This episode of The Chemical Sensitivity Podcast is about finding community and supporting one another online.
Since so many people with MCS are dismissed and misdiagnosed by healthcare professionals, the internet is often a vital source of information about the illness. And because of the social isolation that many folks with MCS experience, connecting with others online and supporting one another can play an important role in many people’s lives.
In this episode, Aaron speaks with Brenda Fincher, a longtime administrator, and Shelley Petit, a member of The Multiple Chemical Sensitivity group on Facebook. It was formed about seven years ago, is one of the largest MCS groups online, and now has more than 8,200 members from around the world.
In their conversation, Aaron asks Brenda and Shelley about the role online community can play in the lives of people with MCS, how they have personally benefited from being involved with The Multiple Chemical Sensitivity group, and how they see their online activities as a form of activism.
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Aaron Goodman 00:05
Welcome to the Chemical Sensitivity Podcast. It's a podcast that amplifies the voices of people with MCS and highlights emerging research about the illness.
Aaron Goodman 00:16
The focus of this episode is finding community and supporting one another online, since so many people with MCS are dismissed and misdiagnosed by healthcare professionals. The internet is often a vital source of information about the illness. And because of the social isolation that many folks with MCS experience, connecting with others online and supporting each other can play an important role in many people's lives.
Aaron Goodman 00:41
In this episode, I'm speaking with Brenda Fincher and Shelley Petit. They've long been involved in one of the largest and most popular online groups for people with MCS. It's known as the Multiple Chemical Sensitivity group on Facebook. It's been active for about 10 years, and there are now over 8200 members from around the world.
Aaron Goodman 01:02
I've been a member for years and I'm continually grateful for the helpful insight people in the group share and the care and respect folks have for one another. It's not the only online group out there, but thanks to the dedication and hard work of its administrators and the thoughtfulness of its members, it's really a fantastic community. I'll share a link to the group in the write up for the episode.
Aaron Goodman 01:23
So just a little bit about our two guests this week. Brenda Fincher has been a longtime admin and member of the Multiple Chemical Sensitivity group on Facebook. She has MCS, lives in South Carolina in the US, has been married for 35 years, and has two twin adult daughters.
Aaron Goodman 01:40
Shelly Petit lives in Fredericton, New Brunswick in Canada, until MCS forced her to become housebound. She was a teacher, girls soccer and basketball coach, and a longtime Girl Guide leader and community volunteer. She's in a long term relationship with one of her biggest MCS supporters, has two adult daughters, and has dedicated her new canary life to advocacy, not just for those of MCS, but for people with all disabilities.
Aaron Goodman 02:07
Shelly currently serves as the chair of the New Brunswick coalition of persons with disabilities and believes that together we can make a difference. She has been an active member of the Multiple Chemical Sensitivity group on Facebook for a long time. I hope you enjoyed the interview.
Brenda Fincher 02:26
I'm Brenda Fincher. I'm from South Carolina.
Shelley Petit 02:29
My name is Shelly Petit. I live in New Brunswick, Canada.
Aaron Goodman 02:33
I'd like to start by asking you to talk a little bit about just some basic info for our listeners--roughly when it got started, and how both of you were involved.
Brenda Fincher 02:43
Actually, I found the group in 2016 and became a member. Ronda Burridge from New Zealand had started the group. And became an administrator within the next year to help out with the group.
Shelley Petit 02:57
And I came across it in 2019, right after I was put off work indefinitely with MCS. And thank goodness I did because it saved my life. It literally saved my life, the people in the group and the help they provided to me, were at a time when I thought I was going insane, because that's what I was being told by the medical community. This group saved my life without a doubt.
Aaron Goodman 03:20
Yeah, I understand that. It is such a valuable space. And I want to invite you to share more about how you've benefited personally and how you feel others have benefited. And so just to take a brief step back, the group has been around for roughly how many years?
Brenda Fincher 03:36
I think it started around 2015. Not exactly sure the day, Rhonda had started a group and then had to close it down for a couple of years and then started another group.
Aaron Goodman 03:50
So it's 2022 now, so that's seven years. Why did people who started it feel that Facebook was the right platform, because there are many options available in terms of social media?
Brenda Fincher 04:01
I think it's more user easy. And it kind of gives people the opportunity to not just look for information, but to pour their hearts out to others to find information, but also to get the support that they need.
Aaron Goodman 04:18
And right now there are 8,000 members. Has it been sort of a quick increase? a trickle? How was the result over time? Would you say?
Brenda Fincher 04:27
When I began, I'm thinking there were about 1000 members, and I think the thing is, more people are becoming aware of what they have because you can't really get a diagnosis with regular medical doctors.
Brenda Fincher 04:44
And so they start doing research and everything. So once they discover it, and it's also a comparison to the type of group we have. There are other Chemical Sensitivity groups, but their format and what they put on their page is--some are just information.
Brenda Fincher 05:02
And some have more limitations. Some are focused on more certain areas like housing, somehow block, herbal nutrition, or natural treatments, that type of thing. It depends on what the person that starts to group.
Brenda Fincher 05:16
I think sometimes it's what they've dealt with. And they feel like this is what I need to do.
Brenda Fincher 05:22
With our group, we allow people to vent, we allow people to express themselves, we allow them to share, and we do our best to keep it that no one else criticizes, so to speak. We're a support group, because a lot of people have no support. Their family do not understand, their doctors do not understand.
Brenda Fincher 05:44
And so many say, wow, I'm not alone anymore. I'm not the only one with this.
Brenda Fincher 05:50
It's like a big family, it always has been to me, I feel like Mama Brenda, you know, like a mother hen, don't mess with my family. Let's support each other, be kind to one another and be there for each other. People go through so many different things in their lives, and even going to counselors. They don't comprehend. Everybody wants to say it's all in your head. So it's just--just amazing. When you find out you're not alone.
Aaron Goodman 06:18
I've been a member of that group for maybe two or three years. And I've really benefited as well feeling, you know, a sense of belonging to community and validated and really connected.
Aaron Goodman 06:28
It's a wonderful group. And it's different than others, because of the characteristics that you're describing Brenda, and Shelly, perhaps I could invite you to talk a little bit about, what prompted you to reach out and join the group? And how would you characterize the nature of the group? Because I'm guessing you, you may be a member, a member of other groups?
Aaron Goodman 06:49
Or how would you compare because, to me, the reason we're having this one episode specifically about the Multiple Chemical Sensitivity Facebook group is because it's, it's really a special place. It's really unique. And so I'd love to hear you talk a little bit more.
Shelley Petit 07:05
You find the people that are quite similar to you in personality or an experience and they help you so much because I was home, I was just so lost. I was a teacher, I couldn't go into schools anymore. I kept collapsing.
Shelley Petit 07:21
I had no idea what was wrong with me. Luckily, not luckily, but when I collapsed in April at work, and I was brought into the hospital by ambulance, an intern said to me, she thought I might have mast cell activation. So she brought that up.
Shelley Petit 07:35
So I started looking that up and came across Multiple Chemical Sensitivities and started looking going, oh, yeah, that's me. So then I got into the Facebook group and started, you know, digging around for some information, and started expressing what was going on with me.
Shelley Petit 07:49
And for the first time somebody understood and people can help me out. And two people that came directly to me was Mama Brenda, and Mama Wendy. And both had been so helpful to me, when I was first trying to find my way.
Shelley Petit 08:04
How do you stay safe? And what do you have to do? Because I was so depressed, I was at a suicidal point, I had written letters to my two daughters, I had the pills, I had the wine, that was it, I was done.
Shelley Petit 08:15
And this group really helped. I credit them with saving my life because you're in such a terrible health position that you don't know what to do. It turned things around. And then even, you know, you go digging around through the files and you find information.
Shelley Petit 08:28
There's people from all over the world, and they have great information from all over the world, and it helps you out. And then you see what they're doing in other parts of the world, like in Europe in terms of chemicals, and it really helps push my advocacy here in North America. And okay, we have to get rid of some of these things.
Shelley Petit 08:43
We know that these forever chemicals are dangerous, they're bad. It really helps give us proof to push for that advocacy. Like we have to stop making money, the most important thing because when you read articles, you know, we're three generations away from living the true Handmaid's Tale of not being able to reproduce anymore because of these chemicals. And everybody being sick, like is that what we want? Is that what we want for our kids and our grandkids? Of course not.
Shelley Petit 09:08
So we have to start making these changes. And we have to start making them today. And all the chemicals that were used throughout COVID and are going to continue to be used because it's coming back again, are adding to people's illnesses. And we're seeing more and more people that are fitting into this category. And now, a lot of things with the long-haul COVID tend to fit very well on here as well. And it's going to be so many more people.
Shelley Petit 09:08
I mean, when I joined back in 2019, there were about 3,000 members, now we're at eight. That in and of itself should be terrifying to members of government, they should be going okay, we have to act now.
Aaron Goodman 09:42
The numbers really are growing. I've been watching that too. And it's distressing to see and it's also good to know that there is a space for people to join.
Aaron Goodman 09:51
I wonder if I could ask you, Brenda, your thoughts on--a lot of people comment in the group about the challenges of being believed by either medical clinicians and also family members, friends, etc. Because that's something you see a lot, people coming to the group asking 'what do I do to people understand what I'm going through?'
Brenda Fincher 10:13
95%, I would say has to deal with this because I didn't have access to Facebook. When I was diagnosed, an environmental functional medicine doctor diagnosed me in 2012.
Brenda Fincher 10:28
Even with that, and all the information, it's hard for family to totally change everything. I know when it's hard, and it's frustrating, because they'll try in one area. And then when you say, oh, I can't take this, or oh, I'm so sick. Or, you know, these chemicals affect us in a way that it's hard for us to express to them. And I can't matter because you're so sick. You know, you're so sick, it gives you such brain fog.
Brenda Fincher 10:57
It's very frustrating for family, the people out there that don't have an environmental functional medicine doctor with a diagnosis. It's a nightmare, because everybody wants to say you're crazy. Take a pill, you know how many people that has talked to me through messenger, my spouse says, take a pill, take a pill. That synthetic. We're on toxic overload already, we can't process these chemicals.
Brenda Fincher 11:24
And we feel dismissed and unvalued. We feel thrown away. I'm saying from experience, and you're already so sick, and you give up just like Shelley. You had to leave your career. I went down when my daughters were 10 years old. Crushed me. They were my life.
Brenda Fincher 11:44
It's hard. It's hard on the spouses. It's hard on the children. Your whole life. You can't go to church, you can't go to public places and get groceries, you can't go to movies, you can't get together with friends, it's really hard. So many give up.
Shelley Petit 12:01
You can't even go outside for a walk
Brenda Fincher 12:03
Shelley Petit 12:04
You can't go out for a walk without this mask on. I brought it with me. Like this is what I have to wear to open my door to let my cats in or out.
Shelley Petit 12:12
My cat, I'd go to the vet last year, I had to leave because I'm very fortunate my family is so supportive. I know I'm one of the rare ones. So I had to go stay at my mom's house for a week when they brought the cat back from the vet because of the smell that was on the cat so that I wouldn't be drop-dead ill.
Shelley Petit 12:29
But I've been lucky, I've had a really supportive partner, Norm, has been a lifesaver. He's seen me go down, he's seen me be walking and go down on the street because a diesel vehicle blows by or someone's got laundry products going or, you know, his two daughters aren't allowed in our house anymore, because they just can't get rid of enough products. Like it's just no, they're not allowed in. If they want to come over, it can be in the summer on the steps outside. But they're not allowed inside. Because this is my safe zone.
Shelley Petit 12:58
My mom has been really good at 78, changing everything in our house. My daughters for 21 and 27 have been really good. They have their own clothes for when they come back home to visit they're--they get rid of their makeup, they do all their hair with vinegar, their clothes with vinegar beforehand. So they've been really good, but they've seen me go down. And they saw how distraught I was.
Shelley Petit 13:20
A lot of my friends are gone from my life because they just couldn't deal with it. I just didn't have the energy left to try to deal with them. So I just moved on.
Shelley Petit 13:30
And it's terrible to do because we have to isolate ourselves from the world. But it's what I've done between this group and working with them and talking with them. And that and then with the other advocacy group that I'm involved with in New Brunswick just for persons with disabilities, I have a lot of online friends.
Shelley Petit 13:47
Yeah, people can say whatever they want, they are just as valuable in making those connections here and here. Because with disabilities, they're isolated as well between COVID and between the physical barriers that exist. So yeah, you know, it, it gives you such a sense of purpose and function again, which has been so important for the brain, which keeps you from spinning out of control.
Shelley Petit 14:11
I think that would be my biggest piece of advice to anyone, is find a group that you can do a little bit of advocacy with that you don't have to commit to full time because you can't always do things because you have exposures from Lord only knows what that comes in through the window. But something that you can do as a function so that you feel like you're still valuable, because this disease makes you feel so thrown away and so invaluable. And when you get that value back, it's amazing.
Aaron Goodman 14:42
The isolation that many of us face in the space and the sense of purpose that you've gained by being involved and I wonder, Brenda, that's something, as an administrator on the group for a long time. What's that done for you?
Brenda Fincher 14:59
I believe one of the reasons that I was asked to come on was because my compassion, you know, I was sitting here feeling worthless, but I could reach out to someone else and encourage someone else. If I could help one person, it made my day just a kind word: 'Sending you hugs.'
Brenda Fincher 15:18
You know, I had went through a lot before I joined Facebook. So I had learned not everything, but a lot through my environmental doctor. And just my own experience. Yes, it was a nightmare, leaving my home, sleeping in my car. Because of issues with my home. It was difficult, but had I not walked that path.
Brenda Fincher 15:40
Even though I'm a very caring and compassionate person, I could never understand what another person was going through. Whether I am an administrator, or I am a member, I felt like I could always encourage others and share what information I had learned and be supportive, but as an administrator, a sweet and sour, because it's really sweet and wonderful to share information to help others, to encourage others.
Brenda Fincher 16:08
But then it's also very difficult. When you see somebody crashing, you see them lashing out to members in the group. The hardest thing for me, and I'm telling you, this is hard. And I still will give every sprint I've got in my body till the day I take my last breath.
Brenda Fincher 16:28
It's finding a way for these people to get safe housing and get the financial help that they need. Some people have to leave their homes, they have no clothing, you know a person's house burns down. People can send them clothing but they can't use it because it's contaminated. New clothing is covered in chemicals. If somebody gives you their hand me downs, it's loaded with their laundry detergent, but they don't understand and they get offended. I wanted to incorporate--like the Fun Friday, because people need laughter.
Aaron Goodman 17:03
Talk about the Fun Friday, what is the Fun Friday?
Brenda Fincher 17:06
I started the Fun Friday and you know, the reason I started it is it's--I learn every day, I need to find something to laugh at. If a person is constantly being bombarded, everything's negative in their life, they spiral down more, laughter is good for you. Whether you're sick or not. Laughter is good for you, no matter what you're going through. And I just one day decided, you know, every once in a while someone would share encouragement post or someone would share a joke. If I went on a funny page. And I was like, you know, this helps me feel better. Let's start a Fun Friday and get people to participate. People love it.
Aaron Goodman 17:48
People post memes.
Brenda Fincher 17:50
Yes! That makes you laugh, make jokes to make you laugh. Friday, everybody just saves up during the week. Anytime someone--maybe they can't participate that day they can--I allow them to share over the weekend or other times. But I was like put Fun Friday on it. And then if you can come back later and use that search word, you're having a bad day, pull this up, it helps you forget about your problems. It just takes your mind away from all the terrible things going on in your life.
Shelley Petit 18:22
It's almost a contest on Friday, to see who gets there first to get the first joke up.
Brenda Fincher 18:26
If I was late, and I forgot, it got to where they were just 'I haven't seen it started yet. But hey, um, you know, starting my Fun Friday', they really look forward. They really do.
Aaron Goodman 18:38
I wanted to ask Shelley perhaps and then Brenda, is there one moment? Or well, maybe one thing because you have such a vast amount of knowledge. But is there one thing?
Aaron Goodman 18:50
Perhaps you know, you've talked, we've talked a lot about the comfort and solidarity, the sense of community. Is there anything sort of factual? Because it's very complex, right, in terms of what do I--do I take supplements, do I buy a sauna, what kind of food to eat? Is there any, on, in terms of like a practical confirmation that you've learned?
Shelley Petit 19:10
Yeah, I find Role, and he's over in Europe, has helped me out a lot with masks. So he brought me along the way, because different people, depending on their sensitivity, need different masks. So a lot of people use some of the more cloth ones. Those didn't help me at all. And he gave me different ideas for personal assistants, respiratory devices, he's also given me a really good idea of how he does--he has a vest that he wears.
Shelley Petit 19:35
Because as COVID is, mask mandates are done where I live now. So when I go with my mask on, even though 95% of the population is still wearing masks, I get the kids that point, or actually the adults that point and laugh.
Shelley Petit 19:49
So based off an idea that he does I have a little business card with a QR code. And when you scan the QR code, it brings you to a little website that I made that doesn't have a lot on it, but just a little bit about MCS, some factual things that I've taken from the Multiple Chemical site and from MCS Canada's wall and just post it.
Shelley Petit 20:06
And so people are saying something, whatever, I just go up and give them the card and it says, This is not for COVID. This is for my disability. And then it's got the QR code if you want to know more scan the QR code I've actually had between that and newspaper articles that I've been invited to do.
Shelley Petit 20:22
I've pinpointed about nine other people in the area where I live, who--same thing, 'I thought I was crazy, I thought I was the only one'--who are now--now have some information, are now booked in to see Dr. Fox because he's a specialist in Atlantic Canada. He's a complex or an integrated chronic care specialist. It's just helping to get that information out there.
Shelley Petit 20:42
There's a lot of information or files, people have made up letters for doctors, there's a list of all the different environmental doctors in North America that you could go see for help. There's, you know, lists of different ways to do your clothing.
Shelley Petit 20:55
So people are starting lists that there's more and more bed and breakfasts or Airbnbs are starting to become--understand--become more chemical-free. So people are listing some of those.
Shelley Petit 21:06
So there's a lot of stuff there. And if you're not sure and you ask a question, just like anything on Facebook, you have to be discerning in what you read. But there's so much information that goes out there, you can ask a question.
Shelley Petit 21:19
And I know from years of being on that page, whose opinions I really value, who lives their life like me. So if I ask a question, and Brenda answers it, I know that that's good information, if Wendy answers it, if you and like I know who's giving me good stuff, and it helps me out tremendously.
Shelley Petit 21:36
And then there's other people are maybe not as sensitive and aren't quite there yet to live in total isolation, they'll value other people's opinions. And that's okay, if they're not ready to get to that point yet, even though it would be better for them.
Shelley Petit 21:48
You have to do it at your own pace, right, you have to do it at your own pace, or you're just gonna be resentful all the time. So I find the page has been tremendous for me. And now when I need to see my--just my regular GP, he just basically asked me like 'I don't know' he says, 'I don't know anything about it. I'm retiring in a couple of years, I'm not gonna know anything about it. You tell me what you need. And I'll sign the form.' And that's what he does.
Brenda Fincher 21:50
To share my environmental doctor, when I went to him, he gave me a packet. Here's my guidelines. Number one, eliminate all toxic products, whether it's personal, or whether it's something you clean your house with, or something that you do your laundry with, make a safe room. One of the biggest things, get the carpet out of your bedroom, hardwood, or ceramic floor, historic home for mold, everyone cannot afford a sauna. So you know, you have to find some detox protocol, which he directed.
Brenda Fincher 22:47
And I do think it's best if a person can at least you know, if you've got gut issues, you've got to get it addressed, because you can take all the supplements on the planet. But that's not necessarily going to help you. There were a lot of tips and things that he gave me to follow to start healing. He said, 'If you build your immune system up, you can improve this greatly.' And infrared sauna was something that he highly recommend. Water filter, shower filter, things like that. You cannot detox synthetic chemicals out of your body just through your liver, you have to work hard at it.
Aaron Goodman 23:18
And I think that it's helpful because not everyone has access to a doctor who has knowledge in MCS, so you're sharing the information, and then people can decide whether it's relevant to them or not.
Aaron Goodman 23:40
You've noted then the amount of stigma or misunderstanding that a lot of people in the wider population have about people with MCS, we're still really stigmatized, I think you've both described it as being thrown out or thrown aside.
Brenda Fincher 23:54
I have encouraged people, let's do email campaigns. Let's do advocacy. I've encouraged anyone to start a group, start a sister group, address this issue, address that issue. The thing with Facebook is getting so much information out there, and educating others of the dangers of the chemicals that are being used in our environment all the time.
Shelley Petit 23:54
It may not help the stigma in society, but it helps us with the idea of the stigma that we face to know that okay, you're just uneducated.
Shelley Petit 24:26
I often refer to--back to Fibromyalgia 10 years ago, this is how they were treated. So it's gonna take time, there's been some great articles out, like very well researched medical articles that I like to share, and share and share because those help get the ideas across as well.
Shelley Petit 24:31
It's important that when we discuss it, that we do it not while we're under an exposure, because we know we get cranky and testy because we're so sick, and I try to explain it afterwards when I'm in a good state of mind because people just turn the negativity off, right? They don't want to hear it.
Shelley Petit 24:58
And I just keep trying to remind people about how important this is and how important it is for your children down the line. Do I think that I will see it changed in my lifetime? Probably not. But we're going to keep working at it, working at it, working at it. And using the proof that we have from medical journals, and eventually it's going to get there.
Shelley Petit 25:17
Like I have a little bit of faith now in the Canadian government with the study on the forever chemicals. So there's little things that are happening. They're tiny, but every tiny step eventually leads to a bigger step. So we're getting there, and 8,000 people, the more we talked about it, the more it's going to resonate. And the 8,000s going to turn into 20,000. And then when we're 20 or 30 or 50,000, people have no choice but to listen.
Brenda Fincher 25:36
At one point in my life, I used to apologize all the time. I'm sorry, I'm sorry. And I had a MCS counselor friend say quit apologizing. It's not your fault. Take your power back.
Brenda Fincher 25:56
Basically, I was told, get rid of the victim mentality. I don't owe you an apology. Because you are wearing toxic chemicals. It doesn't just affect people with MCS, they really need to wake up, because you may not develop the MCS, but your regular medical physician, and I respect them, they go through a grueling many years of education, residency and such, but they are not trained. That's just like, if you have a heart doctor, he specializes in your heart condition. If you have an environmental functional medicine doctor, they specialize in people being poisoned, basically. Quit apologizing. And it's hard for families to and I just, it's hard for us to explain to families and everything, but you're valuable, you are loved.
Aaron Goodman 26:48
I just want to thank you again for taking time to speak on the podcast and for all the work you do on the Facebook group and invite you to share any last thoughts.
Shelley Petit 26:58
I just want to thank you for doing this, Aaron, because this is, again, this is one of those steps that brings awareness, and awareness is what's going to bring the changes in society. So thank you so much for doing this.
Shelley Petit 27:10
And it's a whole new podcast for me to listen to, you know, if you're listening to this podcast, because you think that this may be something affecting you, come to the webpage, there's no judgment, and you're gonna find people that are going to help you. And if it's not what you have, they probably know the answer to what you have, because we've been through so much.
Shelley Petit 27:28
And all we want to do is help people feel better about themselves so that they can live the best life they can as a canary, because that's what we are. We're the canaries in the coal mine of yesteryear, and we want to make a better world for, for us and for everybody else out there because these chemicals are toxic, and eventually the governments are going to have to come on board and stop allowing them to be sold. That are we're all gonna be dead. So take your pick. Like I hate to say it that way. So, you know, the governments are gonna have to smarten up.
Brenda Fincher 27:57
We're approaching businesses, different areas, one at a time, the more of the people that come together, the more we are going to be heard. But I want to encourage everyone whether they have chemical sensitivities or not, check your products out, go to PubMed. The National Library of Medicine is not just a website that anybody set up, this is research that proves that these pesticides and all these other things are what's causing a lot of people's health issues. It's affecting your animals, and it's affecting our environment. And it is very unnecessary. Convenience is not worth destruction.
Aaron Goodman 28:38
We'll definitely link to the Facebook group. Again, thank you so much. It's been really great to come together and hear from you.
Aaron Goodman 28:46
That brings us to the end of this episode of the Chemical Sensitivity Podcast. And thank you to Brenda Fincher and Shelley Petit for joining me. The podcast was produced by me Aaron Goodman, Danny Penaloza and Emma Bolzner. Please subscribe to the podcast to never miss an episode wherever you get your podcasts, and follow us on social media. Just search for the chemical sensitivity podcast, or podcasting, MCS. Get in touch. If there's someone you'd like to hear interviewed on the podcast, just let me know. Email me at firstname.lastname@example.org. I'll definitely respond. And thanks so much for listening.