Rethinking Science to Support People with MCS: Kevin Elliott, Ph.D. on Epistemic Injustice & Research Reform

[00:00:05]You're listening to the Chemical Sensitivity Podcast. I'm Aaron Goodman.

[00:00:09]I'm a journalist, documentary maker, and researcher. And I'm also someone who's lived with multiple chemical sensitivity or MCS for years. MCS is a condition that makes everyday life extremely challenging and unpredictable and it affects millions around the world.

[00:00:28]fragrance, air fresheners, fresh paint, scented laundry products on someone's clothing, and a lot more can trigger exhaustion, brain fog, muscle pain, rashes, and a wide range of symptoms.

[00:00:42]And yet, for all its impacts, MCS remains largely invisible. Doctors mostly dismiss it. Employers rarely accommodate it. Even friends and family struggle to understand. This podcast aims to change that. We dive into the latest research, share real stories, and explore how people navigate life with an illness many refuse to see. In this episode, I'm speaking with Kevin Elliot, PhD. Kevin is the red cedar distinguished professor at Lyman Briggs College at Michigan State University in the United States. I came across Kevin's fascinating paper that he wrote and published this year in 2025. It's called alleviating epistemic injustice in environmental health research strategies from science and values. I'll post a link in the show notes. But in summary, Professor Elliott recognizes MCS as a real health condition and definitely not a psychological disorder. It's something Professor Elliott understands and has thought a lot about because his mother has had MCS since his youth. And it's her illness that motivated Professor Elliot to spend decades looking at research that falsely argues that MCS is in our heads. what he has to say is fascinating and it is that scientific researchers are limited and I would say almost blinded by their own disciplines. In other words, many researchers are not able to see beyond what they've been taught or trained in. And as much as people talk about interdisiplinary research, in other words, scholars from different fields collaborating with each other and understanding complex things, many scholars are still siloed and unfortunately unable to understand MCS.

[00:02:56]So for example, a toxicologist may be trained to consider how a certain amount of chemicals are harmful to human health. And when it comes to people with MCS, toxicologists may not be flexible enough to validate our claims that we often react in significant ways to smaller doses.

[00:03:18]In my own field, communication studies, researchers frequently work in interdisciplinary ways.

[00:03:27]When I've worked with people affected by the opioid overdose crisis, I've incorporated insights and practices from a range of fields including oral history, Holocaust studies, journalism, and more. is I believe when we stretch ourselves as researchers, it increases our capacity to think in nuanced ways about complex issues and mostly I believe working in interdisciplinary ways helps us work with people to create new knowledge and understanding together. What if toxicologists worked with anthropologists who spend time living and collaborating with communities affected by toxic pollution or chemical injury? Wouldn't it be something if brain scientists and neurologists spoke with MCS advocates?

[00:04:23]And how about if any scholar delving into research about MCS took the time to speak with people with MCS, people living with the illness. That to me is of utmost importance. It's unthinkable to me that any research about the condition takes place without involving folks with the illness. I've mentioned my interest in challenging researchers on the podcast who falsely claim MCS is a psychological disorder or I thought about inviting a group of people who live with MCS to counter these claims by discussing their lived experiences and I'm sensitive to how potentially difficult these conversations could be.

[00:05:09]I hope you find that with this episode and conversation with Professor Kevin Elliot that we explore many of these important issues in ways that could give us all insights into what goes on behind the scenes for some researchers when it comes to MCS scholarship. This is meant to be helpful and empowering.

[00:05:33]And lastly, there was a time when research papers on MCS that claimed the condition is a psychological disorder affected me quite a lot. I felt the injustice.

[00:05:44]I worried these papers would continue to influence how clinicians, employers, HR people, even loved ones would see us.

[00:05:55]These days, I'm less bothered by these papers because I've spoken with researchers on the podcast who've dedicated their careers to understanding MCS.

[00:06:07]For example, Professor Lionus Anderson from Sweden says laboratory tests that reportedly show people with MCS are not truly reacting to chemicals were not designed soundly and therefore are groundless. I've spoken with psychiatrist Eleanor Stein who says people with an MCS can have anxiety or depression or other and still have MCS.

[00:06:34]Living with unpredictability of MCS is hard and it impacts our minds. We are the most important sources of knowledge.

[00:06:44]We know firsthand what goes on in our bodies and minds. And we're asking that researchers talk to us and listen. And as you'll hear in this episode, people with other stigmatized illnesses have demanded the same thing. I'm really grateful to Professor Elliot for his work for taking time to discuss it on the podcast. Professor Elliot, thank you so much for joining me.

[00:07:09]>> Oh, it's a pleasure.

[00:07:10]>> Yeah, I'm really excited to talk with you. I think listeners are going to be really resonating with what you have to share.

[00:07:16]>> Yeah, thank you so much. So, in case some of your listeners don't spend lots of time reading philosophy of science, you know, philosophy, I tell my students, is the discipline where we get to ask big questions about everything.

[00:07:28]And philosophers of science get to ask big questions about science. And part of why I was so thrilled to join you is because part of what got me interested in this field to begin with is that my mom actually has dealt with multiple chemical sensitivity and electromagnetic hyper sensitivity for years. And as a child, it was really striking to me as she was trying to make sense of her experiences.

[00:07:55]a lot of physicians didn't really know what to make of it. And so she would be trying various kinds of alternative medical approaches to try to help herself. And so it just raised so many questions for me as a kid wondering why are her experiences so different than what the experts would be thinking and how do you decide who to trust when you're having these situations where people are thinking about something so differently. That kind of got me started thinking about these philosophical issues. And I was so excited that then you reached out. It's really you're, as I mentioned to you before, you're an ideal guest because you combine the lived experience as someone who is related or close to someone with MCS and you've also spent a lot of time thinking about this issue and the wider questions as a philosopher of science. Before I ask you more about your research and your thinking about MCS, do you want to maybe take us back to maybe a moment when you were a young person and you were witnessing your mother trying to navigate and I think if I could be a little more precise, the questions might be relevant for you. I'm not sure about trying to get medical care, trying to seek validation because those were the questions that you began to explore.

[00:09:17]>> What may strike me in this regard are actually some of the more alternative things she did like acupuncture or homeopathy or things like that.

[00:09:26]>> So before we dive into more about your research, do you want to take us back to maybe a moment or two when you were a young person watching your mother? Was she trying to access health care and healthcare validation for her MCS? Was that a challenge? And what were some of her responses in light of the way she was met by healthcare providers?

[00:09:51]>> A really good question. To be honest, I think what was most striking to me is that because more traditional physicians didn't really have solutions for her, she was going to more sort of alternative providers just trying an array of things like say acupuncture or homeopathy or other kinds of experimental things that again I had the sense that at least a lot of mainstream physicians would be pretty skeptical about. And so again, it got me really curious about well, how do we decide what to trust and what do you do if your like personal experience with say some medical solution may not jive with what the mainstream is saying and how to communicate effectively about your experience when it's so different say from what most in the mainstream medical community what they're familiar with and what they're thinking about. It certainly sounds like your mother's experience as you've recounted it matches my own and many others. I believe we have to be very resourceful in terms of finding things, experimenting with things and some things that may work for one person may not necessarily work for us. So it's that resourcefulness. So this is really you mentioned the wider thinking you've been doing and this question is so timely because in my work as the creator of this podcast I look at a lot of research and I'm often struck by disappointingly how often papers writers further what I think is a false argument about the psychoggenic uh basis of this illness that it's a psychological disorder in spite of a great deal of research that points to the fact that MCS is a physiological illness i.e. rooted in the body. Why do you think professor Elliot that the argument persists that it is psychological and we know that this causes so much harm to people with MCS. It has severe and rippling consequences for folks living with MCS.

[00:11:56]Why do you think this argument persists?

[00:11:59]>> Yeah, good question. I don't have all the answers of course but as a philosopher this is an opportunity to bring up something that has been a prevalent idea in philosophy of science that might help us make some sense of this and there's some wonderful work by a philosopher named Helen Longo where she talks about the idea of background assumptions and without getting too technical and boring your guess I think it's pretty understandable the idea is that two people can run into the same data and they can draw different conclusions from that data because they have these different background assumptions or these that sort of influence how they interpret that data. And so you can have somebody from say the medical community run into the experiences of MCS patients, the available data and they may draw say the conclusion that they think it's most plausible that it's psychoggenic.

[00:12:57]Whereas say for the those living with MCS it may be so obvious that the best explanation is that it's actually physiological response to chemicals and I think part of this can be the way scientists are trained in a particular discipline. So again, I'm not an expert on all of this, but I think a lot of like toxicologists are trained to think that when people are exposed to chemicals, there should be a straightforward dose response where the less you're exposed to, you have a certain response, then you're exposed to a higher amount of the chemical, you have a somewhat higher response, and so on. And that it's a nice neat relationship. And my understanding is that with MCS, it's often not that kind of a nice straightforward relationship.

[00:13:41]And so for someone living with MCS, it may seem totally obvious that this is not a psychological phenomenon. But for somebody trained with those assumptions, that's what responses to chemicals should look like. They may say, "Whoa, there must be a different explanation.

[00:13:56]Maybe this is psychological." Um, and so I think it's maybe often helpful >> when people are talking past each other or just so surprised by the different conclusions they're drawing to look and see what are these background assumptions that could be affecting different people's interpretations of the evidence.

[00:14:13]>> I think that's very helpful and what I find is it's very siloed according to discipline. So we often see [snorts] for example a literature review an extensive literature review that people have done in the recent years about MCS but because their discipline is in anxiety disorder or even panic disorder they're really picking sources within that discipline and not looking at other research from environmental health maybe even toxicology or other and so Are researchers really not looking beyond their own disciplines? Because we hear a lot about interdisiplinary research.

[00:14:58]>> I love that point and I have to say when you just described that, it reminded me of the famous story of the joke of somebody who's lost their car keys and they just look under the light from a lamp post because that's where they can actually see. Even though that really may not be where the keys are, I think that there are benefits to being trained within a discipline and you just get such precise knowledge investigating in particular ways. But then the danger is that then you miss out on these other ways of seeing things. And you're right that actually another thing that some philosophers of science are really interested in is how can we facilitate more effective interdisciplinary research because of course we're talking a lot about the fact that we need it but actually succeeding in doing it is really tricky and I completely agree with you that if somebody is trained focusing on say psychological explanations for phenomena then they're going to tend to approach MCS that way and I see that often with other phenomena I look at like endocrine disrupting chemicals. There are really sharp disagreements between different communities on how to interpret the available data. And again, you find that say people trained in endocrinology and people trained in different in traditional toxicology really tend to interpret that data differently. I think again because of background assumptions involved in their training.

[00:16:22]>> This brings up so many raises so many questions for me. One is doesn't this kind of division in science or the way medicine or clinicians researchers look at MCS it goes back decades doesn't it wasn't it the case that when people began to look at MCS they were told by allergists that no you're wrong or your research is unfounded because classical allergy medicine doesn't recognize MCS so what you're saying can't be real.

[00:16:56]>> Yes. Yes. I don't have the expertise in all the history that I would like, but that is my impression that you're right on that. And it again shows how we start our scientific investigations of any topic from within the current what you might call paradigm. There was a very influential philosopher of science Thomas who argued that scientists you know work within what he called paradigms where they have a particular set of questions they ask a particular set of solutions they tend to think about again particular background assumptions particular kinds of experiments they do and so on and so it constrains how they see he actually says they see the world in a particular way because of this paradigm and he says says that shifting out of that kind of paradigm, he says this happens. He talks, he calls these scientific revolutions, but he says it really is like a revolution, like a political revolution where you're actually seeing the world differently. And it's very difficult, he thinks, for scientists to switch from one paradigm to another. To some extent, he actually says that sometimes the old guard just die off and a new scientist with a different way of seeing things start to then take the lead. So I think it could be interesting to think about MCS um and ways of studying it in terms of paradigms and the difficulty of shifting from one paradigm to another.

[00:18:20]>> It's very helpful. I wonder professor Elliot what you make of the fact that often in these papers or the research that claims MCS is a psychological disorder. Often times I see they do not speak with people who have MCS. They don't talk to us. And so how can they come to these conclusions without without consulting people who actually live with the illness?

[00:18:46]>> Yeah. Yeah. I think that is such an important point and it's really significant to me actually and to a growing body of work in philosophy of science that emphasizes the phenomenon of local knowledge that people even if say they're not medical experts that when they live with a particular condition or when they live in a particular place or when they engage in a particular job they gain valuable knowledge about that experience of that condition or that place or bad job. And it doesn't mean that everything they say about it is going to be correct. We all have weaknesses in our knowledge, but it's crucial to at least take that into account. And I wonder if the MCS community might really enjoy looking at comparisons to some fascinating research on the AIDS community when there was research on AIDS in the 1980s and 90s.

[00:19:41]There's been some work by a sociologist Steven Epstein where he traces how initially scientists didn't really engage with those actually experiencing AIDS but the AIDS community engaged in activism and said you need to pay attention to our knowledge of this and they actually had some really great influences on the research. One of my just favorite examples where they actually influenced the details of the science is that some researchers were studying they were doing randomized control trials and they were looking at the impacts of particular drugs for potentially helping those with AIDS. And the activists actually pointed out to the researchers that these studies were not as effective or valid as the researchers thought because the people they thought were not having any drugs in the control group. These patients were so desperate because they were going to die if they didn't get treatment. So if they thought they might be in the placebo group, they were often illicitly getting underground drugs because they felt like they needed to do something. And so whereas the researchers thought they were having these wonderful clean placebocrolled clinical trials, the patients, the actual HIV activists recognized that these trials were not of the high quality that they thought. And in response, they actually started changing the way they did the trials. And so there are other fun examples like that, but it's a great example where you get better results if the researchers are actually communicating with the communities dealing with a particular condition.

[00:21:20]>> And there are other examples of illnesses that are now recognized by science and medicine, right? And if I'm not mistaken, multiple sclerosis, is that one? And and also Lyme disease. Do you want to talk a bit about those cases? Yeah, I don't know as much about multiple sclerosis. I think Lyme disease is really a rich case to consider because it partly is a positive story and partly a complex maybe not so positive story. The positive aspect is again my understanding historically is that you had families, mothers seeing their kids with these health conditions and recognized that there was a serious problem. And the medical community didn't know what to do with it. And if I recall, these parents really pushed to try to investigate, figure out what was going on. And ultimately, they were able to trace it to a bacterium. and then realize okay we can treat this with antibiotics. So that's the really positive story that there was this collaboration initially but then my impression is that as things have played out it probably resembles MCS in a lot of ways where you have differences between the interpretation of a number of folks in the medical community and a number of patients where some patients would uh believe that in some cases the antibiotic therapy isn't actually eliminating the bacterium that they are dealing with and that perhaps long-term antibiotic therapy could be helpful. And you would have some physicians and researchers who might agree to some extent, but the mainstream view would be that if patients are continuing to have trouble from lime that there's some other reason for it. And it's actually a great comparison to MCS in the sense that part of the debate comes down to how to interpret clinical trials. And again, it gets back to background assumptions where the mainstream medical community would say, "Look, we've done clinical trials with long-term antibiotics and they didn't work." And so, we have clear reason to say that lime patients, if you want long-term antibiotics, that's nuts. It's not a good idea. Whereas the lime patients would say, "Well, we're actually not so sure you're interpreting those clinical trials correctly. We think that the way you administered the antibiotics, the details of the treatment that you provided doesn't quite match what you we are actually doing with our physicians.

[00:23:54]Back to your point about individualized treatment. A lot of the physicians that would be working with these patients would be doing very individualized creative sorts of things and that they would say these clinical trials don't actually provide good evidence about the effectiveness of what we're doing. And my impression similarly with MCS is that you would have cases of say like challenge trials saying okay are people living with MCS able to identify say exposure to chemicals and some mainstream medical folks would say ah see we've done the trials we've invalidated your claims but the devil's in the details of how you interpret those challenge trials and so yeah I think it's a great comparison >> I'm really glad you mentioned these clinical trials s because there have been studies where people with MCS have been in laboratories, monitored, exposed to certain chemicals and if I'm not mistaken, there have been assumptions made about the results of those tests that supposedly prove that MCS is not rooted in the body, but it is a psychological condition. But I've been told by other scholars that many of those tests were not conducted soundly that in in other words there were flaws in the ways the experiments were conducted. The laboratories were not designed to conduct these. So the evidence or the conclusions cannot be supported by science. And yet we see research paper upon research paper that cites those flawed studies. And this in your view, is this part of the problem? A, do you agree with me about that these studies have potentially been not conducted soundly? And B, do you think that this has a spin-off effect on the way that researchers continue to falsely say that MCS is a psychological disorder?

[00:25:55]>> Yeah. So I need to be careful as a philosopher that my expertise is limited. But what I can say as a philosopher is that this is a great example. Back to your listeners are going to say, "Wow, Elliot is really excited about background assumptions."

[00:26:09]But I think it's a really helpful concept here because one can better understand the differences of opinion by realizing that what counts as a sound study depends on your background assumptions about say what you have to control for how you need to set it up in order to get valid results. And so one person could look at a study and say wow I think that was designed pretty well. I think it took care of the main sort of issues that could be a problem. I'm I'm impressed. Whatever results, I think I'm going to trust. And another person could say, well, actually, given the nature of what we're studying, it didn't have the right controls, there were some weaknesses in the way it was designed.

[00:26:53]And I think this gets back to our point that you need to have those living with MCS involved in the studies because they might be able to identify certain features of the experimental design that would invalidate it. So, just a simple example that would just come to my mind is somebody who's not experienced with MCS might think that they're engaged in a nice blinded study where you have some people with MCS who aren't being exposed to a worrisome chemical and others who are. But what if the people who supposedly aren't being exposed to a worrisome chemical actually are sensitive to something in their environment and so they're actually reacting too and so you don't get or the person with MCS that you're challenging with the chemical maybe they're already affected by the stuff that they're exposed to in their environment. So then you don't see a sudden effect from the exposure to the chemical because they're already sensitized by things. And so you can have different perspectives on what makes for a good study. And so I think in some ways my hope is to try to help people communicate better by understanding, oh maybe these different groups, one group isn't like just having total ill intentions or one group isn't totally ignorant, but there can be these different background assumptions based on different experiences, different kinds of local knowledge that affect their judgment of what counts as a good study. Some listeners may be thinking, you're absolutely right, but what can we do practically, you know, and it seems like the ball may be in the researchers court and as people with MCS, because of a lot of us, most of us aren't out there doing clinical research. What we can do is encourage researchers to work with us and we can put our hands up and say, "Yeah, we want to take part in this. We want to see this happening." Does that jive with you? And what else can we do aside from being active on social media and telling our stories? What else can we do?

[00:28:57]>> Yeah. Well, that totally jives with me the thought that what we need is to develop these effective collaborations like you say with those living with MCS and the researchers studying it. And the question is how to make that happen. And I think it can be a multi-pronged approach. Again, I think Lyme disease is an interesting example where you have strong activist communities trying to push legislators or others say involved with the National Institutes of Health or so on to try to foster these collaborative efforts because researchers are so influenced by their funding sources. And so if say the funer says, "We want to see you do research that's in collaboration with the affected community and you have to have that collaboration in order to get a grant," they'll go ahead and do it.

[00:29:50]Whereas if the grants are set up so that there's no real pressure to do it and instead they're just encouraged to do their research as quickly as possible, well then they're probably not. Even if they have the best of intentions, scientists are often under so much pressure to be getting more grant money, churning out papers that it can slow things down if they're trying to talk to other people and get a lot of ideas. I think that you all are doing exactly the right thing. Forming groups, advocating and thinking about who you can advocate to to influence funders, whether it be private funders, philanthropic funders, the government funders to actually to incentivize those kinds of collaborative research efforts.

[00:30:35]>> And when you say you, I know you're speaking of the wider MCS community.

[00:30:38]>> Absolutely. Yeah. And there are [snorts] many people who are doing this, many activist organizations who are doing this really great work. [snorts] Is the psychoggenic explanation of MCS fundamentally flawed? I I'll just be honest and maybe this is an interesting point in general that what's most striking to me in terms of why I would indeed reject the psychoggenic explanation is just because of my lived experience with my mother. I don't know enough about the details of the research to be absolutely positive. It's that lived experience of just seeing her encounters with the world with chemicals and electromagnetic radiation to be honest that it just feels so unlikely that one could explain that range of experiences psychologically. But I do understand that the scientists would say, "Yeah, personal experience can be misleading. we can erroneously experience these things. So I understand where they would be coming from. But I think again this is where our lived experience is so significant and maybe why we need a diverse research community. I think that when you have scientists who have had these personal experiences, it changes the way they do their science. I think some of the folks doing really interesting research related to Lyme disease have had personal experiences with it and so on.

[00:32:01]And I see this across the philosophy of science that when all of a sudden more women come into particular fields of science, they challenge assumptions that the men often had. Women coming into pimeatlogy said, "Wow, you've been studying these organisms, focusing on certain male activities, but we can open up whole new ways of seeing, thinking more based on our lived experiences as women. Same with those from different minoritized communities, different races and so on. May they may ask different questions about a kind of research field. And so again, those who have experience this as a lived condition are going to approach this research differently and people who have family members who have dealt with it are going to >> Yeah, thank you for sharing that. There is a very prominent researcher who has done really important research on MCS who lives with MCS and hasn't shared that information with the public which I find quite interesting. Do you have any thoughts on why that could be?

[00:33:02]>> That's an interesting point. Another topic that I investigate in my research is conflicts of interest. So the idea that you may have particular interests that affect how you do your research.

[00:33:15]And sometimes I've been talking about this in a very positive way that like say because you're a woman and have experienced the world in that way that that you may approach your research differently and I've suggested it's a good thing. But there can be worries where say because of one's lived experience or often this comes up with financial things that if you have money to gain based on what you say with your research that it might affect your judgment. And so I could see somebody with MCS feeling like people might think that I have a vested interest in coming to particular sorts of conclusions and they might feel a little bit uncomfortable then about sharing that information because they don't want people to illegitimately dismiss what they're saying. So it it's really a fascinating issue in my research area thinking about how values affect science. The fact that values can affect science in really valuable ways but it can also affect science in some not so valuable ways. And this is something that I'm fascinated to explore.

[00:34:13]>> Interesting. You [snorts] spoke about your mother's experience and I don't know did she feel dismissed by clinicians and you know a lot of us do.

[00:34:21]We go to get medical care. We want to be validated. We need help. We need medical assistance. We're often shrugged off or told it's psychological. They can't do anything with us. And you frame this.

[00:34:33]You call this, if I'm not mistaken, a form of epistemic injustice. Do you want to talk a little bit about this?

[00:34:41]>> Sure. Yeah, absolutely. So, this is a a concept that philosophers have been talking about a lot recently. And epistemic sounds really fancy and complicated, but it's just a way of talking about knowledge. And so, normally when we think about injustice, it's kind of an ethical issue. We're treating somebody unfairly. We're not giving them their due. And so it's a fascinating idea to stick these two ideas together, knowledge and justice.

[00:35:10]One of the key philosophers who started talking about this, her name is Miranda Fricker and she wrote a book on this and then a whole bunch of people have developed this idea further. But the thought is that maybe sometimes we don't give people their due. We're not fair to them as knowowers. And there are different ways this could play out, but maybe the one of the most simplest ways is just that I might have some sort of prejudice against somebody. And so I don't take their testimony about their experience seriously. And I think in the medical context, a lot of people have found this to be a fruitful idea because notoriously the medical profession has often not taken women's testimony seriously. There's a long history of saying that women are hysterical and so on. And of course, women tend to disproportionately experience chronic diseases that the medical community is often not as able to make sense of. And so the worry is that there's a lot of potential for not giving them their due in terms of taking seriously their explanations of their experiences. And if I could add one other piece, Fricker talked both about what she called testimonial epistemic injustice, but then she also had this other term, and it sounds even more complicated, hermeneutical epistemic injustice. But it's just a fancy way of saying that somebody might not be taken seriously because we don't have a good conceptual framework to make sense of what they're saying. And the example she gave was say you had somebody who had been sexually harassed and this happened 50 years ago. Society didn't really have the terminology of sexual harassment. So they might feel like they had a really weird experience with somebody that made them feel extremely uncomfortable, but they wouldn't have had the label of sexual harassment to put on that experience. And it might be difficult to then get people to take them seriously.

[00:37:11]And I think that is also relevant with some of these medical conditions like MCS. If we don't have a good conceptual framework for making sense of what's happening, maybe we don't understand all of the mechanisms or they're not well accepted. It's not a paradigm say for the scientific community that then when patients try to explain to their doctors their experiences even if the doctors are trying to be good naturatured and pay attention that neither the person with MCS or the doctor has the right conceptual framework to make sense of what's happening and so then I think that points to the need to do the research to actually equip them to have the concepts they need.

[00:37:53]>> Absolutely. Absolutely. And this is something I've been thinking about because someone I talked to on the podcast recently talked about concealment. We're often concealing the level of suffering we have, the degree of our symptoms, the way we're debilitated with friends, even with loved ones, and in medical visits were not seen. And I wish there were more research. I would feel less less um anxious about being open about my illness.

[00:38:25]>> Right? Let's shift gears a little bit if we could. The debate around the name for this illness, it goes by several different names. Multiple chemical sensitivity, MCS, tilt, toxicant induced loss of tolerance.

[00:38:41]Also, idiopathic environmental intolerance or illness.

[00:38:46]What do you make of this debate over the name? And do you have a preference for one over the others? And what kind of impacts do the names have on clinicians and on research?

[00:39:00]>> Yeah. Well, I find this fascinating because one of the things I'm interested in as a foster of science is how particular research choices can be what I call value laden. And it could mean that people have values and because of those values they choose particular research choices. Or it could also be that they just make these choices for whatever reason, but it has an impact on things we care about. And I think choice of terminology is a great example where it may seem like just an innocent choice to use one term for MCS as opposed to another, but I think that choice is valuel laden. Maybe it could be that people are deliberately choosing one term versus another. But for sure, no matter what their intentions are, these terms can have an impact on how people perceive the condition. I haven't thought enough about toxicant induced loss of tolerance to to know for sure whether I prefer that to MCS. I will say one interesting thing about the tilt is that it does refer to a little bit more of like a mechanism. My understanding is that I think Dr. Claudia Miller has especially done work on that and I think she's been trying to explore some of the underlying mechanisms that could result in that. And so I think it is much more convincing to the scientific community if they're not just seeing a correlation or they're just hearing about effects, but if they actually can see a mechanism, a causal story for why these things could be happening. So if using a term like tilt helps move the community in that direction, then that would be I think a reason to potentially use it. As for EI, idiopathic environmental intolerance or illness, I'm not such a fan of that term. And it's been a while since I've used this or investigated it, but I think that could actually be value laden in multiple ways that those who developed it, I think, wanted to kind of distract attention from the role of chemicals in producing it. think that they were trying to push more for a psychoggenic explanation. And so if you say that this environmental intolerance is idiopathic, it's unknown. That kind of encourages that idea. And so then it has effects on society. It's valuated in that regard because it may make people more skeptical. And I mean, I think they would of course argue MCS is presupposing that the chemicals really are causing it. So they would complain about that. Ultimately, we have to make a judgment about which impacts we would prefer to have. And I think it is a value laden choice. And I'll just mention quickly the same thing happens with electromagnetic hypersensitivity that there's been recent discussion to potentially use the term EMR syndrome.

[00:42:03]Maybe there are some senses in which talking about a syndrome has different resonances than talking about hypersensitivity. Maybe it could capture a broader array of phenomena. So that could be an advantage of it. And I do think there are some who want to use the language of like idiopathic environmental intolerance related to electromagnetic fields. And so they like to use that label there as well. So I I just think that it's really important to think about these labels and it applies in other cases as well.

[00:42:33]If I can mention even thinking about our experience with COVID recently.

[00:42:38]Originally we were referring to variants based on parts of the world they came from the Brazil variants or things like that and then there was this realization wow this can have stigmatizing effects and maybe it's better to use terms like the delta variants or omega or so on the issue comes up also with diseases like referring to I think Marberg virus or marberg syndrome or things like that the world health organization has been trying to move away from that our choices of language age really are powerful and can affect society.

[00:43:11]>> Yeah, absolutely. And I think a lot of people do think about the way we refer to this illness. You may have touched on this, but when it comes to MCS, we know that it's more than a sensitivity for many of us. So sometimes people can suggest that we're just being over sensitive. For so many of us, it's really debilitating. It's not just a mild sensitivity. It's not just a mild inconvenience >> that strikes me. And that's an interesting point about the potential value of a term that that doesn't use sensitivity because of the way it could be misinterpreted by some. that struck me with Lyme disease where say some of what I've read there people with long-term symptoms from lime, you'll hear about certain symptoms like brain fog or fatigue or memory loss and it may not sound so terrible and then you read about the details of people's experiences and you realize just how devastating and debilitating it is. And again, my mom experienced this at some times in her life where her brain just wasn't working for a year or two and it was just awful for her where she just felt like she couldn't think properly or could hardly get out of bed with devastating headaches and so on. So, I completely sympathize with the fact that terminology can potentially take away from the devastating aspects of these experiences.

[00:44:31]>> You have such vast knowledge in so many areas of this illness of MCS. you're it's been such a delight to speak with you and to learn more about your research and to share it with folks. Do you ever meet others other researchers who share the passion for looking at these questions when it comes to MCS? I imagine you're fairly solitary in this world and if so is there hope that there will be others younger researchers who will come on board and look at MCS in detailed wider ways in the way that you have.

[00:45:09]>> That's a great question and I think it actually gets back to that issue of of personal experience. I think it really depends on whether you have other people with those kinds of connections. I will actually also say though that I think sometimes when you have people working in science who are maybe outside the mainstream, I think that it often causes them to want to ask some of these broader philosophical questions. So I do often talk with scientific researchers who feel like why is nobody listening to me? Why am I so outside the mainstream?

[00:45:45]and it does make them start to ask these kinds of philosophical questions. So you may have people who don't immediately start out in philosophy but actually start asking some of those philosophical things >> and many more people will develop MCS unfortunately. So maybe more of them like you will take up this research.

[00:46:04]Yeah, we've been talking about background assumptions a lot and there's another philosophical concept that I think might be really helpful for this community and that's the idea of what are your standards of evidence. How much evidence do you want to see before you're willing to draw a conclusion? And this could also be helpful for people trying to understand why so many researchers might assume that MCS has to be psychoggenic because for somebody living with MCS, they might say, "Look, I've seen more than enough personal evidence to conclude that this is not psychologically caused." But the scientific community often really doesn't like to make false positive errors. And that's kind of a fancy way of saying they don't like saying something is the case coming to some new conclusion and then being wrong about it. So they can be very cautious and may want to see a lot of evidence whereas that actually might not be appropriate in other areas of life where say for somebody living with MCS it probably doesn't make sense for them to demand so much evidence before they start doing things to try to protect themselves from chemical exposures. And so it might just help to again make sense of different communities and we face this in different areas of life. Say you're fighting to be able to get insurance coverage for particular things. You've got to consider the insurance company may say we want to see a lot of evidence before we're willing to provide reimbursement and but for the patient perspective it may feel like whoa there should not be such a high bar or accommodations and so on. And so this is a really I think an interesting concept that philosophers have again been thinking about how we need to think about how much evidence to demand before we're willing to take particular sorts of actions or accept particular sorts of claims. And different people because of the costs of different kinds of errors.

[00:48:00]Some people may be willing to accept much lower evidence and others might say no I really don't want to make that kind of error where I accept something and then I'm being wrong. I'd rather not accept it and be wrong.

[00:48:11]>> And what if we had biomarkers? What if we could go to the doctor or the ER or do a test on our own to measure when we're having a reaction? You know what?

[00:48:24]Perhaps the inflammation in the brain or the body. I mean, [snorts] a doctor asked me to take a picture of my tongue because my tongue gets inflamed. Could we measure the thirst that I feel? Could we measure fatigue? Because would that help to prove this if we could actually measure it?

[00:48:40]>> I think so. I think you're absolutely right that that's like an example of providing more evidence that and again providing if we can further our understanding of the mechanisms underlying MCS. Again, that's more evidence. And I've talked to one philosopher who thinks a lot about this.

[00:48:59]Uh her name is Heather Douglas. And she says that when we're having debates over these kinds of issues, it may be a helpful to even ask our interlocutor, what kind of evidence would you want to see in order to accept this? What kind of study would convince you? What kind of biomarker would convince you? And I think that might be a fruitful question sometimes to then think about how can we then provide that kind of evidence >> in the absence of that availability. We long for that, but it's not yet a reality for us. Not yet available. We need clinicians and researchers and our loved ones and employers and HR departments to take us at our word. And because I think this is what you're talking about. That's why we run into challenges. Is that right?

[00:49:48]>> Yeah. And maybe I would also point out that this is ultimately an ethical issue of how much evidence one needs in order to take particular actions. So say an HR professional may not be totally convinced. But one could get them to think well look if we're not sure is there enough evidence that from an ethical caring perspective we should go ahead and provide particular accommodations. It may be a long time before we fully understand this, but maybe there's enough there to go ahead and take these steps to be compassionate for people who are living with this. So, I think it's helpful to think about how much evidence do we need to take particular actions even if we don't know the ultimate truth about these things.

[00:50:32]>> You've been listening to the Chemical Sensitivity Podcast. I'm the host and podcast creator, Aaron Goodman. The Chemical Sensitivity Podcast is by and for the MCS community. The podcast is generously supported by the Marilyn Brockman Hoffman Foundation and listeners like you. If you wish to support the podcast, please visit chemicalsensitivitypodcast.org.

[00:50:55]Your support will help us continue making the podcast available and creating greater awareness about MCS. To learn more about the Chemical Sensitivity Podcast, follow the podcast on YouTube, Facebook, X, Instagram, Blue Sky, and Tik Tok. And as always, you can reach me at [email protected].

[00:51:15]Thanks for listening. The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman made possible with funds from the Marilyn Brockman Hoffman Foundation supporting efforts to educate and inform physicians, scientists, and the public about multiple chemical sensitivity. The content, opinions, findings, statements, and recommendations expressed in this chemical sensitivity podcast and associate website do not necessarily reflect the views and opinions of its sponsors.