[00:00:00] AARON GOODMAN:
You're listening to the Chemical Sensitivity Podcast. I'm Aaron Goodman. I wanna take a moment and talk about an interesting development that could have impacts for people with Multiple Chemical Sensitivity (MCS) in the United States and beyond. It has to do with a policy issued by the American Medical Association, or AMA.

So, for context, the AMA is the largest and most influential medical organization in the U.S. It guides how healthcare institutions set standards, how doctors are trained, and even influences government regulation. In June, the AMA adopted a policy called “Fragrance Regulation H dash 1 35 0.902.” The policy was developed and recommended by the AMA's Council on Science and Public Health.

Now, this body studies health evidence and makes recommendations for AMA policy, and it was approved by the AMA's House of Delegates. Now, here's the key part: the policy states that some environmental exposures, including fragrances, may have the potential to substantially limit major life activities for people with fragrance sensitivity.

That language mirrors legal definitions of disability, and it signals that the AMA recognizes fragrance exposure can be disabling in certain cases. Importantly, it doesn't say all fragrance sensitivity is automatically a disability, and it's cautious in its language, and that leaves room for interpretation.

However, the policy also encourages fragrance-free policies in hospitals, clinics, and public spaces, and calls for better labeling, research, and regulatory action when it comes to fragrance products. So what could this mean in practice? If it's implemented and taken seriously, potentially, could it lead to easier and more accurate diagnosis?

Could clinicians take MCS seriously rather than dismissing our symptoms? Could it lead to safer, more accessible healthcare? Fragrance-free policies—could these make it possible for us to enter clinics without risking reactions? Could it lead to less dismissal and misdiagnosis? Could it lead to recognition from respected medical authorities, and that could validate patients' experiences?

Could there be potential ripple effects? If medical institutions act on this guidance, could other organizations like schools, workplaces, and public institutions follow suit, and could it even influence thinking internationally? These are the questions that I have, and I have reached out to the AMA to request an interview, and I'll keep all of you posted on whether I succeed in getting an interview.

Now, it's important to be realistic. The written policy from AMA doesn't guarantee change. Adoption, enforcement, clinician training, and cultural shifts—these all take time. But the AMA policy is symbolic and aspirational in parts, and legal recognition and disability still depends on the interpretation by courts and regulatory bodies.

But even so, this policy does mark a significant acknowledgement: fragrance sensitivity can be disabling. And as we know, systemic change is needed to make healthcare more accessible. Again, I've reached out to the AMA to request an interview with someone on the Council on Science and Public Health who worked on this policy.

My hope is that they'll respond, and we'll be able to explore this policy in greater depth and share this information with all of you and invite your further dialogue. You're listening to the Chemical Sensitivity Podcast. I'm Aaron Goodman. I'm a journalist, documentary maker, and researcher. But I'm also someone who's lived with Multiple Chemical Sensitivity, or MCS, for years.

MCS affects millions around the world. It's a condition that makes everyday life extremely challenging and unpredictable. 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.

And yet, for all its impacts, MCS remains largely invisible. Most doctors 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 Rebecca Bevins. Rebecca is a researcher and professor of psychology at the University of Nevada in the U.S. When her son's behavior changed and he became agitated and distressed, Rebecca began to investigate what was behind it. What she found was her son was having reactions to synthetic food dyes, and since then, Rebecca has been speaking publicly and writing about her family's struggles and her insights.

I'm not a medical researcher or expert, so I can't say with certainty that people with MCS who react to food dyes are having chemical or MCS reactions. I reached out to some listeners, and many said definitively they do have MCS reactions to food dyes, and some said the reactions are different. But without a doubt there are parallels, and you'll hear Rebecca explore how the types of reactions her son and others have to food dyes—including cognitive disruption, mood changes, anxiety, and more—are familiar for people with MCS.

How food dyes, like synthetic fragrances, are petroleum-based; how people who are parents and all of us can find out whether people in our lives, or ourselves, are reacting to food dyes or other chemicals; and, if so, what to do. Professor B., thank you so much for joining me on the podcast.

[00:06:27] REBECCA B.:
Oh, thank you for having me. I'm, I'm excited to be here.

[00:06:30] AARON GOODMAN:
I am really excited to speak with you too. Thank you for making time. Before we jump in, would you like to talk about your motivation for beginning this research?

[00:06:40] REBECCA B.:
I have a doctorate in cognitive neuroscience, a master's in child development, and ended up with a kiddo who was suicidal at seven and.

Using my background in research and understanding the brain—cognitive neuroscience isn't just the brain, it's the hormones, it's, you know, our neurotransmitters, it's a lot of it and how it changes our perception. So having that background, it was like this perfect storm when we had a kiddo who was just struggling so badly to kind of start digging into what was causing.

The struggle, and it would never have occurred to me ever in a million years that it was a chemical in his food, a petroleum-based chemical that the FDA says is safe. And for some it may be, but. For a lot of people it causes reactions mild to severe. Our son is severely reactive. We've talked to doctors and researchers and, and they all agreed that he's really on that severe end, which gave us the opportunity to see it and, and so that, that's really what's been driving.

I've spent 12 years advocating because I never wanted. One more kiddo to go through what we went through. One more parent to go through what we went through. A couple years ago. I figured out that I was reacting on a milder level, but it was still a reaction that when I removed it, I had a little mini existential crisis.

Oh my gosh, who am I? Because I feel different. Mm-hmm. And so. That really is what has been driving me all these years is just to get the word out and educate people because it's, mm-hmm, it's a serious issue.

[00:08:13] AARON GOODMAN:
Do you want to take us back briefly to that moment when your son was in crisis and what kind of symptoms was your son having at that time that led you to start to investigate?

[00:08:24] REBECCA B.:
Uh, so initially. We just assumed he was a really hyperactive kiddo, and I was a hyperactive kiddo. And so we thought, there we go. And then it got to where it was a little more than just that, and he was exhibiting a lot of ADHD-type behaviors, but they weren't consistent. Okay, so ADHD is daily, right? It's 24/7, but this was not 24/7. And so it was all right, what was going on with him.

And I started to dig into the research when he told me that he couldn't concentrate to do his homework, 'cause his brain bust. And it's like, I know that brains aren't supposed to buzz and. So I, I started to dig, and there's no, there's not a lot of research with humans and food dyes. There's some Red 40, there's one with Yellow 5 or Yellow 6, and then there's not a lot.

But I found a blog, and I wish that I could find this woman. She's a woman now. She was 16 at the time. Mm-hmm. Because she said when she ate Red 40 her brain buzzed, and that, that was this connection to me like, all right, fine.

So we pulled Red 40. A lot of the ADHD behaviors disappeared, but the rest of them did not. We kept going with the other food dyes are fine, and then they weren't, but we didn't know. And so we saw an increase in these behaviors of aggression and high anxiety and racing thoughts and intrusive thoughts.

And then the intrusive thoughts got to be where he was just, he'd have a meltdown a month, a meltdown a week, meltdown a day. To a day, five a day. He was having meltdowns just like throughout the day. I mean it, it was bad. And that's when he begged me to get him. I have told this story so many times. Yeah.

But it still gets me every single time, of course. So he just begged me to get him a knife so he can kill. And no parent wants to be looking at their child who is seven, who wants to die. And it's not that he wanted to die, it's that he just didn't wanna feel like that anymore. He was so overstimulated all the time and overwhelmed.

We later found out that yellow stays in his system up to five days, and the research demonstrates that it's detectable in urine for up to five days. It was just a constant for him. It was, it was an absolute constant. And so he just couldn't, he just couldn't anymore. And I got that and, and so we just started to dig a little bit further, and then I found a yellow article that linked it to more aggression.

And I was like, you know what? Forget it. Let's just pull all food dyes. And so we did. And within five days the suicide ideation disappeared. The behaviors disappeared. He crashed within two days. Yeah.

[00:11:07] AARON GOODMAN:
And that's what I wanted to ask you about—was that perhaps we could talk about it as a withdrawal.

[00:11:13] REBECCA B.:
Yeah.

[00:11:13] AARON GOODMAN:
And even in your own lived experience, you talk about it as like a withdrawal coming off of that. Mm-hmm. What does that say to you?

[00:11:20] REBECCA B.:
What I noticed with him. So yeah, it was a withdrawal. It was like a drug addict coming off of drugs. Mm-hmm. He crashed and he was sleeping. He was tired. He'd get up in the morning and he'd go like back down on the couch, and physically to touch him it hurt him for about three days. He was very tender, very sore, and so mm-hmm.

He, he just laid there and watched TV. He couldn't even play video games, so, you know, it's bad when they can't play video games. And so he started to come out of it on day three, day four. Yeah. But he was craving milk and cheese, which is very interesting. Mm-hmm. And I've talked to a couple other parents and they did the same. Their kiddo wanted yogurt and cheese.

Could be the fats, could be the proteins, could be the combination of. It could be going back to what we originally started drinking in the very beginning of our lives. It was a kind of interesting correlation. Yeah. And then he just started to feel a little bit better, but his stamina was down. And that's the interesting thing too. Mm-hmm.

Is that it took months for his stamina to build back up. He'd go out and play with his friends and 15 minutes later he's exhausted. Mm-hmm. So he didn't have that energy, and, and in talking to him—he's 20 now. And so over the years we've talked—and he said that when he eats yellow food dye, and to this day he still reacts. Mm-hmm. And even though he is like almost six three and you know, 250, he's this big guy and mm-hmm.

He still reacts. And he said that the yellow food dye pauses the racing thoughts. He says he feels hot even though his temperature hasn't changed. Mm-hmm. And his body, his metabolism—he used to be really skinny. And he could see his ribs through his shirt, and then he gained six pounds in six weeks after he quit the food dye.

So it did have a metabolic effect on him. With working with Dr. Lauren Hof on the book and his—and mm-hmm. Lauren, his area is pharmaceuticals. His area is research. His area is different from mine, but he said, yes, we've seen, and the research has shown, that there are metabolic issues that it can cause. So that was an interesting kind of support for that.

It took a while. The thing that took the longest was the emotional development to catch up. Mm-hmm. Because he was stunted. I mean, it's like if you're high, you don't. Mm-hmm. You don't grow emotionally, and so that took a little while for him to catch up as well. But there was physical reactions. The physical and the psychological both really hit him hard on that, I assume.

Probably—cautiously—that if he's sensitive to one thing, he's gonna be sensitive to others. We've tested some, and some are—he's a little sensitive to TBHQ, which is also a petroleum-based chemical. Mm-hmm. A couple other petroleum-based chemicals he doesn't seem to be. So it's definitely—so he's not—

[00:14:06] AARON GOODMAN:
—universally chemically sensitive, but food dye. But there are so many questions that I want to ask you coming out of what you've shared. And if we go back to the TED Talk you did, which is about nine-ish years ago, I believe—

[00:14:44] REBECCA B.:
Oh yeah.

[00:14:44] AARON GOODMAN:
—and there are almost half a million views. Why do you think so many people are interested in this topic? Is it because your story is very compelling, your son's experience is very compelling? Is it that there's little information and you yourself have become an expert? Why are so many people interested in this issue?

[00:16:31] REBECCA B.:
I think it's a combination of all of that. The reason that I was asked to do the TED Talk is because I am in a unique position. I'm not just some crazy mom. I did some research with my kiddo. I did some double-blind research with my kiddo. Having been in research for so long, I had the background, and then I had the PhD and the degrees to support it.

So that was helpful. It is a compelling story. I—it is pretty intense. And I think that it, it resonates for some. I have talked to tens of thousands of people over the last 12 years, and I hear people say, “Oh my gosh, my son is similar,” or “My daughter did the same thing.” Or, I had a student in class—we talk about it in class.

He's a great example of an n-of-one study. Right. You know, a case study. And so we talk about it in class, and he was talking in the beginning of the semester about how he has this rage inside of him and, and, and he wanted to talk to a therapist. I gave him some information. Yeah. But then we talked about food dyes.

He cut food dyes out. He came back to me three weeks later and was like, “The rage is gone.” Yeah. And so I think that it really does resonate with a lot of people: maybe our issues are related to this. Yeah. Because he exhibited ADHD behaviors. He exhibited depressive and anxiety behaviors, aggressive behaviors.

Oppositional Defiant Disorder, Conduct Disorder, Intermittent Explosive Disorder—like all of these things he could have been labeled with. And I think that really touches people. It doesn't affect everyone. I get that. But the people that are experiencing issues should check your food. Mm-hmm. And I think that's where a lot of people kind of go, “Oh.”

And I think that the awareness is there now because it's being talked about from the government down. It's being talked about more and people want to know a little bit more. And so when you kind of Google “food dyes”—

[00:17:35] AARON GOODMAN:
—your name comes up.

[00:17:35] REBECCA B.:
—might come up.

[00:17:35] AARON GOODMAN:
It certainly does. And one of the really interesting things is that I think—certainly for me and for, I think, a lot of you who are listening—the symptoms, there's a lot of crossover in the symptoms, right?

Mm-hmm. And a lot of people with Multiple Chemical Sensitivity have the same experience of being misdiagnosed. And we're going to have another episode on misdiagnosis and medical dismissal. But of course, we can have anxiety, we can present to a physician or a healthcare worker with anxiety. Or even mania or rage, as you talked about, or depression. But it might be—and oftentimes it could be—the prescription medication that has maybe a synthetic dye or a chemical component, or the air fresheners that are being used in a certain space, or the laundry products that people were exposed to.

So do you—now that you've mentioned there's increasing awareness about synthetic food dyes—what do you think, Rebecca, about the level of awareness when it comes to other kinds of chemicals, and why don't we talk about fragrance, 'cause fragrance is a big one for us?

[00:18:16] REBECCA B.:
Mm-hmm. Uh, I'm in a Facebook group—I'm a moderator for a group that has, like, well, nearly a million people in it. And yes, we focus on food dyes. However, the conversations will pop up of other things. There are a lot of people that are aware of other chemicals. There are food dyes in perfumes and lotions and candles and all over the place. And so that conversation has kind of spread.

But yeah, I think there's becoming a more—a larger awareness of what are we consuming? What are we putting in our households? What are we using? We switched over to all-natural cleaners in our house. Mm-hmm. I use a natural laundry detergent—

[00:19:11] AARON GOODMAN:
—good, really important—laundry products.

[00:19:11] REBECCA B.:
—your skin can absorb chemicals as well. There's, mm-hmm, some studies demonstrating that sunblock enters in. The active ingredients in sunblock will show up in your bloodstream within 24 hours after application, so lotions end up in your system.

Soaps can end up in your system. You know, nail polishes, makeup—all of these things can be abor—absorbed by your skin. And we know that there's bacteria on our skin, and bacteria can break down certain chemicals, and they can enter. So, like, azo dye—red and yellows—are broken down by skin bacteria, not just gut bacteria.

So it's important—it's called dermal absorption. Otherwise patches of medication wouldn't work. Right. So we know that you can put a patch of medication on and it will slowly absorb into your system. That includes anything else you put on your system. Yep. Anything you put in your mouth—your toothpaste, your mouthwash—that can get absorbed underneath your tongue and into your system.

[00:19:25] AARON GOODMAN:
Of course.

[00:19:26] REBECCA B.:
So we have to be aware of what—what's in and around our body. Breathing—that's why I got rid of all the chemicals. That's—my son would be breathing, because I don't know what's gonna be affecting him or not—

[00:19:25] AARON GOODMAN:
—affecting—

[00:19:26] REBECCA B.:
—him.

[00:19:56] AARON GOODMAN:
And to your point, how do we determine what is it? Is it a food dye or an aerosol or the laundry product? I just wanna share that I feel really—it's very moving to hear you with the level of awareness that you brought to your son, because in my case my parents missed it. You know, if they'd been paying attention—it was more subtle, perhaps, than your son, but there were definite signs that they missed. But what can we do to kind of figure it out? What is the cause?

[00:21:27] REBECCA B.:
So first is you wanna observe, right? You wanna watch the kiddo. And if you notice a certain problematic behavior or a rash or a breathing difficulty—whatever it is—you want to kind of write down date, time, what's happening. What did they eat in the last 24 hours? What did they do in the last 24 hours?

'Cause I—there are times where our son would be reacting after we removed it and it's, wow, we're arguing over nothing. He gets like this. He gets really combative when he's eating yellow food dye. Let me look back over the last 24 hours. And then I look back and, oh, there it is. And then the next time you observe it, you write it down again and what happened in the last 24 hours.

And you do that. And after a while you'll be surprised. You'll notice a pattern. You'll start to see, ah, every time he went to Grandma's, every time he went to the neighbor next door, every time he, you know, washed his hands with this—whatever—you'll, you'll start to kind of see a pattern and you might be able to determine it.

The other way is to kind of eliminate everything from your house and your diet. So, like for food dyes, I'll tell people: go through your house, mark every food with an X with a Sharpie. Don't touch it for two weeks. Eat everything that doesn't have food dyes in it. Get rid of the toothpaste and put the toothpaste—everything—aside that has color in it, and watch. See how things change.

[00:21:42] AARON GOODMAN:
What would you say to folks who are—there's a fellow who posts on Facebook; he needs an antidepress— but he cannot tolerate the dyes in this particular one, and he can't find a pure one, and I—my heart goes out to him. What do you say to folks who are in that predicament?

[00:22:28] REBECCA B.:
Go to a compound pharmacy. I hate to say it. I know it's expensive. I have a medication that I ha—ha, I have to have compounded. Because once I, I removed food dyes from my system. I didn't even need the medication anymore. And it's very possible that the dyes were driving it. So, go to a compound pharmacy. They are expensive, but they can put it together without any colors in it.

If he has to have a very specific antidepressant, then yes. There are other options that you can start to play around with. I play this game every single time my son needs an antibiotic. Mm-hmm. It's five hours on the phone with doctors and pharmacies and, oh, they don't have that antibiotic. I call around all over the place trying to find one.

I am really good at looking up now medications and finding—mm-hmm—a manufacturer that makes them dye-free.

[00:23:03] AARON GOODMAN:
There's the labor piece that we often have to do, and on busy schedules and busy lives, it becomes very difficult. Mm-hmm. I want to turn a page in a moment to ask you a little bit more about what is in these dyes and how they affect the body beyond chemical reactions. But first, um, you mentioned the medical misdiagnosis piece.

I wanted to talk with you about that because a lot of people face that with MCS, and we know it could be the aerosols, the laundry products—all those chemicals could be causing it. But we're often told we may have Anxiety Disorder, Depression—

[00:23:44] REBECCA B.:
Yeah. I have a, a neurological pain disorder and they couldn't figure it out. Mm-hmm. And it was the process of elimination, and it took me finding an endocrinologist who was willing to think more outside the box. So when you are putting something on your skin and it's getting into your bloodstream, what is it doing in your system?

The way to test for any of these is complete process of elimination and then reintroduction. And it, it's so hard because we have so many chemicals in our system here. So you, you know, are you ready to isolate yourself for a couple weeks and kind of test it out? Yeah. For you to start to see a difference. But your body does flush things out relatively quickly.

You can eliminate and then reintroduce.

[00:24:12] AARON GOODMAN:
Sometimes we don't know. Yeah. With MCS, we're probably not consuming food dyes in our food. We're pretty well-versed in that. We stay away from those because we know we're go—those are gonna be a problem for us. Mm-hmm. But you did mention that they're petroleum-based, and that's the interesting crossover.

Mm-hmm. That a lot of the chemicals in household and personal care products are petroleum-based. So you're telling me that food dyes are also petroleum-based?

[00:24:31] REBECCA B.:
Yeah. They're made—based, originally made from coal tar, and now they're made from petroleum. So you've gotta look at your toothpaste and see what's in your toothpaste, unless you're brushing with straight baking soda, which.

You might choose to do for a little bit, but trying that for a couple weeks to get away from some of the chemicals that might be in the toothpaste.

[00:25:01] AARON GOODMAN:
You mentioned toothpaste. When we go to the dentist, it's in the fluoride treatment, so I have to say no to those. So it's, it's really everywhere and sometimes we need to take a blanket approach and just say, no, we're gonna make our own food.

We're gonna stay away from those. Another parallel between food dyes and—for folks with MCS—is that, you know, as you write, very small amounts of food dyes can cause a trigger. There isn't a large amount in a capsule of a medicine, I imagine, but it can still create a very strong reaction.

[00:25:48] REBECCA B.:
Yeah. Yes, just a little bit. And you're gonna get a carryover effect on some of the co—like the red and yellow carryover. Red can last in your system for 48 hours. So if you eat it one day and then you need it—eat it—the next day, so the second day is now a higher dose than the first day, and then you eat it again. Now you've, you've—you're just continuing it.

There's no break. And so it can be so little that could cause an effect that you're not aware of. And you can think that anxiety is normal. I always thought my level of anxiety was normal, right? Till it wasn't. And so when you do find that chemical that is affecting you—and it could be several; it could be a couple different chemicals—but when you find it, it's, “Oh wow, okay.”

[00:26:27] AARON GOODMAN:
It's like having your life back. One of the great things that I'm—take away from our conversation is that we have a certain level of control. There's a lot of work to do. Mm-hmm. A lot of research to be done, but we can make choices. What's challenging with fragrances in the air is that we have a lot less control.

I can't control what my neighbor uses in their—and that comes through their dryer vents and goes through my window and makes me ill. I can't control necessarily what the floor cleaners used at my children's school, for example, so mm-hmm. What do you make of that? That, you know, we, we are, we're in jeopardy wherever we go.

Yeah. It becomes very perilous.

[00:27:01] REBECCA B.:
It is very difficult when you can't control other people. And like you said, you don't know what the cleaners are. You don't know when the kids go and touch the desks at school—what was on those desks? The dentist—uh, our pediatrician or our pediatric dentist actually shifted all of his fluoride treatments to dye-free foam because of Alex.

[00:27:16] AARON GOODMAN:
That's great.

[00:27:16] REBECCA B.:
Yeah, it was good. And, and that's where talking to people and being that advocate can start to help make changes on, on a small level—

[00:27:01] AARON GOODMAN:
—but it's—

[00:27:16] REBECCA B.:
—

[00:27:01] AARON GOODMAN:
—often feels like a me problem, for example.

[00:27:16] REBECCA B.:
Oh yeah.

[00:27:01] AARON GOODMAN:
We talk about our judo club. We spend a lot of time doing judo as a family, and I'm the only one who's asking for fragrance-free, and I feel like an outcast, and it's very, very challenging.

[00:27:44] REBECCA B.:
It is isolating. We do get treated like we're those crazy people that are just—think they're special. And I've had people say, well, just avoid it. It's not that easy, is—just avoiding it. And so yeah, we, we feel that, and it's isolating—the disappointment that we feel regularly because we can't do what other people are doing.

We can't have what other people have. This podcast provides that support for so many, and that connection in such a way—

[00:27:46] AARON GOODMAN:
—that's just wonderful. Okay. Thank you so much, Rebecca.

[00:27:50] REBECCA B.:
Mm-hmm. You're welcome. Thank you so much for having me.

[00:27:50] 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 Brockman Hoffman Foundation and listeners like you. If you wish to support the podcast, please visit 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, and TikTok. And as always, you can reach me at aaron@chemicalsensitivitypodcast.org
Thanks for listening.

The Chemical Sensitivity Podcast and associated website are the work of Aaron Goodman, and 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 associated website do not necessarily reflect the views and opinions of its sponsors.