The Chemical Sensitivity Podcast

MCS and Chemical Intolerance — Measuring What Medicine Often Misses - Raymond Palmer, PhD

The Chemical Sensitivity Podcast Episode 105

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0:00 | 29:43

How can better measurement of MCS and chemical intolerance help reduce misunderstanding, missed cases, and misdiagnosis?

In this episode of The Chemical Sensitivity Podcast, Aaron Goodman speaks with Raymond F. Palmer, PhD, a biostatistician and research professor at the University of Texas Health Science Center at San Antonio who has studied chemical intolerance for more than a decade.

You'll hear:

  • Why better recognition may help address misunderstanding and misdiagnosis
  • How the QEESI can help identify and measure MCS and chemical intolerance
  • The TILT model and the potential role of environmental exposures
  • Research into genetics, mast-cell activation, and biomarkers
  • Why listening to patients and improving recognition matter

A conversation about how researchers are working to better measure and understand MCS and chemical intolerance — and why doing so could help change how people with the illness are recognized and treated.

Links:

The QEESI (Quick Environmental Exposure and Sensitivity Inventory)

Raymond Palmer, PhD

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[00:00:00] Welcome to the Chemical Sensitivity Podcast. I'm Aaron Goodman. My guest today is Raymond Palmer, a research professor in the Department of Family and Community Medicine at the University of Texas Health Science Center at San Antonio. Professor Palmer is a biostatistician who's been researching chemical intolerance for more than a decade.

In our conversation, we explore why MCS, or chemical intolerance, the term Professor Palmer prefers, continues to be missed and misunderstood, and how researchers are trying to better identify and measure the condition. Everybody's got a story. It's a very interesting story, and most of the time it's a struggle about getting help, being taken seriously, even for spouses not knowing what's going on.

We talk about the QEESI, the Quick Environmental Exposure and Sensitivity Inventory, a questionnaire that can help identify and measure chemical [00:01:00] intolerance and give people useful information to share with healthcare providers. We also discuss the TILT model, Toxicant-Induced Loss of Tolerance, and research into genetics, mast cell activation, and possible biomarkers.

We also discuss what the science can and cannot yet tell us about chemical intolerance, and we talk about something much more fundamental: why clinicians need to listen to their patients and take their experiences seriously Dr. Palmer also explains why he believes greater awareness, better research, and changes in public policy can make a difference for people living with MCS or chemical intolerance.

Please check out and share a link to the podcast's website. It's listen.chemicalsensitivitypodcast.org. It's an easy way to introduce friends, family members, healthcare providers, and others to [00:02:00] conversations about MCS. And please subscribe to the podcast wherever you get your podcasts. To learn more, follow The Chemical Sensitivity Podcast on YouTube, Facebook, X, Instagram, BlueSky, and TikTok, and you can reach me at aaron@chemicalsensitivitypodcast.org.

And here's my conversation with Professor Raymond Palmer. Thanks for listening. 

Dr. Palmer, thank you so much for joining me. Could you please introduce yourself and perhaps say a little bit about your research background and what motivates you to study MCS / chemical intolerance? 

Raymond Palmer, PhD: Well, I'm a research professor at the University of Texas Health Science Center, and I'm in the Department of Family and Community Medicine.

I have a probably a 30-year or so background in health promotion disease prevention research, which spans-- I like to look at it as expanding the developmental lifespan from neuro while you're wiring [00:03:00] up in the womb or you're affected by dementia in later years. So it's a developmental lifespan approach that my work has been primarily as a biostatistician, and I was interested in chemical intolerance because I was doing autism research, and then I met Dr. Claudia Miller, who's the, the premier person on chemical intolerance dating back a long time, and we'll talk about her theory of TILT, Toxicant-Induced Loss of Tolerance, later. I've worked with Claudia for over 10 years on this. We noticed, uh, similar patterns in women with chemical sensitivity happened to report children with autism more than parents without chemical intolerance.

So as a father of an autistic child, I became-- I was very interested. I was doing autism research, environmental influences on neurodevelopment, and it just nicely meshed with chemical intolerance. And so I continue to work on it, publish [00:04:00] papers, and I just love doing things that there's no known cure, no known cause, specifically for both autism or chemical intolerance.

So I find myself in, in, in quite a position trying to weed out this ball of string, as I call it.

Aaron Goodman: You've done an enormous amount of research, and I wanna hone in first of all on this issue of recognition. You mentioned there's no cure. The precise cause remains unknown, although there are many theories.

But what would earlier identification and perhaps self-recognition, self-understanding, and also on the medical side, a diagnosis do? What would that potentially change for people living with MCS chemical intolerance? 

Raymond Palmer, PhD: Right. In the, the old days when all these sort of things started to become more prevalent over time, specifically, you know, through the '70s to '80s, and primarily in women who have multi-system symptoms, [00:05:00] head, neurological, GI, and they would eventually, you know, go to their physician.

They couldn't find anything, you know, biologically wrong, physiologically wrong at that, at that point. And so it, you know, the, uh, multiple chemical sensitivity over time, a lot of physicians didn't take it serious. They just thought they were, you know, hysterical, anxious people who are overreacting. Well, over time, we know now that that's not the case.

It's sort of like when, when autism was blamed on a refrigerator mother theory. 

Aaron Goodman: I’m not familiar with that. Do you want to unpack that? 

Raymond Palmer, PhD:  Well, it's sort of distant, emotionally distant and not bonding with the child. So, you know, they were trying to figure this stuff out, and they'd just make things up. But you know, that's totally wrong.

There's a biological basis for chemical sensitivity. I call it chemical sensitivity to get away from the baggage that most people, or the residual of multiple chemical sensitivity, that word. And I'm not the only one, so there's people in Europe that took- that's calling it idiopathic [00:06:00] environmental illness.

Idiopathic means we don't know where this comes from. So that's a little more honest. I prefer the word chemical intolerance rather than sensitivity. Yes, there's sensitivity involved, but it's more like an intolerance to the everyday things you're exposed to. I guess we'll get to that, too. There's a, either a, a one-time hit of a big pesticide, and it makes you subsequently sensitive to other things that are structurally unrelated chemically.

This is the TILT model. The TILT model has an initiation and a triggering phase. If you're initiated by either a large dose of, say, just let's say pesticides, you've bombed your house, and now you're sensitive to this. You're in- you're intolerant to that particular chemical, and you start to have symptoms.

Down the road- Other things could trigger that. Just because of that one, it doesn't mean that you're gonna always react to pesticides, but you're gonna react to, say, the smell of gasoline, the smell of fragrances in perfume. These are real things. Everybody's [00:07:00] different. So because, say, if two people are exposed to pesticides, and one later becomes intolerant to gasoline, and another person doesn't, but they're intolerance to another smell, like your household, you know, bleach or something like that.

Mm-hmm. Now, this could either be a, a one-time exposure, or what if you worked in a place where you just have small doses over time? That could also initiate, initiate over time, and then you TILT. It's called TILT, toxicant-induced loss of tolerance, and that's Dr. Claudia Miller's, Miller's term. In the day, as, as a physician, when she saw patients, she's retired now, she took them seriously, and really took notes, and developed this thing called the QEESI.

It's the quick environmental exposure sensitivity instrument. There's a series of 10 chemicals that, you know, tar, cigarette smoke, gasoline, pesticides, and you, you rank, you rank how much those bother you. This was [00:08:00] the first time that anybody has really taken this seriously to really find out what are the symptoms a person's having, what kind of chemicals make them sick, and what is their reactions.

So you fill this out. It's rather sophisticated. It's very nice, and you bring it to your doctor. Bring it to your healthcare, because most times they don't know what it is. It takes, you know, uh, 20, 30 minutes to, to fill out your, your survey. They don't have that kind of time, so you come prepared.

Aaron Goodman: Do you think doctors are receptive to people bringing in the completed QEESI and essentially informing them?

Raymond Palmer, PhD:  We've had success on that. Some of the patients that Claudia Miller has, uh, seen, actually, we encourage people to take their, the survey. I'll link to it in the show notes. There's an online version, and then there's a printed version you can bring out. So that, that's very helpful to bring to a physician. I think more and more physicians are open to this idea now.

I think that idea of multiple chemical sensitivity as a neurotic, [00:09:00] hysterical person, and just because, you know, they can't really find any, uh... Back then, there was really no biological correlates. Mm-hmm. Now, which we have found some biological correlates, correlates, including, including genes, and including immune system responses.

Okay. So these are real things.  

Aaron Goodman: Let me then perhaps ask you about both of these. The genetic part, it's really complicated as someone looking at this research, and there isn't a ton of research on genetics and MCS. Um, but do you want to perhaps enlighten me how much of a factor is genetics in MCS? 

Raymond Palmer, PhD: It differs for everybody. And there's genes that metabolize what chemicals. There's a handful of specific genes that, that will meta- metabolize pesticides, for example. So you could be exposed to pesticides and have just a [00:10:00] wonderful gene that metabolizes that stuff. Okay, let's get this out of our body. Others whose gene, they're called the SHIPS CYP P450s. There's like six or seven of them, and so we know those for sure.

They're different names, P4... C- CYP P450s. Some metabolize pesticides, some metabolize metals. So you could see how now this gets complicated if we're all different, if those six genes are different in everybody, and we have different combinations in ourselves, and we're different, and we're also exposed differently.

So there's never a one-to-one correspondence. So somebody with a faulty gene that can't metabolize pesticides, if they never come into contact with pesticides because they're holistic, they're gonna be okay. But, you know, if you are exposed and you do have a gene that's functioning really well, then that's how genes can handle that.

There's only six important genes that we've known about, and there's maybe a few more. I did a [00:11:00] study where we did what's called an untargetted genome. I don't know if you saw that paper, but basically you go in and ask the technology to go in and find these genes that are different between this group and that group, so those with chemical intolerance with those without.

And we found a bunch of them, but you know what? We don't know what they do. So I think when we cracked the DNA code a long time ago, like, "Whoopee, we're gonna solve all the diseases," no, it opened up Pandora's box, 'cause a lot of those genes, we just don't know what their functions are. Some of them function to, you know, metabolize plastics.

This is a very big thing. Some of them metabolize, like I said, pesticides or, you know, different toxic materials in the environment that we come in contact with every day. And we have a soup of environmental chemicals and, well, let's call it genes in noodles, and so we throw them in a big pot with the soup, and okay, everybody's different.

Yeah. Why is this s- noodle [00:12:00] strand, uh, you know, affected and, and this other one isn't? That's, that's why I call it a ball of string. Mm-hmm. There's never gonna be one environmental thing. There's never gonna be one gene. It's always gonna be a gene environment interaction, and that's where I come from all the time.

Aaron Goodman: I was thinking perhaps people with MCS do get genetic testing, and the question becomes, what do I do with that? And for researchers, genetic experts, could they one day develop an intervention, a cure, you know, to repair the faulty genes? 

Raymond Palmer, PhD: Well, I guess maybe we're on the precipice of that sort of day, but right now the main treatment is avoidance.

So if you know you have some faulty genes that are on your, your cytochrome P450s, which one of those metabolize certain environmental toxins, then you, you need to avoid those. It almost sounds silly, like to go to the doctor, and it's like, "Doctor, it hurts when I do this." "Well, don't do that." You know, I guess kind of where we're at.

Yeah. But that kind of goes back to an earlier point we were talking about, doesn't it, about the, the [00:13:00] validation and the diagnosis. Having the diagnosis on paper from a physician does a lot. Mm-hmm. Mm-hmm. It's really valuable, and without it, we really run into a lot of hurdles. Yep. It, it, it, you, yeah, you can't work with, with somebody who's, uh, who's just not up on it.

Aaron Goodman: Okay. Here's a question for you. What patterns should clinicians listen for when people report reactions to fragrance in cleaning products, mold, pesticides, medications, combustion products, or indoor air? What should physicians, clinicians be looking out for? 

Raymond Palmer, PhD: Well, this is what Claudia Miller would recommend. I mean, she's a big advocate. Physicians, listen to your patient. They'll tell you what's wrong with you. Physicians need to listen. They know a lot, but if they don't know about this, listen to your patient. 

Aaron Goodman: I've got to ask you, as someone who's been deeply involved in research on this illness, where do you think the research will go from here?What do you [00:14:00] think are the important questions for you and other scholars going forward? 

Raymond Palmer, PhD: Oh, my goodness. I always bring everything back to policy. It's sort of like, I mean, li- the analogy of smoking. You could smoke on a plane. You could smoke in restaurants. Well, that was outdated because smoking bothers people.

Well, the same thing, let's say, with these air freshener plug-ins. Those are crazy chemicals that people c- they're in the doctor's office. I mean, we just assume that everybody can, you know, handle this stuff. Um, you're in a, you're in a restaurant, and they, they're cleaning the floor with bleach. Do that at night when people aren't there.

So these, these policy things. A person has to a- avoid their triggers, but as humans, we, we deserve fresh air, fresh food, and fresh water, and that's policy. And so a chemically intolerant person deserves, especially in public spaces, a, a clean space. [00:15:00] How much do you think this is on the radar of policymakers?

Uh, not, it's n- We, we try. I often wonder how much policy makers read the literature or will write papers on this, and they go into the journal, and maybe other researchers will look at it, but that's about as far as it goes. Mm-hmm. So I think we need these advocates to bring it to policy makers' attention.

And I think there's a few advocacy groups out there, Facebook groups. There are many. Going back to initiation of the illness, you mentioned pesticide. Are there any other triggers that are very common? Household cleaning products, personal care products. That's why there's people are switching to unscented things, the more holistic deodorants.

You want to have a nice-smelling house. Uh Some of these other cleaning products, I'm not supposed to say the exact names, but, you know- They're major triggers for me and for many [00:16:00] people. Oh, yes. For millions of people. And they're not just in your home, and like if you go to a restaurant, there could be, you know, those things in the restroom that make the restroom smell good.

There's, in the urinals. It's everywhere. So we live in a chemical soup, and what one person reacts to, the other's not gonna react to, and we just don't know why. 

Aaron Goodman: In terms of the why, the biological mechanisms, you write about the theory of mast cell activation as one possible mechanism for MCS and chemical intolerance. 

Raymond Palmer, PhD: We began working with Dr. Larry Afron, who has a mast cell syndrome clinic out on the East Coast. And since chemical intolerance has a large immunological component, there's, you know, your immune system is overreacting. So what is that? So we went to Dr. Afron and asked if his patients would fill out the QEESI, and he did.

We have over, close to 1,000 [00:17:00] of these that we've published on this. And so over 50% of the people with chemical intolerance have mast cell, uh, disease. And mast cell disease is the, like, sort of the first responders of your immune system. Your immune system send out the soldiers, something's wrong. You know, I smell that thing.

Oh, you know, think of an allergy or, you know, sneezing. Those are mast cells going to the site of inflammation or an injury. So it's a very adaptive thing, but what Dr. Miller would call it is, and Dr. Afron, is overreactive mast cells. Dr. Afron might call it misbehaving. It's like, "Okay, enough, soldiers. You can stop," you know?

It's just like no quarter. Uh, stop now. Yeah, the, the, the danger is over. The exposure is gone. Well, your body doesn't think so. That's, so that's another, an individual that a person might have, is to sort of be sensitive to immunological reactions. 

Aaron Goodman: Not everyone, clearly, who has [00:18:00] MCS has mast cell activation.

Raymond Palmer, PhD: That's right. But if one does, then there are some practical things that can potentially help, correct? Yes, and some of those things are, as I understand, and I'm not a physician, H1 blockers, H2 blockers, hi- histamine blockers. You mentioned that your, um, son has autism- Mm-hmm ... and that was part of your motivation for looking at the connections between, or doing autism research, and also research into MCS.

Aaron Goodman: What should listeners know and understand about the associations between these illnesses, and should we be careful about not overstating causality? 

Raymond Palmer, PhD:  That's the number one thing in there. We don't have the studies to explicitly say the causation. You need longitudinal studies.

They're almost impossible to do, but we have correlational studies. Why is it that in over three studies we have found that women who score [00:19:00] high on the QEESI or are chemical intolerant, they report having more children with either autism or ADHD? Why is that? There could be something in the mother that was, she was exposed, and her genetic makeup was that she cannot do it, so the child has it as well.

And while you're wiring up in utero, there could be just some, some damage done to the neurons, you know, wiring in the brain. So that, that's, that's one theory. We're embarked on another study in looking at the relationship between B12 deficiency, autism, ADHD, and chemical intolerance. Well, lo and behold, they, they all share this problem of being B12 deficient.

Well, when I looked at the data, and I don't know if you're familiar with re- regression or let's just say correlate, there's a correlation between the mothers with chemical intolerance and the outcome. What causes that? So in, we do a thing in statistics [00:20:00] called a mediation model. There's a, must be a third variable, and we think the two variables are correlated due to a third variable when we did a big survey and assessed B12.

And so make a long story short, the B12 explains the relationship between mothers with a chemical intolerance and their children with autism. So th- there's a statistical way to say that. They think two things are correlated highly, say, um, 0.5, and then you adjust for B12 deficiency, well, that main association decreases, and the other indirect path is what we'll call it, increases.

So I don't know if that makes sense to non-statisticians or the layperson, but it's basically what we're thinking that it's a very, gonna be very important. Mothers of childbearing age should have their B12 checked. [00:21:00] Well, I'd like to ask you two more brief questions, if possible. Yeah. The first is, do you think we need to, as a community of people with MCS and researchers and policymakers and others, agree on a term for this illness?

Because there are many. That's been the bane. There's other researchers that wanna, wanna call it their own thing. There's no real standardized protocol for assessing chemical intolerance, and there's no standardized name. So my group has, you know, bucked against MCS because of the baggage, and we've started calling it chemical intolerance.

The mechanism is TILT. And tilt is a, sort of a, a chemical intolerance. So the tilt is when you're tilted, you think of a see- a saw. So there's an initiating event, and then there's triggers. So when those triggers, the initiating event, um, you know, gets too much on one side, it's gonna tilt to mast cells to have your body immunologically respond.

Aaron Goodman: Let’s go [00:22:00] back to the, I think the dominant question of this conversation, and you've talked about it, but just to hone in on it a little bit more. What do you say to clinicians or researchers who still perhaps view MCS chemical intolerance as too subjective, too complex, not measurable enough to study seriously?

Raymond Palmer, PhD: Well, I tell them we have the tools to, to measure it seriously. 

Aaron Goodman: The QEESI is a wonderful place to start. But the QEESI relies on the patient's or the person with the illness's own perspective, right? Yeah. And there's still, let's, you know, I think there's still reticence on the part of clinicians, right?

There's still a status imbalance. Let me say, I would feel self-conscious bringing the QEESI to a doctor because of the status imbalance. So in light of that, do you think biomarkers would help, and [00:23:00] are they coming anytime soon? 

Raymond Palmer, PhD: Well, we have had, had an opportunity to study that, but it, it didn't get funded yet.

But I'm involved with a, with a large study on aging that collects all kinds of biomarkers and all kinds of MCI, MRIs, PET scans. So yeah, the specific biology still needs to be discovered. But then I also say that we discovered the exact mechanism. It's almost like the booby prize. What do we do now?

The policy still has to change, and there's no medicine to really cure it. Does it help if we know the exact complex pathways that, that affect our biology? Other than avoidance- But there are still many clinicians who unfortunately dismiss us, you know, prescribe anti-anxiety medication and say it's all in our heads.

Aaron Goodman: That’s why I bring up biomarkers, because for scientists, for physicians. Would that [00:24:00] make a difference? 

Raymond Palmer, PhD: I think so. They pay attention to biomarkers. But there really is no biomarker.

I think science can get too precise. Like Claudia would say, I mean, listen to your patient. You know, whether you know what exactly is wrong biologically or physiologically, listen to your patient no matter what the disease. Not all the physicians are, are adept at listening to their patients. They're just looking at the computer and taking notes.

"All right. How is your medicine?" I've been sort of hammering away at this piece, the status imbalance, and the fact that we want them to listen and validate us, but often it doesn't come. Well, you know, other, other kinds of healthcare workers I have found are also more open to this, like, uh, uh, ODs, DO, doctor of osteopathic medicine.

They're more naturalistic. I would suggest that you go to naturopaths or [00:25:00] those, doctors of ortho. Or perhaps ideally physicians who are trained in environmental medicine. 

Aaron Goodman: Absolutely. But, but they're very hard to find. There are long wait times, and it's costly. So for folks who cannot get to see a environmental physician, any suggestions? 

Raymond Palmer, PhD: For folks who cannot, I mean, you know, you're probably already doing it online, support groups, looking at the scientific literature if people are so inclined. Basically, it looks like any other disease that you get. You dig into the literature, you read books, you listen to other people, you join podcasts or listen to podcasts, join help- We're a very informed community, right?

Aaron Goodman: Yes. People with MCS, we're very proactive in that sense. We're waiting for medicine and science to catch up. Perhaps lastly, how much empathy have you developed over the years by studying this illness and speaking with people with the condition? 

Raymond Palmer, PhD: Yeah. 10 years ago, I didn't know much [00:26:00] about this at all, maybe even longer than that.

And through my connections with Dr. Miller and her interactions with patients, and just hearing these stories. We had our website and invited people to, uh, share their stories. My team and I, we would read those and may- maybe reach out to some who we really asked, Dr. Miller would. Everybody's got a story, a very interesting story, and most of the time it's, uh, it's a struggle about getting help.

That's right. That's what the story relates to, being taken seriously. Even for spouses, not knowing what's going on. It's a very difficult thing to move around with. Can you perhaps leave us with a note of optimism? Yeah. Well, I think the more people are aware of it, just like any other disease, like autism, 15, 20 years ago people did not really know what that was, you have to explain it.

Now everybody knows somebody with autism or ADHD, and I think the same [00:27:00] is happening here for chemical intolerance. Um, getting the, getting the word out. It can't help but to be known because so many people are having it, and it's a worldwide problem. There's a lot of people doing it, research in Japan and all over, and I think that- that's probably the biggest optimistic thing is that it's becoming more widely recognized.

Older physicians, sorry, they're going away. The newer ones are getting it. We've trained seven physicians in our department, and they know now to take their patients seriously and what to do. So that sort of thing. It's a slow march, but like any other disease, if it's more widely known, then healthcare community is also informed of this sort of thing.

So hopefully we get some, some good studies. Hopefully there's- I don't wanna say drugs, but maybe there will be.

Aaron Goodman: Is this a condition, a set of conditions, [00:28:00] an illness, a disease? 

Raymond Palmer, PhD: I think all of that. I think you would say all of it. I don't know if you could put it into one, one box, but it's certainly a set of conditions.

I think it is a disease, literally dis-ease, if you wanna call it broadly. But more refinedly, it's a set of different systemic symptoms in different people, and it's real

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. The podcast is generously supported by the Marilyn Brachman Hoffman Foundation and listeners like you. If you wish to support the podcast, please visit listen.chemicalsensitivitypodcast.org.

Your support will help us continue making the podcast available and creating greater awareness about MCS. To learn more about the [00:29:00] Chemical Sensitivity Podcast, follow the podcast on YouTube, Facebook, Instagram, BlueSky, X, and TikTok. And as always, you can reach me at aaron@chemicalsensitivitypodcast.org. Thanks for listening. 

The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman, made possible with funds from the Marilyn Brach Hoffman Foundation, supporting efforts to educate and inform physicians, scientists, and the public about multiple chemical sensitivity. The content, opinions, finding, statements, and recommendations expressed in this Chemical Sensitivity Podcast and associated website do not necessarily reflect the views and opinions of its sponsors.