Aaron Goodman: [00:00:00] How do medical classification systems shape whether an illness is recognized, counted, and treated as real? For people living with Multiple Chemical Sensitivity, or MCS, this question is not abstract. Recognition can affect medical care, housing, workplace accommodations, public policy, and whether people are believed when they describe the effects of chemical exposures on their lives.

[00:00:31] In this episode, I speak with Professor Geoffrey Bowker, a scholar of classification systems. He's co-author with Susan Leigh Star of the book “Sorting Things Out: Classification and its Consequences.” It's about categories and standards that shape what institutions can see and what they often miss.

[00:00:56] Professor Bowker's work is especially relevant to MCS [00:01:00] because he has studied medical classification systems, including the International Classification of Diseases, or ICD. His research asks how systems for naming, organizing, and tracking illness affect people whose experiences do not fit easily into existing categories.

[00:01:21] Together, we discussed why MCS can be so difficult for medical systems to recognize. We talk about classification, biomarkers, chronic illness, environmental exposures, and the challenge of creating a common language for conditions that are described differently across countries and medical cultures We also explore why patient knowledge matters.

[00:01:45] Many people with MCS keep careful records of symptoms, exposures, buildings, products, and environments. Professor Bowker reflects on why this kind of lived and collective knowledge is often overlooked by healthcare [00:02:00] systems, even when it may be essential to understanding chronic and environmentally linked illness.

[00:02:07] We discuss the limits of medical systems built around short appointments, lab tests, and acute conditions, and what MCS reveals about the hidden assumptions built into homes, clinics, workplaces, schools, transportation systems, and public spaces. This conversation is about MCS, but it's also about a broader question: what happens when people are suffering, but the systems meant to classify and respond to illness are not built to recognize their experience?

[00:02:37] Please check out and share a link to the podcast's new website. It's listen.chemicalsensitivitypodcast.org. It's easy to introduce friends, family members, healthcare providers, researchers, policymakers, and others to conversations about MCS. And please subscribe to the podcast wherever you get your podcasts.[00:03:00] 

[00:03:00] To learn more, follow The Chemical Sensitivity Podcast on YouTube, Facebook, X, Instagram, BlueSky, and TikTok. And you can always reach me at aaron@chemicalsensitivitypodcast.org. Thanks for listening. 

Thank you so much for joining me on the podcast. 

Geoffrey Bowker, PhD: I’m delighted to join. This is such an interesting set of issues, but I realize more than interesting for many people.

[00:03:25] It's a cause of suffering. 

Aaron Goodman: I invite you just to share briefly why you accepted the invitation, why you think your research is relevant for the listeners who have MCS, as well as researchers in the field, policymakers who are looking at this issue. 

Geoffrey Bowker, PhD: For many years, I worked with my then partner, Susan Leigh Star, who unfortunately has died, on a book on medical classification systems, where we looked essentially at ICD-10 and also at nursing classification systems.

[00:03:53] We put out a book that was meant to show the social and cultural aspects, [00:04:00] dimensions of classification, the difficulties that many people experience when they didn't fit within the classification system. That was one of our core insights, UD. Both they're not really classification systems, they're more nomenclatures.

[00:04:15] What does that mean in terms of understanding, tracking illness, tracking epidemiology, and tracking diagnosis? 

Aaron Goodman: You look at classification in all kinds of illnesses. Why does MCS interest you? What stands out to you about MCS in particular?

Geoffrey Bowker, PhD: [00:04:33] Well, the first is a very, is a very personal story. My partner, Lee Stiles' former lover, Pamela, had intense MCS. She's a photographer. She moved down from the Bay Area to be in San Diego and teach at SDSU a number of years ago. And Pamela basically had to get a house built from scratch because anything that she moved into, [00:05:00] any edifice that she moved into, was going to trigger her sensitivities.

[00:05:05] That's what really made me aware of it. The other reason, it falls into a very interesting category for me. With respect to MCS, what's really interesting for me about that is this is a critique that Lee and I made of the ICD in our book on classification, was that the ICD is absolutely terrible about environmental factors.

[00:05:26] It wants specific causes of disease at specific sites. So if you have long-term chronic exposure, low-level exposure to something, th- this is not a mechanism which is geared to recognize that as a possibility. Your own biography gets talked, it gets twisted because you get put into, "Oh, that's a psychiatric disorder."

[00:05:50] "Oh, that's an allergy, specific allergy." "Oh, that's this, that, or the other." We were really interested. Environmental conditions are absolutely central there. [00:06:00] That's what was interesting to us about it as a category, is exactly that. It doesn't fit. It should fit. 

Aaron Goodman: Was it this individual's experience of being misdiagnosed, being told that it was a psychiatric or psychological condition when it was MCS?

[00:06:18] Was that part of the motivation for you? 

Geoffrey Bowker, PhD: Yes, and Pamela's case really affected that for me in thinking about it. It's taking people at their own word, and that inability of the medical profession to take people at their own word. That's a fundamental fault with, I think, a lot of medicine. The doctor knows best.

[00:06:44] No, they don't, not necessarily. These sorts of questions have been central to me for a long time. How are diseases created categorically, and who decides what gets included?[00:07:00] 

[00:07:02] There are many diseases that sort of, you know, were recognized very widely that get grandfathered in. The difficulty with the International Classification of Diseases, the ICD, when it was trying to put together a full international classification, was something that is very much the case with MCS.

[00:07:22] Things are diagnosed very differently in different countries. So you need to agree on a language because you can't create epidemiological statistics, you can't do good policy work without having agreement about language and agreement about what the, what the diseases are. To get into the ICD is generically, it's been what doctors say, basically.

[00:07:44] That has left a huge number of orphan conditions, though, and there's a number of orphan conditions that are related to, to MCS, such as sick building syndrome and CFS, possibly chronic fatigue syndrome. There are all of these syndromes. [00:08:00] Now, to get a syndrome recognized as a disease is really, really difficult, and often takes a lot of work on the part of sufferers to say, "Hey, look, you know, what's going on here is real.

[00:08:13] You need to pay attention to it." Because the nature of the ICD, there is at least three kinds of nomenclature there. One is, let's identify the disease agent and talk about the relationship between disease agent and symptoms. That's relatively easy. Measles, chickenpox, you can do that. Another is to say there is a range of possible symptoms, but they're not all going to appear in the same person at the same time.

[00:08:42] It's more like a Chinese menu of do you have one from column A, one from column B, one from column C. You'd appreciate that mostly from things like the Diagnostic and Statistical Manual about, about psychiatric disorders. You really need the patient groups saying, you know, "There is something that is [00:09:00] really happening here."

[00:09:01] Third is, suppose we get a miracle cure for something, I mean, like SSRIs and depression was supposed to be a miracle cure. Then basically we define depression largely in terms of what drugs are successful in treating it. So it's the outcome rather than the doctors. Psychiatrists don't understand what depression is.

[00:09:25] They don't understand the difference between depression and anxiety. But they know, well, Xanax works for anxiety, SSRIs works for depression. So really you're using the cure as a way of defining the disease. But it's really between those first two, I think, that MCS comes to the fore. I often wonder, is MCS an illness?

Aaron Goodman: [00:09:48] Is it a condition/conditions? You mentioned the term disease Which one is it, and does it matter?

Geoffrey Bowker, PhD: [00:10:00] First of all, you make me flash on that great quote from The Big Lebowski, "I wonder what condition my condition is in." Conditions are really hard to describe. The differences it makes is quite huge, the differences in terms of outcomes.

[00:10:21] When I was a kid, I remember, "Well, what is condition?" "That's just a woman's condition," or, you know, "That's just an ex's condition." So it's unrecognized by the medical profession, therefore it must be in your imagination, therefore it's not real. I think that can have devastating consequences for people who are genuinely suffering from something which is just not being recognized.

[00:10:44] Now the question is, what are the available treatments? And the treatment issue is where the outcomes really matter, is can you show that if you accept the diagnosis [00:11:00] of MCS, that can then lead to policy decisions both about how we build homes and how we deal with volatile organic compounds on the one side, but also treatments with specific patients on the other.

[00:11:14] So classification, there are a number of factors that go into determining whether it is accepted as an illness or disease. The, the biomarkers, that can help with MCS. Usually there aren't biomarker tests, but there are also other factors that go into this that you write about, political influences. I'm sure there's economic interests.

Aaron Goodman: [00:11:43] Do you want to help us understand what are some of the forces that go into this process of whether or not an illness/disease is recognized? 

Geoffrey Bowker, PhD: Well, sort of in the news today, you know, what has, [00:12:00] kind of Trump done with respect to California's clean air laws, he's trying to destroy them, and he's trying to do a lot more, you know, oil development offshore.

[00:12:11] There's a lot of evidence that environmental toxins are really, really huge, that, you know, and MCS is just, if you like, the, the tip of the iceberg with respect to environmental toxins. In our political system, and especially in the last few years, but generically, our political system is not very good at recognizing environmental toxins and environmental conditions because, um, that would put a brake on growth.

[00:12:41] That would put a brake on development. So the interest of the politicians is always to say, poo poo it, and say, "No, it's in your head. No, that's not real," or, "No, that's highly distributed," where in fact it can be shown to be much more regular than that. But then- You know, the question that [00:13:00] rises then on the part of the policymakers and the politicians, it's sort of like the question of, you know, what is it, the fish in a Sacramento River down from the Sierras to the Bay Area.

[00:13:11] And the question was, do we save a particular fish that's in this area because of the, you know, possible pollution within the Sacramento River? Well, generically, capitalism just wants to go on, you know, and then there are losers. You know, there are people who are gonna suffer. So I think politically there's a strong argument, and w- we've both got a welfare state of saying we should care about everybody.

[00:13:37] But there's also a state in which we're saying, look, the greater good is actually economic growth. So the greater good is actually more plastics in the environment. The greater good is more of these toxic chemicals, and a break on toxic chemicals is a break on economic growth, and that's a really difficult argument to counter, but w- [00:14:00] one which fundamentally must be countered.

Aaron Goodman: [00:14:02] You mentioned the World Health Organization. Is WHO the key organization that would make a difference if, if the WHO recognizes MCS as a real physiological illness? Would that have a trickle-down effect? Would then it be recognized more broadly? 

Geoffrey Bowker, PhD: Well, absolutely. I mean, the WHO is central. It's still having, you know, largely control over the ICD.

[00:14:27] The thing to know about the International Classification of Diseases, it arises partly out of the insurance industry in the late 19th century when they wanted to work out actuarial tables. You know, who's gonna die early from what? So the insurance industries were ahead of the medical industry in terms of diagnoses and defining diseases.

[00:14:51] The WHO has, has had this centralized, central role for the longest time. They are the people who coordinate [00:15:00] between all of these different countries who describe conditions in different ways. You know, anemia is defined very differently in Europe and in America. Um, and in the same way, heart disease tends to be classified differently in Japan and America.

[00:15:19] So what you desperately need if you want to build up A global vision of something is a common language. I think was the leader, uh, Spain was one of the first to recognize MCS. New Zealand, I think, was the third one. But if in each of the three countries were using different terms and different descriptors and different markers for exactly the same condition, then there's no way that you're gonna get a global policy or a global understanding of it.

[00:15:51] So yeah, I think the WHO is absolutely central. 

Aaron Goodman: You mentioned the different ways of talking about MCS. Are you referring to the number of names for the illness, [00:16:00] multiple chemical sensitivity, environmental illness? You mentioned sick building syndrome, toxicant-induced loss of tolerance, TILT, chemical tolerance, and others.

[00:16:10] Is that part of the challenge here? 

Geoffrey Bowker, PhD: Well, it's absolutely the issue. It's absolutely the issue. Lee and I referred to, to Adrian Rich, the poet, the dream of a common language. You know, that, um, and the dream of a common language. We've gone much less global in the last 10 or 15 years in terms of our politics globally.

[00:16:32] But to really address health issues, you really need to be able to work across many cultures, you know, many medical cultures, many social cultures, many political cultures. Um, and that's, that's, in a sense, that's the only way forward. You can't say, "Well, we have, you know, one MCS for Spain and another MCS for [00:17:00] Japan."

[00:17:00] That, that would be crazy. You've got descriptors that come from, say, Spain and Japan, which are actually quite different, then it, it's difficult to show that there is a condition that should be treated, that should be addressed. 

Aaron Goodman: Does it come down to biomarkers? Is that really the most helpful thing when it comes to whether a condition, illness, disease is recognized or not?

[00:17:30] But, uh, with MCS, mostly there aren't biomarker tests that we can do, and is that part of the problem? Is that why it's mostly not recognized? 

Geoffrey Bowker, PhD: Yes. I mean... All right. Well, let me give you another issue, which is, I think an overarching issue, which is one that, you know, again, my partner Leigh spoke about a lot, is chronic conditions.

[00:17:54] Western medicine, allopathic medicine is extremely good at acute conditions. [00:18:00] I mean, you know, I break my leg, they deal with it. You know? I get COVID, they put me in an oxygen tent and, you know, feed me various drugs, and I'm fine. Chronic conditions, I mean, Leigh had back pain for 35 years of her life, neck pain, which was undiagnosed and undiagnosable.

[00:18:23] Leigh used to say, it was, she had this lovely phrase about her disability there was, "I wish there was an outward and visible sign so that people could see the pain I was in, so people could recognize it." Now, the trouble with something like MCS or, you know, fibromyalgia or, you know, chronic neck pain which is undiagnosed, is there's no outward and visible sign.

[00:18:51] There is no necessary biomarker. That doesn't mean that it doesn't exist, but it does make the push for recognition much [00:19:00] more difficult within a system of medicine that does not deal with chronic conditions. Can you think of one chronic condition which is well dealt with by the medical community? I mean, I, I certainly can't.

Aaron Goodman: [00:19:20] People say that it's difficult living with the symptoms of this condition. What's also deeply challenging is not being believed by healthcare workers, clinicians, and people in our lives 

Geoffrey Bowker, PhD: No, I think that's absolutely right. I mean, it's horrible. I went for my generic annual checkup two days ago, which is fine.

[00:19:43] Do you know what the checkup consisted of? It was basically, you know, "Here's some lab tests we want you to do." All they were interested in was in my blood. Were no questions about my living conditions. There were no questions about my environment. There were no questions about the [00:20:00] fact that I'm living alone and divorced or whatever.

[00:20:02] There was nothing about my life that was of interest to the doctor. All they wanted to know was the blood tests. And yeah, you know, in a sense you see why they're doing it. They're batch processing. They've got lots and lots of cases. They need to go through them, and it's possibly good for the majority of the people.

[00:20:22] But that still means that it fails minorities on a very, very regular basis I'd like to build on that please. 

Aaron Goodman: You mentioned minorities, and we know that minorities, racialized people, African Americans, Indigenous people are disproportionately affected by exposures to toxic chemicals. And yet the awareness of MCS in these communities from my interactions appears to be quite limited

[00:20:55] And do, do you wanna talk a little bit about MCS [00:21:00] and minorities?

Geoffrey Bowker, PhD: [00:21:05] That's a lovely question. I mean, the largest minority on earth, it's odd that we call a minority, is women, because I think women are, what, 52% of the population. But generically, Western medicine is, you know... I mean, the drug testing regime was, well, let's test, let's test, test against fit males, 'cause that's what really matters.

[00:21:26] You know, crash test dummies that were used for car safety, they basically used the average size male as the crash test dummy. So we're always taking the ideal body as being the body of basically a white guy who grew up in the West. And to call that an average body is l- is, you know, is just, like, really, really weird.

[00:21:53] Um, but if you get something which is specific to a minority community, I'm talking [00:22:00] minority in racial terms, ethnic terms here, not in, not in terms of diagnostic. It's so easy just to sweep it away, to say it doesn't matter, and I think that's a huge problem within... You know, that, I mean, that, you know, that is a huge problem.

[00:22:16] I'd be interested in your reaction to this. It's funny that we accept so many specific allergies. There's peanut allergies, there's gluten, there's all of these allergies that have built up one on top of the other. We accept so many specific allergies, but if it's an array of chemicals, again, it's the, you know, acute versus chronic.

[00:22:32] The acute, yeah, all right, you know, you're allergic to peanuts, therefore no peanuts on the plane. Fine. Um, you know, core response. There is no core response for

[00:22:38] MCS, so even though it's a real condition, the, you know,

[00:22:51] there is no[00:23:00] 

[00:23:00] marker, there's no simple marker, and there's no simple solution. Many people with MCS keep detailed records of symptoms, exposures, and environmental triggers. 

Aaron Goodman: I wonder if you think healthcare systems could do a better job recognizing the embodied knowledge we have, and what a more just and inclusive health information system could look like.

Geoffrey Bowker, PhD: [00:23:26] Absolutely. I mean, one of my feelings on that is, is going back several years now to Patients Like Me. It was one of the first kind of crowdsourced medical platforms, and it was fantastic 'cause Patients Like Me would get people who are actually suffering from something and be able to talk together about it, and they had so much more knowledge than the medical profession.

[00:23:51] Let me give you one example. My mother-in-law was dying of a relatively rare form of kidney cancer, and her doctor, to [00:24:00] be honest, her doctor knew shit about it. I mean, he wasn't a specialist. She joined Patients Like Me, and she found across the country, across America, she found maybe 100, 200 people, that's not a lot, who had the same condition and were getting the same treatment, and the knowledge that they shared was just fantastic.

[00:24:22] It was so much more than her doctors could possibly provide. And I remember a simple one for her was with some of the chemotherapy they were using, it was having really deleterious effects, and someone in the group said was, "Yeah, you should just drink orange juice, and that really helps." Can you imagine a doctor saying that to you?

[00:24:42] I mean, a doctor wouldn't know that unless they'd had double-blind clinical tests. Whereas someone in the patient group was saying, "Yes. In this case, I've found that orange juice helps." You know, a set of patients together who are [00:25:00] really connected together often have a much, much better understanding of the condition than the medical profession does.

Aaron Goodman: [00:25:11] I 100% agree with you, and we see that with MCS people and how we come together online particularly. And then I feel like there's a bit of a disjuncture. For example, when I, I recall a moment a few years ago going to a doctor and sharing that I was having some success managing symptoms by taking supplements, and the doctor had a very oppositional view to supplements in general.

[00:25:36] She had a lot of authority I find it, doctors do have a lot of authority. 

Geoffrey Bowker, PhD: When I was growing up in the 1950s, it was a somewhat different conception of a doctor. I mean, sure, I was middle class and living in England, but doctors often paid house visits. The doctors knew the home f- whole family, they knew your [00:26:00] home.

[00:26:00] I mean, can you think of how useful it would be if you had a medical profession that ever took the time to come to your place? You're always going to their place. Their place is a sterile environment. I mean, yeah, that's all very good, but it means they're not seeing Watch it. They're not experiencing what you experience, they're not seeing what you're seeing.

[00:26:26] And with that voice of authority, it's not really a voice of authority, it's a voice of dismissal. It's saying, you know, we... Unless it's in my immediate line of sight, I can't see it. Well, that's just bullshit. And what happens often is the misdiagnosis or we're told that it's all in our heads or a psychological condition, and it's very, very damaging.

Aaron Goodman: [00:26:52] You write about infrastructural blind spots. How infrastructure, infrastructures become [00:27:00] invisible when they fail? I mean, what can the experience of people with MCS teach us about the hidden assumptions built into buildings, workplaces, schools, transportation systems, and public spaces? That's a lovely question.

Geoffrey Bowker, PhD: [00:27:16] I mean, first of all, a quick correction that we say that infrastructures become visible when they fail. They're invisible when they don't fail. It's sort of going over ground we've already talked about so far, so I'm trying to say something new. I mean, the infrastructure blind spots, as I said, chronic disease, we can't deal with.

[00:27:38] We can deal with specific issues at specific spaces at specific times. And there are whole sets of infrastructural blind spots. I mean, that's where I put, you know, all of these issues, you know, which have various degrees of belief or [00:28:00] non-belief in the diagnosis, but, you know, you know, uh, MCS, autism spectrum disorder, um, you know, chronic fatigue. . .

[00:28:13] And what's the one? Lyme disease was another one that was really interesting several years ago. And there are ways in which the infrastructure that we build, it doesn't get rewarded for that. All right. Let me give you a really simple example. Um, I deal for my sins, for my health, with Kaiser Permanente in California.

[00:28:37] And, um, you know, Kaiser is well known as treating its doctors very well. It treats its nurses very badly. Um, you know, but Kaiser, um, they have something like a 10-minute rule for an appointment. You go in to see the doctor, the doctor is sort of, you know, is, you know, [00:29:00] is sort of rewarded on, you got him in and out within 10 minutes, you know?

[00:29:05] Whereas if you really want to understand something like MCS, you gotta have an hour Um, but the, the doctor, while she is spending an hour with you, you know, has got all these other patients, she's got all this other pressure, she's got her own timeline. So it's like, no, it's not in her interest to spend an hour with you because for the greater good of the majority of her patients, 10 minutes is enough.

[00:29:36] Um, I mean, that's a severely flawed medical system. I mean, it's a horrible medical system, but it's one I live under. Um, you know, but again, I mean, MCS would involve a doctor really paying attention to you. Um, and doctors pay attention to two things. I mean, you know, one is, well, obviously diseases that, you know, that, you know, the, the, [00:30:00] you know, that, that might turn into like an epidemics.

[00:30:02] They also love highly specific diseases, I mean, weird diseases which can attract lots of research funds. What they're uninterested in is chronic conditions that they would need to spend time with. Um, and you know, that, that for me is a, it's a huge political point in our relationship with the medical profession right now is they should spend more time with us.

Aaron Goodman: [00:30:29] Some research shows that up to 36% of the population in the US reports some degree of MCS. And at what point, in your view, does MCS become an epidemic? 

Geoffrey Bowker, PhD: Well, it's already an epidemic. I mean, there's no question about that. It's one of the difficult points in which you've been pushing me a few times very well during this conversation, is recognizing it's an e- epidemic, and then saying, "Well, what can we do about it?"[00:31:00] 

[00:31:00] And it, you know, it's that relationship between the recognition and the policy which I think is really difficult. It's like all the stuff about forever plastics right now. Know I have forever plastics in my body. I know that forever plastics can go through the blood brain barrier. That particular case is a little bit, for me, the same as in ancient Rome, you know, where they said the fall of the Roman Empire was based on lead poisoning because they used lead pipes for their water and, you know.

[00:31:36] We know that lead in the pipes for kids when they're young, that can affect brain development. So there's a strong argument that, that it's that environmental cause that actually, you know, killed the Roman Empire. 

Aaron Goodman: You’ve mentioned long COVID, and, uh, we've recently seen, I believe, a growing recognition of the [00:32:00] condition, and I wonder if any lessons from long COVID might help us understand the challenges faced by people with MCS

[00:32:13] Geoffrey Bowker, PhD: Well, I'm not sure. I mean, I think my, my doctor friend who convinced me about long COVID, the way in which he convinced me was in terms of the biomarkers. There are clear biomarkers for it. As a sort of like, do you remember that thing, I forget what it's called now, the Cuban embassy thing, where the Americans in the embassy in Havana were, you know, all, all going through, you know, weird conditions.

Aaron Goodman:[00:32:40] Migraines and- Yeah ... dizziness, and it affected Canadians too. Yes, and maybe others, but yes, I do remember. 

Geoffrey Bowker, PhD: And that's something which I absolutely believe was true. But again, I mean, because there's no clear marker, because there's no outward and visible sign, I [00:33:00] mean, getting acceptance... All right, so let's get back to the fundamental question of what you're asking in this podcast.

[00:33:08] The fundamental question is: how do we get recognition for, for what's really part of our lives, it governs our lives? How do we get recognition? You need to both work for recognition within their system, and say your system is wrong. And I think it, it's working on both simultaneously, which I think I can show you cases historically where that's been a winning strategy, but it's, it's not obvious, and it's not easy

[00:33:43] So perhaps one case that we could look to for hope. You're probably not gonna like it, but where I'd go there is partly what I mentioned before, the

[00:33:55] PTSD stuff, that, um, PTSD started as being very specific and very [00:34:00] well-defined. It then went through mission creep. Well, autism is the same. Autism went through mission creep as well, and it became everybody, and then it's like, well, let's pull it down again. And I think The recognition of autism is much better than it was in the past, and the recognition of PTSD.

[00:34:24] But that was in both cases dealing with a very similar intellectual problem to MCS, where you've got something that can be either very broad. There is no magic bullet here. Um, but recognizing there's no magic bullet, and that we need to work simultaneous on many different fronts. We're talking about chronic disease, and at the same time, we're talking about chronic insufficiencies of the medical system.

[00:34:54] In a sense, what you're doing with the MCS community is you're bringing out the [00:35:00] chronic insufficiencies of the diagnostic system, the medical system. So yes, basically keep the balls in the air. Keep working on those fronts. 

Aaron Goodman: Sometimes I hear that Multiple Sclerosis was once viewed by doctors as perhaps a mental illness, and that has radically changed.

[00:35:20] Do I have that right? 

Geoffrey Bowker, PhD: Yes, you do. I think MCS is really Interesting

[00:35:33] You would know better than me. I mean, doesn't MS have reasonable biomarkers right now? I'm not sure. That is a key factor, isn't it? And unless there are biomarker tests for MCS, it's doomed to remain an orphaned condition, would you say? Yeah, but that's exactly what I've been saying, but I've also been giving the message of hope here that it's not a [00:36:00] case of just struggling on one front.

[00:36:02] It's not a case of we want the magical biomarker. It's arguably never gonna happen, although it may happen, but arguably it's never gonna happen. Um, so what we need, what the MCS community needs much more, is to really work on, um, the recognition. I mean, what I would do if I were in an MCS position, I would join forces with a whole other set of conditions, people responding to, you know, not the same, but comparable sets of conditions, and saying, "Look, this is not just one thing that the medical community is not recognizing.

[00:36:52] There are a whole bunch of things that they're not recognizing. Let's cluster together, let's form patient [00:37:00] groups, let's form policy groups where we say, 'Look, MCS is just one of a whole suite of things that our system is not recognizing.' " I mean, the biomarker's nice, but also let's work together with lots of other communities who are facing similar lacks of recognition, and that's absolutely strategically the best thing to do.

[00:37:27] There's work to be done, that's clear What you need to prove as far as the policy and the politics goes is there are a whole suite of things here. They're not the same. They're different, but they're all being unrecognized simultaneously for the same reason. Therefore, we need basic education changes, basic policy changes, basic diagnostic changes.

[00:37:56] So it's, it's finding your allies. 

Aaron Goodman: You know, on this podcast, we've [00:38:00] had conversations with researchers on a range of conditions such as ME/CFS and Lyme, and I'm trying to make those connections. But I also have a feeling that by bridging with others, our uniqueness gets lost a little bit. Sometimes International MCS Awareness Days combine with awareness about other conditions, and I often feel, "Hey, what about us?"

Geoffrey Bowker, PhD: 00:38:27] Yeah, and I have no good response to that, but I totally hear you. Conditions want to clamor for themselves and say, "Look at me, me, me." There's a sense in which you absolutely need to do that. 

Aaron Goodman: 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.

[00:38:49] The podcast is generously supported by the Marilyn Brachman Hoffman Foundation and listeners like you. If you wish to support the podcast, please visit [00:39:00] listen.chemicalsensitivitypodcast.org. 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, Instagram, BlueSky, X, and TikTok, and you can email me at aaron@chemicalsensitivitypodcast.org.

[00:39:24] Thank you for listening. 

The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman and made possible with funds from the Marilyn Brachman Hoffman Foundation, supporting efforts to educate and inform physicians, scientists, and the public about multiple chemical sensitivity.

[00:39:42] The content, opinions, findings, statements, and recommendations expressed in this Chemical Sensitivity Podcast and associated website do not necessarily reflect the views and opinions of its sponsors.