of being exposed can create the experience of anxiety for people. And you also talk about how many people with multiple chemical sensitivity when they go to seek medical help, they're often misdiagnosed with a psychological condition or anxiety. And you've said in a different forum, and I'll just like to quote you, imagine if people with another condition, say cancer were told by clinicians, that their illness, for example, cancer or heart disease was all in their head, it would be totally unacceptable. And this is what people with MCS face every day.
Dr. Stein 13:57
I stand by that statement. And I was thinking before this interview, say it was so I don't think it is I think the evidence is very strong that it isn't and that the anxiety or depression that can come with multiple chemical sensitivity is what I call secondary rated arises because of the trauma, the life circumstances, the uncertainty, the lack of control all of those factors. But just say for a moment, it was a mental health disorder, are these people not still deserving of compassionate care? So what happens in real life is when people with MCS or any other poorly understood disorder, for that matter, are misdiagnosed with a mental health condition? There's like this weird thing that happens in the minds of the healthcare professional that says, Oh, well, then you should be able to get better than it's not very serious. I'm a psychiatrist. Mental health conditions are incredibly serious, incredibly deceived. blank and incredibly hard to treat. So it's very illogical, even if it was true. And my other kind of plea is when we're seeing a patient with a disorder that's poorly understood. So the big problem with MCS is there's no diagnostic test, I'm sure you're going to have guests on your show who are going to talk about maybe some potential tests. But as of now, we don't have one. And so then people just don't believe it exists at all. Again, like really faulty logic that's incredibly harmful for patients.
Aaron Goodman 15:32
I hear some people with chemical sensitivities say, ‘If I were to make up an illness, at least I'd make one up that people would believe.’ Right? So we have a case where millions of people struggle to get medical care to get a diagnosis to be responded to with compassion from medical professionals, and you know, there's a deficiency in the system. And I wanted to ask, Dr. Stein, as far as you know, are there other medical conditions where people with these illnesses are also dismissed, misdiagnosed thrown aside? Do you draw comparisons to these illnesses? And if so, have you seen any improvement? In other words, can folks with MCS maybe have hope that one day we won't be met with the same level of mistreatment?
Dr. Stein 16:24
I think, unfortunately, it really stems on the development of the discovery of a test of a diagnostic test. And sometimes it depends on a drug company getting involved because they have a lot of money. So I'll give you the example of fibromyalgia. So up until maybe 20 years ago, fibromyalgia was in the same position where nobody really believed it's an invisible symptom pain, and people who have never experienced that severity of persistent pain, and all the other symptoms that go with it, the fatigue and the brain fog, and the unrefreshing Sleep that goes with FM, they just didn't believe that these mostly female patients were actually telling the truth. And it was attributed to psychological maybe these people were catastrophizing, for example, we don't really have a diagnostic test yet for FM, but what we have is two drugs. Well, in Canada, at least two drugs that are approved by Health Canada for use in fibromyalgia, that's totally changed. Now, every family doctor has a basic understanding of fibromyalgia is willing to diagnose it and is willing to prescribe the drugs and a lot of that push came from the drug companies that of course, wanted to sell those drugs that they had spent hundreds of millions of dollars to develop. So I think if something similar were to happen with MCS, either diagnostic test was discovered, and or a treatment and it doesn't have to be a drug. Either one of those will change things very quickly. Okay, so
Aaron Goodman 18:03
I have to just ask you hopeful treatments for Multiple Chemical Sensitivity?
Dr. Stein 18:09
Yes. So I know this is a fraught question. So I'm going to try to say it as carefully as I can. So again, to make a comparison with fibromyalgia, I've just been watching the fourth virtual International Conference on fibromyalgia. And last year, I watched the third one. So it's an online conference, very, very high level of research presented at the conference. And one of the leaders in the field Dr. Daniel Claw. He’s probably my current FM hero. He talked about how it's very, very clear, with hundreds of research studies supporting it that fibromyalgia occurs in part, because of what we call central sensitization, meaning the brain gets more and more sensitive to painful or even non painful physical triggers. And in the field of pain is so far progressed, that we just know this for sure. It doesn't mean that there's nothing else going on in FM, but I'm not going to you know, go into that because this is a podcast on MCS, my belief from my clinical experience, and my own personal experience is that something similar may be contributing to MCs, so it doesn't cause MCS or doesn't trigger MCS that's clearly chemically related. It doesn't predispose to it that's probably genetic. Although now in fibromyalgia, they're finding that there are certain genes or genetic variants that predispose to this central sensitization. And I just heard something new this week in the conference that it turns out women are more likely to develop since central sensitization than men so they're saying that explains why more women have FM than men. More women have MCS than men. And the symptoms of getting more and more sensitive over time to more and more things at lower and lower exposure levels is very suggestive of central sensitization. Also, people with FM and chronic pain who have central sensitization often develops sensory sensitivity. So that's where the overlap comes between MCS and say things like fibromyalgia,
Aaron Goodman 20:28
I wanted to ask for folks who are having difficulty finding a health care provider who will acknowledge and treat them with dignity and compassion. You have any suggestions about where they can go?
Dr. Stein 20:42
It's really tricky. You know, we only have two environmental health clinics in Canada that see people with MCs, one in Toronto, one in Fall River, Nova Scotia, my practice in Calgary, I don't do any one on one work except for some multidisciplinary assessment kind of a one off thing for people who need objective evidence or, you know, often people come to me because they're fighting a disability issue, and they need a report that validates their experience. I offer online courses. So I have an online course called Pathways to improvement. It's specifically designed for people with myalgic, encephalomyelitis, fibromyalgia, Multiple Chemical Sensitivity, electro hypersensitivity and long COVID. It's basically basic self-management. So how to get better sleep, how to pace your activities, what is a healthy diet, how to manage stress and emotional symptoms. And of course, we have a whole session in there on how to live as safely as possible and minimise environmental exposures. I'm going to be starting a new online course in the fall, which is neuroplasticity focused and it's called Healing Through Neuroplasticity. Most of the videos, because I've already recorded them all are focusing on pain. But I would say you know, similar principles could certainly apply and be used for people with MCS if they can get their head around a language that is very pain based. And again, I'm starting with pain because that's where the research is the strongest that neuroplasticity plays a role in the development of the problem and therefore can play a role in the solution.
Aaron Goodman 22:32
Thank you for letting me know about your welcome your courses. And I think it will be of interest to our listeners. And I wanted to ask perhaps if someone goes to their doctor, and they're given a prescription for anti-anxiety medication, I'm sure people will consider that. But in your experience, has anybody been cured of chemical sensitivity by taking prescription medication for anxiety.
Dr. Stein 22:56
Not a single person. But what I would say if you have anxiety or depression and like I say, you know, maybe, maybe as many as 30 to 40% of people with MCS have developed that because of their life circumstances, it's worth considering a medication because it could help you feel better with respect to mood. The problem is that of course most people with MCS are super sensitive to medications. So they're the people that are more likely than others to have adverse reactions. So what I do recommend is if you're willing to try, and you think, ‘Oh, I do have anxiety, and you know, I would feel better day to day if I had less anxiety,’ it's worth trying it but I would work with your doctor and start at like literally 1/10 of the normal dose. I know that sounds drastic. But if people start at the full dose, or even half the dose, they so often have an adverse reaction. And now they're not going to want to try it again. And so now they're kind of cutting themselves off from potentially helpful treatment in the future. So I would say just be really, really cautious with the dose. That may mean discussing with your doctor to prescribe a low dose and then getting it made specially for you at a compounding pharmacy. That would be the way to go. And if even at a low dose, you're having adverse effects, then it's probably not worth pursuing.
Aaron Goodman 24:21
I wanted to ask one more question and then invite you to share anything you like as we move towards wrapping up our chat. The way you've described it, the unpredictability, the difficulty of navigating the world does for me personally create a level of anxiety no doubt by also experience if I encounter you know, an any number of chemicals. What feels like an instant anxiety response in my brain and because I'm not a scientist of any kind, I don't know how to explain it. It doesn't quite feel like the secondary anxiety response because of course, there is sort of like a fight or flight like, ‘Oh, I have to get out of here quickly, how much did I breathe in, etc.’ But is it possible just by the nature of that product that it could create an anxious response, whether it's an inflammation or I don't know what it would be?
Dr. Stein 25:21
It wasn't part of my usually my MCS presentations. But when I talk about, in general, what kind of emotional reactions do people with MCS, fibromyalgia, myalgic encephalomyelitis? Experience and I divided into four parts and one of the parts I call environmental, so meaning exactly what you've just said that chemicals affect the brain, right? You breathe them in. And I don't you know, there's 80,000 chemicals. And I'm not a toxicologist. But I'm sure that there are chemicals that have a direct impact on the brain that cause the neurons to release neurotransmitters, or immune molecules, because we have an immune system in our brain that causes emotional symptoms directly. So I don't I can't quote a paper. But the chances of that, that none of the 80,000 chemicals impact mood would be pretty hard to believe. So I'm, I'm sure that's true.
Aaron Goodman 26:33
Thank you for explaining that. And I want to thank you very much for your time and for sharing everything you've shared, I think it's going to be enormously beneficial for folks who are asking and looking for these answers to some of these very pressing questions which never seem to really go away in spite of the fact that we hear time and time again from or maybe we just need to hear people, credible people like you say it more. So thank you very much for sharing everything you share. Would you like to say anything more before we wrap up our chat?
Dr. Stein 27:05
No, I don't really have anything to say other than Aaron, you know, your podcast is going to be part of the solution. Because I would say up until now, we haven't had many voices, either from patient partners or advocates or from the profession. You know, there's been a few people like Dr. Lynn Marshall, who some of you know, recently passed away, who is just this unbelievable advocate for over 50 years for people with MCs, and her loss is enormous. And it leaves a big gap, which hopefully will attract other younger people to really fight because regardless of the cause of MCS, and I'm one of these people, I just want to find out the truth, right? I don't really care in the end. Is it a psychological problem? Is it a chemical problem? Is it a brain sensitization problem, I don't really care, as long as we have accurate information that will help people get better. So the more voices that are out there, you know, pushing us to try to find out that truth, the better.
Aaron Goodman 28:14
My sense is there is sort of a generation of researchers, physicians, scientists who did an enormous amount of work, they helped create a really important level of awareness around multiple chemical sensitivity. As someone who's looked quite closely at the research that's being done currently, I often feel a sort of level of I don't know how to say it a bit of concern that perhaps there isn't enough or there, there needs to be more research being done because of what appears to be the growing number of folks developing MCS. So maybe as a final question, Dr. Stein, do you have a sense that enough research is being done to keep the conversation going? And if not, what will it take? Because it's not the most well-funded area of research? So what will it take?
Dr. Stein 29:07
Clearly, there isn't anywhere near the amount of research that we need, and even comparing research, for MCS with research in fibromyalgia or myalgic encephalomyelitis. I mean, there's almost none. Basically, I think what it's going to take and again, looking at these other fields, is it's going to take relentless advocacy on the part of patients and the group of people who are sensitive to chemicals is getting larger and larger, almost certainly because the amount of chemicals in our environment is getting greater and greater. It's going to take those people lobbying hard and lobbying smart, you know, working through government organisations, federally and provincially. To make a difference that So what's happened in the other, like, for example, with ME, that I'm quite actively involved in the research that we finally got funded in 2019. So literally after nothing from CIHR for decades, we got a big team grant in 2019. And it was primarily due to decades of advocacy from very intelligent, determined, relentless patients. And I think MCS is going to require the same. It's unfortunate that it requires the victims of the disease to do the hard work. But I think realistically, that's what it's going to take.
Aaron Goodman 30:40
Well, thank you very much. It's an important note to end on. And it's something that I've explored with other researchers. But it's encouraging to see that a lot of people are just being very vocal, expressing themselves online and on social media. And I think that's also really encouraging to see and I hope the powers that be are going to start listening. Dr. Stein, thank you again, for everything you've shared. And for all the work that you do to support people with multiple chemical sensitivity. I really appreciate it.
Dr. Stein 31:14
Thank you, Aaron, and thanks for all you're doing to move things forward.
Aaron Goodman 31:18
That brings us to the end of this episode of the Chemical Sensitivity Podcast. Thank you very much to Dr. Eleanor Stein for taking time to speak with me. podcast is produced by me, Aaron Goodman, Danny Penaloza and Emma Bolzner. We release new episodes twice a month. Subscribe for free wherever you get your podcasts, leave a review on Apple Podcasts, or follow us on social media. Search for the Chemical Sensitivity Podcast or Podcasting MCS. 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 me know email me at firstname.lastname@example.org. And thanks so much for listening.