The Chemical Sensitivity Podcast

Episode 29: Man on a Mission: A Very Deep Look at MCS. A Conversation with Don Want, Ph.D.

July 03, 2023 Don Want, Ph.D. Episode 29
The Chemical Sensitivity Podcast
Episode 29: Man on a Mission: A Very Deep Look at MCS. A Conversation with Don Want, Ph.D.
The Chemical Sensitivity Podcast
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Episode 29 of The Chemical Sensitivity Podcast is available now!
 
 Subscribe wherever you get your podcasts.
 
This episode is called “Man on a Mission: A Very Deep Exploration of MCS.” 

It features a conversation with Don Want, Ph.D., whose children's experiences with MCS led him to write perhaps the most comprehensive information about the condition. 
 

You’ll hear Don explore: 

  • His own family’s experience with MCS. 
  • Whether there could be diagnostic tests for MCS. 
  • How many people with MCS also have other conditions. 
  • His thoughts on the name, Multiple Chemical Sensitivity. 
  • Why many healthcare professionals misdiagnose people with MCS. 
  • And more.

Don Want’s 2022 PhD dissertation on MCS:
"Environmental Effects on Health: Ignorance and Undone Science."

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Aaron Goodman  00:05

Welcome to the Chemical Sensitivity Podcast. I'm Aaron Goodman, host and founder of the podcast. I'm a journalist, documentary maker, university instructor and Communication Studies researcher, and I've lived with Multiple Chemical Sensitivity or MCS for years. I'm away from my usual recording spots. So you may hear an echo as I'm speaking in the intro and at the end of the podcast, but we're going to continue to roll out exciting episodes over the coming weeks and months. So stay tuned and please subscribe wherever you get your podcasts. 

 

Aaron Goodman  00:39

As you know, MCS is also known as environmental illness, chemical intolerance and toxic and induced loss of tolerance or TILT, and it affects millions around the world. Many with a condition are dismissed by healthcare workers, employers, friends, even family, countless people with MCS struggle to find healthy housing and get accommodation at work and school and we suffer in all kinds of ways. The purpose of the Chemical Sensitivity Podcast is to help raise awareness about MCS and what it's like for people live with it. 

 

Aaron Goodman  01:10

We featured interviews with some of the world's leading experts and researchers on MCS, and lots of people with the condition and we're just getting started. If you like the podcast and want to support it, please find links on the website and in the show notes. The website is ChemicalSensitivityPodcast.org. Your help allows us to continue making the podcast and create greater awareness about MCS, thank you so much. We really appreciate it. 

 

Aaron Goodman  01:36

This is Episode 29 and the title is "Man on a Mission. A Very Deep Exploration of MCS." It features a conversation with Don Want Ph.D. based in Australia. Don has an engineering background and was introduced to environmental health effects when two of his young sons experienced unexplained health effects in their early lives. The poor treatment that he and his wife received by healthcare professionals when they were trying to find the causes of their son's conditions is what initiated the research into environmental effects. They then went on to identify environmental exposures as the reasons for the son's conditions, which then allowed them to regain their son's health. It's been about 35 years, that Don and his wife have been doing research in this area in the background of their busy lives. Earlier, Don had been publicly active recognizing chemical exposure effects on health, particularly with pesticides and many consumer products and became involved in public interest groups as well as some governmental working groups. One state he was a prominent local media interviewee but later withdrew from such a prominent role so his family was not highlighted so much. Don has recently completed a Ph.D. dissertation titled "Environmental Effects on Health, Ignorance and Undone Science." His central thesis is that there are ample published scientific studies that show that environmental exposures can explain most of the chronic diseases in our modern society. But he argues the conventional medical system does not recognize or take such exposures into account. 

 

Aaron Goodman  03:18

In our conversation, you'll hear Don explore his own family's experience with MCS, whether there could be a diagnostic test for MCS, how many people with the illness also have other conditions? His thoughts on the name Multiple Chemical Sensitivity, why many healthcare professionals misdiagnosed people with MCS and a lot more. I hope you enjoy the conversation and find it a benefit. 

 

Aaron Goodman  03:43

We release new episodes twice a month. Please subscribe wherever you get your podcasts. You could find us on social media, just search for the Chemical Sensitivity Podcast or podcasting MCS. Leave your comments about anything you hear on the podcast and please share the podcast with others. If you'd like to read transcripts of the podcast, please go to the website ChemicalSensitivityPodcast.org. Click on any episode you like then click on transcript. Or you can find the Chemical Sensitivity Podcast on YouTube and read captions in any language you like. Leave a review on Apple podcasts. It's a great way to help others learn about the podcast. If there's someone you'd like to hear interviewed on the podcast or a topic you'd like us to explore, just let us know email info@chemicalsensitivitypodcast.org and thanks for listening.

 

Aaron Goodman  04:43

Well, Don, thanks so much for taking time to speak on the podcast, so much knowledge and expertise. I've been really looking forward to speaking with you. So again, thanks for taking the time. Could you start off by sharing with our listeners a little bit about yourself and your own background with MCS. Is it a condition that you live with? And if so, you want if you're comfortable talking a little bit about how it came about for you, and when?

 

Don Want  05:11

I think like most MCS sufferers some everyone's got quite the story. I don't suffer from MCS myself. I'm lucky. However, I have had my family severely impacted my wife, slightly chemically sensitive, but two of our five sons chemically sensitive, and our introduction to chemical sensitivity was a hit and miss affair originally when we had health problems with our first and third son especially. And we, we had, you know, unexplained health problems with both of them. And we went through the medical system. In Australia, particularly Sydney, the medical system didn't come up with any explanation for their symptoms.


Don Want  06:14

And in one one case, our pediatrician suggested we look into environmental effects. And we started out by analyzing one of our sons, some blood for heavy metals and hydrocarbons. And the blood results came back with significant significant levels of both in and our son. And at that stage, he was actually in hospital in Sydney. And we just simply innocently asked the doctors down there with this have anything to do with these unexplained health problems. And from that time forward, everything changed, we were treated quite differently. 

 

Don Want  07:02

My wife who stayed in the hospital, most part was treated quite differently to the nurses as if we were being watched. Long story short, they were setting us up for Munchausen by Proxy, which means that were causing our child's health problems. And so as soon as we realized that that was happening, and before our children were taken off us, we simply pulled out, stayed to the ground and started researching how possibly all these chemicals could be in our sons. And that started our whole journey. 

 

Don Want  07:44

In this chemical sensitivity, side, and further abbreviation, as we modified our home environment, ate organic food, you know, pulled up, carpets pulled out insulation from the roof moved, you know, after having moved to a good area with a fresh sea breeze, our son's health gradually improved. And, and then, of course, it started all over again when they started school, but we gradually, you know, educated ourselves the hard way. And once the media had picked up on our story, and we came out in the paper, local paper, who were just deluged with other families in the same situation as us, and realize it's not just us, it's right through society. And, and it's it is a significant problem. 

 

Don Want  08:46

So, fast forward decades, my children now grown up, have their own families and because of their awareness of their condition, their children have benefited greatly and lead normal lives after they left. And, you know, after my work situation settled down fairly well, I started to do a Ph.D. on environmental health effects on health, you know, environmental effects on health rather, and looking particular into the ignorance and undone science tied up with that. And I've just completed that PhD.

 

Aaron Goodman  09:28

So it was really your own family situation, I gather that motivated you to take on this enormous project of doing a Ph.D. So before we dive into your, the research that you did, which I think it will be very beneficial for listeners because you have so much knowledge and really your thesis to my mind is one of the most thorough documents that exists about MCS, so we'll share a link to the dissertation in the show notes for listeners as well. publicly available. But before we do that Don, there are a lot of listeners in Australia, but it's a podcast that is listened to across the globe. Could you talk in broad strokes about the situation in terms of MCS for Australia?

 

Don Want  10:15

Yeah, Aaron, I really think that Australia is no different to what I can see from the US. You know, it's estimated in many studies that somewhere between 10% and 27% of our population are chemically sensitive. And there's many papers coming up with many numbers on that. So that's a significant portion of our population of Australia has experienced the Munchausen by Proxy scenario, probably more than the US because, you know, in some hospitals in Australia, that diagnosis criteria put on parents who push the medical system for answers. And you know, why they're not looking at chemical sensitivities. 

 

Don Want  11:10

As such, a lot of hospitals tend to write them straight off the the, you know, it's a, it's a convenient psychological diagnosis. The only thing is it's just pulls families apart. I know, we're out in the cotton farming belts in the past decades in Australia, there were a lot of effects on children. And they all ended up in Sydney, there were aspects of, you know, the records, like for neuroblastoma, there was a particular area in the country in Australia that had a very high incidence of that in children. And yet, the children were taken to Brisbane hospitals, Newcastle, Sydney, and even Melbourne. And then the statistics for neuroblastoma cases, showed up in those cities, rather than where they came from, and it was simply watered down that way. So I'm sure similar things have been happening in the US and my research, my Ph.D, you know, probably about 70, or 80%, of the material on the sociological aspects, was in reference to the US rather than Australia, because of the size difference the US to Australia, if there's a small percentage of researchers exploring this area, then the US has got more than Australia has simply in numbers, but there are some notable exceptions there in Australia, but the AMA, and sorry, the Australian Medical Association and other associations like that, tend to really put the thumb down on practitioners that start to recognize it, and the medical board is such equivalent over here. APRA will deregister doctors who seem to be, you know, not using recognized diagnostic criteria on their patients. So if you're, if they are wanting to do extra tests on them for environmental effects, then because it's not recognized in the medical system, then they can be up for sort of supposedly ripping the patient off in charges for excess testing, and the like. So yeah, that's that's the situation in Australia. I don't think it's much different in America. Very frustrating situation.

 

Aaron Goodman  13:58

Before we go into your thesis, can you talk a little bit more about, you know, take us back to if you could, when your children got ill with Multiple Chemical Sensitivity? Can you talk a little bit about where you were living about what time period this was? And were you living in agricultural area? And have you noticed a change in the attitudes of the medical profession, by and large in terms of their response to MCS since that time?

 

Don Want  14:36

When our children were young, and when we started making the connection with chemical exposures to health with them, we were living in a country, New South Wales town, near the coast, which in the agricultural industry, the main cropping done was bananas and they were positioned up on the hills, along the ridge lines and so forth. It was common to airily spray fungicide on those bananas, we lived kilometers away from the nearest Banana Farm. We, I suppose if we had a telescope we could or binoculars, we could see the nearest Banana Farm, it's just that we were that far away from it. But, you know, the connection that we found was, was not essentially straight with these bananas. 

 

Don Want  15:40

But over time we found it was everything added up with our children, we decided to eliminate the agricultural connection by me eventually, after, after, you know, taking things into our own hands with our children's health after being really let down by our medical system, I started to talk to a lot of the balloon operators, you know, tourists balloon, you know, taking people up in a balloon and starting to understand the local air movement patterns around that town. And then I studied where we could move to, to get out of the wind pattern so that there was never a situation where the agricultural spray vapor drift or low drift could come towards our place of residence. 

 

Don Want  16:38

And luckily, we did find a place and it was about a kilometer off the coast. So we had quite a good component onshore sea breezes, and we were free of the local wind patterns in the banana agricultural area of that town. And when moving in, I just simply ripped up all the carpets took out all the insulation in the roof. It was a brick, a bare brick building. So didn't, wasn't painted inside, it checked a lot of boxes. And we gradually and you know, like, at the same time, we had changed to organic diet. And we were watching and being you know, quite aware of all the other chemical exposures like gum, tech stick pens for the kids and things like that. 

 

Don Want  17:35

Anyhow, after doing all that modifying our environment, the way in which we were living, the children just got better. And they were preschool age, when we were doing all this. And we all of a sudden had healthy children back again, although if we were out and there was a chemical exposure, then one or both of our chemically sensitive two sons could go down might be as easy as a headache, or, you know, gastrointestinal disruption or something if it was worse. So that was quite good. 

 

Don Want  18:17

And then when they got to school age, of course, we came up against all the exposures at school. And that that sent us down yet another path to have to deal with the school environment. And luckily, you know, like, although we we gradually tried to get onto the Parents and Citizens Association and tried to come up with sort of green alternatives, many of which were cheaper than the commercial products like cleaning products, we could gradually improve their environment there, although there were some teachers that thought we were nuts and actually exposed one of our child children at one stage to a whiteboard marker. And after seeing his reaction, we're quite alarmed and believe this from there on. So yeah, it's it's quite a story. I'm sure one day I think I'll write a book on it, but I'm sure there's many other stories out there by your other MCS sufferers.

 

Aaron Goodman  19:27

Part of what you write about in the thesis is currently and you noted in your own family's experience, and many listeners will know too that very few medical professionals diagnose people with MCS, in your view, Don, do you think there could be a way for healthcare professionals to to diagnose people with MCS as we go forward? You write about the French physician and researcher Dominique Bellepom, can you talk a little bit about the connection there but between how you see a future path to diagnosis and the work that Dominique Bellepm is doing, please.

 

Don Want  20:07

Yeah, as you know, there's been many hypothesis put forward to explain MCS like neurogenic inflammation sensitize sensitization of limbic neurons, classical conditioning, oxidative stress involving nitric oxide peroxy nitrite. And the common denominator of the model seems to be the assumption of an acquired persistent hyper reactivity most often developed during a period characterized by a high strain on the body systems. But yeah, relatively recently, Bellepom et Al, in 2015 produced a paper which took on a study which was conducted over some years on 727 self reported MCS and or EHS cases EHS is Electro Hypersensitivity Syndrome. It was found that they can be objectively characterized and routinely diagnosed by commercially available simple tests. And the simple tests involve inflammation related hyper hist anemia, oxidative stress, auto immune response, capsules, fel EMIC hyperperfusion I'm sorry about the the words and blood brain barrier opening and a deficient deficit in the melatonin and melatonin metabolic availability, suggesting a risk of chronic near neuro degenerative disease. So the main thing of this study was the fact of the common co occurrence of EHS and MCS suggesting a common pathological mechanism. 

 

Don Want  22:11

The, there's been other studies to like Era Garay in 2018 confirmed that ultrasonic cerebral tomas five monography is the best imaging technique for the diagnosis of EHS and to monitor patients being treated for both EHS and MCS. But there's an absence of objective diagnosis criteria in in psychology. So as you know, MCS is quite frequently written off psychologically. So you know, there's no objective diagnosis in that area anyhow. And while depression is commonly diagnosed in MCS suffers, there's much evidence that depression itself is introduced by various environmental exposures, and other psychological conditions such as ADHD and lack clear diagnostic criteria. 

 

Don Want  23:17

And in my thesis, I actually found is probably about five to 10 times more studies done on MCS than ADHD by the way, yet ADHD is readily accepted. And MCS isn't. But the mechanism complexity and the overlaps with many other diseases, I have found quite significant. And it illustrates the difficulty and large number of tests required to establish the mechanisms for MCS demanded by orthodox medicine, the value of insisting on a mechanism becomes an excuse, and a stalling tactics, a stalling tactic for orthodox medicine in not recognizing MCS, I'll leave it there, but I could talk about the overlaps in in other conditions that MCS has. Yeah, I don't see it as as a standalone, self contained condition.

 

Aaron Goodman  24:30

That's right. And before we go there, you know, just to recap, you've pointed to several tests, complicated words, as you know, but the tests that, if I understand correctly, can find physiological indications or markers that there is an illness happening here that someone with MCS is actually experiencing, you know, responses in the body. And so are you saying that those tests are available but just are not advanced enough or used enough? Or...

 

Don Want  25:19

They, they are. They are commercially available simple tests. However, in that combination, the test for all those aspects is not recognized by the medical system. So, a doctor pursuing all those tests, maybe pursued themselves by the medical system administrators that he's over servicing, you know, his patient for an unrecognized diagnosis criteria, you know, like an unrecognized disease.


Aaron Goodman  25:56

Is it the case, you know, if someone has the financial resources to go to an independent, you know, clinic specializing in Environmental Medicine, that those tests that you talked about, can be provided. But is it the case that in like the publicly funded medical system, as you say, the doctors who asked for these will be reprimanded? Or will be barred from ordering these tests? Do I understand that, right?

 

Don Want  26:27

Yes, they're not so much bad, but you know, they will be watched. And if they're anything a little bit, recognizing environmental effects, they're already on the, the to be watched screen by the Medical Association's anyhow. So yeah, they're there to frighten themselves to go down that path. But as you say, you could do these tests yourself. But the other aspect to consider too, by the way, is in any established in the establishment of a diagnostic criteria. Although this paper was quite good in the fact that it had the numbers, 727 cases that they looked at, and and tested for, that's significant. But one paper on its own is not enough. 

 

Don Want  27:26

In science, we need two or three more studies done in the same vein to see if it's consistent by independent researchers. And that's what the conventional side will always argue against Bellepom's study, the other other aspects to consider. And you know, like, where we're being too normative, you can be too normative. In this quest for diagnostic criteria. We're essentially trying to play their game to try to get recognized for a disease that we have, which is currently not recognized. I know that's important. But you know, for the individual, they simply know the consistencies. And the functional medicine doctors also see the consistencies. So what about the diagnosis? Let's keep going anyhow and attention this problem? That's that's sort of what I'm getting at.

 

Aaron Goodman  28:38

Yeah. And I think, you know, that requires physicians to listen a little bit or a lot more to people with MCS, instead of writing us off or dismissing us, I believe. Is there enough research being done that can add to the momentum, perhaps so, so we can perhaps hope that one day we can get physiological tests that prove that we have an illness? Do you think that could happen in the not so distant future? 

 

Don Want  29:13

With the Bellepom study having been done? It's essentially the first step of many in that process. The the biggest problem is like, it wasn't just one or two tests, it was quite a number of tests. And, you know, they they are essentially regarded as being unrelated. You know, like, it's like looking to the extremes of things if I was adopted and ordered that set of tests. So you know, there is not a universally accepted of course, diagnostic criteria in a simple one or two lab test criteria, you know, for this illness, but, you know, then you've got, you know, the demand for parallel studies to establish those tests has been definitive, as I've just mentioned. 

 

Don Want  30:14

But you've got to realize conventional medicine is in conventional medicine. Multiple symptoms result in this belief by the orthodox medical practitioners. Their training frequently leads them to regard individuals complaining of multiple organ problems, and accompanying neurological symptoms as having a psychological problem. To date. No unique signs, pathology, lab tests or consistencies in illness project progression, have been clearly established for diagnostic purposes. So it is not a definable disease that can be traded consistently by drugs, which is in itself a conundrum anyhow, because drugs is a form of chemical exposure. And, by the way, the conventional medicine system does not recognize my new chemical exposures affecting health yet, it will prescribe my new chemical exposures in the form of drugs to all their patients for health effect. 

 

Don Want  31:31

But anyhow, I digress there. But yeah, the essentially the Orthodox medical system is ignorant and ill equipped, untrained and not organized to handle chemical sensitivity, health conditions. In fact, Bellepom's array of tests would be feared by most conventional doctors, because they could be threatened, as I said before them by the medical authority. Common frustration of doctors is that the diagnosis of these conditions rely on the patient's self reports as a result. And that also becomes an insurance industry nightmare for MCS to be formally recognized, without diagnostic criteria are independent from personal opinions. So it's a vicious circle. 

 

Don Want  32:24

But the environmental causation of MCS also challenges the one size fits all mentality of the medical system, influenced by the pharmaceutical industry, where diagnosis, Drug Administration and vaccination are done on the basis that everyone is similar. And even in drug research and treatment of patients based on an average human, never making any allowance for a sensitive subset of our population. When a doctor starts to question such an approach, they're criticized by their peers. It is pertinent to note that it has been observed generally that if people who question the standard view or view backed by powerful groups regularly come under attack, then it is plausible that suppression is involved. And that's been the conclusion of many papers written on that subject.

 

Aaron Goodman  33:22

Well, maybe we can unpack that a little bit. You know, you talk about attack and resistance by the medical profession as a whole to engage in inquiry about MCS to acknowledge people with MCS. People with MCS often have illnesses like Lyme disease or respiratory conditions, skin conditions, autism

 

Don Want  33:57

Well what I found... Well, I found an enormous overlap between a number of conditions like I already referred to EHS and MCS environ, environmental hype, sorry, Electrical Hypersensitivity Syndrome, like 70% of MCS is seem to have EHS so you know, like, that was the EHS overlap and then there's chronic fatigue syndrome, fibromyalgia syndrome, chronic inflammatory response syndrome, and some some people just call a condition chemical sensitivity rather than Multiple Chemical Sensitivity. And yet, you know, like, they're recognizing CS as separate from MCS.


Don Want  33:59

Anyhow, I just found that in my research And then there was Gulf War Syndrome, post traumatic stress disorder PTSD, mylga encephalomyelitis, ME, the Vietnam veteran health problems, lupus, irritable bowel syndrome, yes, and even Lyme, and like, what I was finding was, there was all this siloed research happening. So in other words, all the researchers on these other conditions were just studying each condition on its own. So the tendency for the study group in these studies were to, for example, if I was looking at chronic fatigue syndrome, then I'd possibly exclude people with MCS, and all these other conditions, so that it would be only chronic fatigue. So instead of using 100, people with a variety of these symptoms, they'd narrow it down just to 10 people or something that they perceived was not an overlap, or confounding with another condition, just to research that on its own. 

 

Aaron Goodman  33:59

What have you found?

 

Don Want  35:19

And that's the tendency in science today, you know, we want to compartmentalize everything and keep it down, you know, just to studying one thing at a time. And, and that is yet the other aspect of this whole chemical exposure versus health problem. Whenever a chemical product is produced, or even one chemical on its own, then it's just tested on its own for health effects. And if you're going to test one chemical on its own, what endpoints are you going to test it for? Are you going to test it on its effect on the respiratory system? Or, you know, the liver detox system? Are you going to tested on the immune system effects or neurological effects, you know, they're just simply try to select endpoints for one chemical exposure in a controlled environment. In healthy subjects, or subjects, just with one condition. 

 

Don Want  37:28

No one is looking at the whole aspect of environmental exposures where you've got 1000s of exposures happening at the same time, with a you know, like, electro magnetic fields coming across our Wi Fi as cell phones, and so forth, as well as the radioactive component building up in the background in some areas. So, you know, like, it's just a minefield, but all I'm getting at is to really get a handle on this to focus on one area MCS alone. You're probably, I suppose in when one aspect, putting blinkers on if you just study that effect on its own, because it's part of so many others.

 

Aaron Goodman  38:22

Hi, this is Aaron just pausing briefly to say thanks for listening to the Chemical Sensitivity Podcast. This is Episode 29. And you're listening to a conversation with Don Want, Ph.D, Don recently completed a Ph.D focused on MCS, his own experiences as a father of children with MCS led him to write his dissertation, which is perhaps the most comprehensive information out there about the illness, I encourage you to check it out. It's a fascinating read. So I'll provide a link to the dissertation in the show notes. Subscribe, wherever you get your podcasts, we release two episodes every month. And if you'd like to support the podcast, you can find links on the website and the show notes. Just go to ChemicalSensitivityPodcast.org. Thank you. 

 

Aaron Goodman  39:10

You know, there's been quite a lot of progress in terms of the recognition of some of the conditions that you mentioned. If we take Lyme disease, for example, if you look in the not too distant past, as I understand it, there was a lot of skepticism and skepticism and denialism by medical professionals whereas now, there's less of that, it's quite recognized. Does a situation or a case like that give us or give you any sense of optimism that people with MCS can potentially hope that in the future may hopefully not too far from now, the same sort of phenomenon could happen where we move from denialism skepticism to more of consensus among the medical profession that that this is a legitimate illness?

 

Don Want  40:10

I, I'm I haven't particularly followed Lyme, but to my way of looking at Lyme is, yes, it was this mystery illness that wasn't recognized and still isn't by a majority of the medic, the orthodox medical system, but its connection with spyera, Cades, Paralia, and so forth, that can actually be tested for if you've got the right, the right approach to it, you know, in other words, takes into account biofilm presence and all this sort of stuff. It's more definitive than what MCS is, still comes back to the fact that MCS is such a broad range of triggers and organs that are involved. And it's, you know, like Lyme with, with those, those testing pathways, a little bit more defined, and MCS, having these various tests that I talked about on Bellepom proposing. All those tests are all independent of each other. In other words, they don't make sense to a conventionally trained medical practitioner. So, you know, I see it's still a long way in the distance, some, its recognition, and I see it more recognized as part of environmental effects on health, rather than the self contained disease, because of essentially all of its overlaps with all those other conditions that I spoke of.

 

Aaron Goodman  41:55

Yeah, and it's sort of depressing for lack of a better word, perhaps, because MCS seems to be at the bottom of the barrel in terms of the level of recognition out of all of the ones that you mentioned, I mean, maybe, EHS, but more ME, CFS. You know, there's still, you know, level of denialism there, but seems that MCS is pretty low in in the bottom of the barrel, which is not great. But maybe as we move towards wrapping up, you know, we've talked about you've talked a lot about the obstacles and the challenges, a path forward, and a lot of a lot of people are fighting this fight in their own ways. But what do you think can be effective in terms of fighting for recognition?

 

Don Want  42:51

I see. Well, just before I do, I wanted to also touch on the recognition of allergies being being written off psychologically, the same way as MCS is, I'd like to touch on that before I leave. 

 

Aaron Goodman  43:12

Of course.

 

Don Want  43:13

But I'm just on your question, though, I see. The fight for this condition is as as I just mentioned, you know, like, more of a fight for environmental effects on health in general. And, you know, like, even in our own individual fight as a family over here, we, at one stage, we're better off saying to authorities, or doctors or the light that, you know, he's got a chemical sensitivity or allergy. As soon as I see MCS as being a, a word that pushes the alarm buttons for for many practitioners, because it's a direct term that virtually implies that industry products, the chemicals in various products are affecting our health. And so if we can get around that, by not actually pushing the MCS term, but rather environmental sensitivities or something to that effect, I see that we've got a better chance of being recognized.

 

Aaron Goodman  44:35

So you're proposing environmental sensitivities, which is a lot of little bit less in their face. Is that what I hear?

 

Don Want  44:46

Yeah, essentially, that's it on I'm not at you actually. Advocating for that term as such, but just to MCS has been around for decades now, and obviously, you know, we're not getting anywhere with MCS as such. But, you know, in my research here, you know, with all the overlapping effects, even on people without MCS, or one of these conditions, you know, chemicals are affecting everyone's health. And if we highlight that we've got a better chance of being respected than trying to fight and explain a relatively complicated condition to the average Joe Blow, especially a conventional medical practitioner. 

 

Aaron Goodman  45:41

Yeah. It's sort of taking like a wider approach. I wanted to see if you have any thoughts on the term Toxicant Induced Loss of Tolerance or TILT, which was comes from the Hoffman TILT program, and Dr. Claudia Miller and colleagues, what do you make of TILT?

 

Don Want  46:08

I think Claudia is, you know, invention of that name was along the the lines that I'm trying to say, should be taken. MCS should be taken, I still feel that it's a complicated term for the Average Joe Blow, though, you know, and it's, it's less confronting, than MCS is Multiple Chemical Sensitivity. So I do believe that's, that's in the same vein as what I'm advocating. Yeah.

 

Aaron Goodman  46:45

It's kind of I hear what you're saying, I have mixed feelings, because it sounds like in the context that you've outlined is very, really quite challenging. Right to, to hear it, and but it is there. But if we have to kind of, you know, walk on eggshells around it, you know, I'm sort of a firm believer in calling it out, calling it for what it is. But at the same time, you know, just last week, I had an experience in a medical, medical doctor's office where I was met with that denialism and that gaslighting when I used the term MCS, so I recognize that it does often lead to a push back. But I also feel it's important to say what it what it is, but it's not that environment, environmental sensitivities, isn't saying it. Your point, if I understand is that you're you're kind of advocating for a broader, more encompassing term. So we're not singled out. MCS people aren't on their own. So it's sort of that enmeshment and meshing. So it's sort of that if we say that if we recognize that we're connected with others, that we're all swimming in this chemical toxic soup, and we're all affected, then we have a better case better chance of fighting together, as opposed to if we are solitary in that battle. Is that how is that right? 

 

Don Want  48:20

That's right. Yeah, that's essentially it. As soon as you say MCS now, your account compartmentalised usually in the psychological category, you know, just just one thing, before we go, I just wanted to say that in my research, I did find quite an interesting aspect of allergies within the realm of placebo effects, the tendency for orthodoxy to attribute MCS, mostly to a psych, psychological process. And that stems from a number of studies that have been done on MCS, very similar to allergies, but it's worth considering allergies in the allergy realm. 

 

Don Want  49:12

This distinction between a biological and neurological reaction becomes a little blurred. Brain triggered allergy attacks would documented as far back as 1886, when a person with asthma viewed an artificial rose and suffered an allergic attack. And then later it was shown that immune system responses can also be conditioned, and that was in 1928. It means that if a person associates a dust mite allergy with a particular odor, and the same smell will trigger an immune reaction, even though no dust mite is present in the 1970s, the interaction between lien behavior the brain and the immune system became established in the field, which was then called psycho neuro neuro immunology. And since then researchers have found that placebo responses in patients with allergies are among the strongest observed in clinical studies and strong psychological factors are apparent in people with a vast array of allergic disorders. 

 

Don Want  50:30

These studies do not establish allergies as a purely psychological state, since biological processes are involved, even in the cases where no physical trigger is present. But it does suggest the immune system responds to certain cues and environments. So as with allergies, MCs suffer, suffer reactions can be very debilitating. As with allergies, this phenomenon should be viewed as the body's protective reaction to a perceived threat based on a prior on prior experience, and initiating immune system reactions. Many studies on MCS, which conventional medical system looks at and refers to totally miss this phenomenon in their conduct, and use placebo type reactions to assert an attribute or psychological response. I think that's very pertinent because there's nothing worse than those studies that come out on MCS sufferers. And, you know, write it off right off and perceived exposure or a real exposure, you know, perceived exposure as a placebo effect. In other words, well, it's all in their head. I just thought I'd add that because that's often overlooked. So if, if any of your listeners are ever confronted by a conventional practitioner, you know, citing such studies, it's very pertinent. There's many studies establishing such effects in allergies, and they they believe allergies, they believe allergic reactions.

 

Aaron Goodman  52:26

Don, thank you so much for taking time. And for all the incredible work you've done, and for sharing your knowledge with us. I really appreciate it. Thank you so much.

 

Don Want  52:40

Okay, thanks very much, Aaron, pleasure.

 

Aaron Goodman  52:43

That brings us to the end of this episode of the Chemical Sensitivity Podcast. Thank you very much to Don Want Ph.D for speaking with me. The podcast is produced by me Aaron Goodman and Raynee Novak. We release new episodes twice a month. Please subscribe wherever you get your podcasts. If you'd like the podcast and want to support it, please find links on the website and in the show notes. Your help allows us to continue making the podcast and create greater awareness about MCS. Thank you very much. I really appreciate it. 

 

Aaron Goodman  53:15

Find us on social media. Just search for the Chemical Sensitivity Podcast or podcasting MCS. Please leave your comments with anything you hear and share the podcast with others. If you'd like to read transcripts of the podcast, you can go to the website ChemicalSensitivityPodcast.org. Choose the episode you want and click on transcript. Or you can find the Chemical Sensitivity Podcast on YouTube and read captions in any language you like. Leave a review on Apple podcasts. It's a great way to help others learn about the podcast. And if someone you'd like to hear interviewed on the podcast or a topic you'd like us to explore, just let us know. Email info@chemicalsensitivitypodcast.org and thanks for listening.

Introduction
Background
Medical Staff
Changing Environment
MCS in Australia
Sons with MCS
Modifying Environment
Path to Diagnosis
Available Testing
Medical Watchlists
Proof of Illness
Environmental Causation
Overlaps
Compartmentalize
Recognition
Stop Button Issue
Environmental Sensitivities
TILT
Psychological Category
Biological Processes
Conclusion