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CIRS - What Is It & Where Can I Get Some Advice?

On today's livestream we’ll be discussing all things CIRS. What is it, where did it come from, who does it effect and how do you know it might be the explanation you’ve been searching for?

Dr. Jones:
Hello, and welcome to today's live stream. My name's Doctor Cameron Jones and I'm really looking forward to today's show because we're going to be talking about Chronic Inflammatory Response Syndrome, the acronym CIRS. Yes, it's been used a lot, and there's a number of reasons for this. And we're going to be going over some of the fundamental research about CIRS. And I'm putting all of this in the show notes because of more importance today, I have a very special guest that I interviewed yesterday. And she's from the Facebook group, Biotoxin CIRS Support Group. And we're going to be hearing from her pretty much as the dominant focus of today's livestream.

Dr. Jones:
And before we begin though, Chronic Inflammatory Response Syndrome, essentially this is a newer term used to describe a constellation of symptoms, adverse health symptoms which are connected with exposure to mould toxins, other toxins, and environmental challenges, which cause an adverse immune reaction in the individual. And I want to highlight a couple of the key papers. So, the key papers, I've put again in the show notes. And they're focusing on sick building syndrome and exposure to water damaged buildings. And this is a paper from 2006 by Doctor Ritchie Shoemaker. And in that work, he introduced some of the more medically focused approaches that medical practitioners and clinicians can do with their patients who are complaining about exposure to water damaged buildings. And he talks about cholestyramine as a binder for a lot of these toxins.

Dr. Jones:
And some of the fundamental work that he used is something called VCS or Visual Contrast Sensitivity deficits. And we've talked about this on the livestream before, but basically, Dr. Shoemaker was able to show that those patients who were given cholestyramine and then had their VCS tests looked at, they showed improvement after the binder was introduced.

Dr. Jones:
Now, when they were re-exposed to the water damaged building, amazingly, their VCS results declined or got worse. And basically, he was able to show and published in the research literature, that this was a pro-inflammatory cytokine response. And that's back in 2006.

Dr. Jones:
If we move forward to 2013, we can look at again some other very important research, look at VIP. And again, these are very important papers that you should bring to the attention of your healthcare provider because they are very clinician focused. I'm a scientist, so this is the medical literature which you need to be aware of because if you are suffering potential CIRS like symptoms, you may need to discuss this with your healthcare practitioner or doctor, and these are the papers that you want them to be aware of.

Dr. Jones:
If we move forward to 2014 to see what's in the literature, we again find that Dr. Shoemaker published this excellent paper focusing on brain abnormalities. And why we're focusing on brain abnormalities is that the VCS test is attempting to quantitatively measure one aspect of neurological deficits, which are the result of exposure to water damaged buildings and other toxins in the environment. And he was able to show that there are volumetric abnormalities in the brain. And in fact, the exposure to these toxins, biotoxins causes structural brain injury.

Dr. Jones:
Now, this is a really significant finding and is of quite some concern, or should be of concern to anyone who is grappling or dealing with water damaged building interiors, be that at their home, apartment, or even in the workplace. Now, we can move forward to 2016 and we can find other really important literature as well talking about inhalational Alzheimer's. Again, making the connection that there is an unrecognized constellation of very significant medical problems which appear connected to inhalation of toxins. And so, again, this is the fundamental research which is in the peer reviewed literature focusing on Chronic Inflammatory Response Syndrome.

Dr. Jones:
Now, I now want to move on to what we are talking about today, which is the Biotoxin CIRS Support Group. And you can find this on Facebook at Biotoxin CIRS Support Group. A couple of weeks ago, I did another livestream focusing on a range of different Facebook groups that are out there. I think Facebook groups are really important. And we're going to be hearing from one of the admins of this group. And it was my pleasure to interview her because at the end of the day, there are people behind these Facebook groups. The whole purpose of becoming involved in the Facebook group is in a sense to share information and be exposed to cutting edge or leading edge thinking and contemporary thinking from other individuals who are potentially going through the same types of stressors that you might be going through if you're dealing with water damage.

Facebook Livestream Video:

Dr. Jones:
So, I'm very pleased to present this interview and we're going to get straight on with it now. So, welcome Anna.

Anna:
Hi, Cameron.

Dr. Jones:
How are you going this morning?

Anna:
Yeah, not too bad. And thank you for the opportunity to actually talk about this subject matter because I think it's not discussed enough in this country and it's certainly not, I guess respected for the problem that it is in our healthcare system.

Dr. Jones:
Yeah, sure. Well, look, I wanted to bring you on because you set up the Biotoxin CIRS Support Group. Could you tell me a little bit about who this group is for?

Anna:
Well, look, I think it's fundamentally for people who have either been diagnosed or those who are suspecting that this might be sort of the underlying medical issue that they have and they're just searching for information. And probably also some validity or some validation that they're not crazy, that this is real. And we're not medical practitioners, although we're very fortunate that we have some world class practitioners and scientists in the group. They're not there to diagnose people. I think what they're there is to sort of help guide the conversations.

Anna:
And one of the things that I really wanted with this group, as opposed to other groups that are out there in Facebook, is to make it more of a think tank, you know? To ask bigger questions, not to be sort of too narrow in the focus and shut people down if they were going off topic because you never quite know with this particular illness where the connections actually are. So, it's just having a broader conversation and trying to sort of enlighten and inform.

Dr. Jones:
Anna, that's a really great answer, actually. And you touched on a couple of points that I wanted to talk about as well about Facebook groups because I certainly think that Facebook groups and all forms of social networking really allow us to ... Really, it's a type of global communication. So, it's really important that we use these channels to connect and find other like-minded people. And also, work out ... In a sense, one of the criticisms of groups is that they act like echo chambers. But what you're saying is that your particular group is certainly being mindful of the fact that it needs to be inclusive and take the views of lots of different people into consideration. Would you say that's correct?

Anna:
Absolutely, you know? I want to think completely outside of the box because I think initially when we were diagnosed, we were just simply focusing on mould as being an underlying trigger. But biotoxins obviously encompass a whole range of toxins. And I think there seems to be now this sort of connectedness to other diseases. And I think we didn't want to just be mould. We wanted to look at that bigger picture and just ask lots of questions. And sometimes it's a little bit left of center, it's not completely on the mark. And we're not there, as I said, to actually diagnose people. But just to start a bigger conversation than what we currently have at all in this country. And it isn't just limited to Australia. Our members are actually finding us from all over the world.

Dr. Jones:
Yeah, that's really interesting. Listen, before we go any further, I think we should probably define what CIRS is. Could you tell me what in your view it means?

Anna:
Yeah, and again, I'm not a medical practitioner. So, a lot of what I communicate, I guess is in layman's terms. But I've obviously done a lot of reading over the years and tried to educate and empower myself to self-advocate for my own health. But CIRS is Chronic Inflammatory Response Syndrome. And what it is triggered by is a series of defective gene alleles that up to 25% of the population has. And most people don't know that they have these defective genes. And it's basically waiting to be triggered by some kind of toxic, biotoxic exposure. And the way that I've had it explained to me is that this subset of the population, and 25% is a huge number, are basically like a bathtub without a plug and weight.

Anna:
So, the toxins that they come into contact with are slowly dripping in and filling in that bathtub. But often what happens is that they will get some sort of chronic exposure, potentially and usually to a mould environment. And it's like that bathtub is suddenly flooded by a tsunami. And what happens is that then switches on this cytokine response. And the cytokines create inflammation in the body. And inflammation is then the trigger point potentially for these other diseases.

Anna:
I mean, if you actually read the medical literature for a diagnosed condition, even something like ADHD, they're suspecting now that it's actually the cytokines responding and triggering the brain. And it's the same sort of pattern. I call it the same circle, just different label when you're talking about something like CIRS.

Dr. Jones:
That's a really fantastic definition and I really like that too because certainly as a scientist, I go straight for the literature. And often when you type into databases, such as PubMed for CIRS, you'll get the landmark hallmark papers by Ritchie Shoemaker and James Ryan and Dennis House and even Dale Bredesen on inhalational Alzheimer's and the correlation with inflammation and brain disregulation. So, I'm fascinated by that. But obviously I can find other uses of CIRS as an acronym relating to things that are outside of toxin mediated symptomology. So, I think that it's really important that your group is certainly looking at the connection between what is essentially a new term to define very real phenomena.

Anna:
Yeah, absolutely. And I think what happens is that often a CIRS patient will go to a sort of standard general practitioner and they will get diagnosed with certain conditions and that, that CIRS flag isn't necessarily being investigated at all because they're just completely unaware of it, let alone the fact that this could be the ongoing trigger. And often they'll have multiple symptomology. And there's sort of this confusion about where it comes from.

Anna:
It might be that several members in a family might have a range of different symptoms, but they might not be the same. So, there's a big question about is there a connection with the gene, with the type of toxin? And then that is actually reflective in the symptomology. So, I think there's a lot of investigation still to be done. I think that epidemiologists and people need to start looking at what those patterns are. But despite the fact that we've had this Australian Federal Government Biotoxin Inquiry which was convened and finalized at the end of last year, there still seems to be this complete lack of, I think firstly awareness in the general practitioner community. And I also think that there's an unwillingness to understand or to believe in the fact that this is a real science, it has been quantified in multiple ways.

Anna:
The testing that is used to actually diagnose CIRS is also quantifiable. But one of the biggest things that came out of the inquiry in my mind that I kind of resonated with was that the patients who have CIRS are just not being believed. They're not being believed by their family, they're not being believed by mainstream medical practitioners. They're being told that they're unwell, probably that they're a bit crazy, that their symptomology has nothing to do with the fact that they know even potentially that they've been living in a contaminated environment, particularly with mould. And somehow their medical symptoms are not being correlated with CIRS or with the fact that they've had this biotoxin exposure.

Dr. Jones:
I think that that is ... You've raised so many interesting points here. I guess I should touch on the fact that it was one year ago since the Inquiry Into Biotoxin Related Illness in Australia released their final report findings. I think that it's important to mention that in a year, a lot of people have been grappling with trying to come to terms with what their odd symptoms might be. I think that it's important that the submissions made to the inquiry were put out in the main into the public domain, so they are retrievable. That means that at least people will eventually find these resources online.

Dr. Jones:
I think that the next point that you mentioned is, I've touched on briefly, when I go to PubMed, for example, overwhelmingly, this is research which is published from universities. And usually, that is funded research. So, with biotoxin related illnesses, whilst there may be a push towards starting to fund research groups, if the universities are not supporting this, well it's not going to end up in the literature. That doesn't necessarily mean that it's not true and valid and that there isn't some really fantastic work to be done from a fundamental and an applied science point of view like you say. The epidemiology is absolutely fundamental because people like myself are approaching biotoxin illness from water damaged buildings have a very different perspective and narrative than someone who is actually the person occupying that building for often many years and then having adverse symptoms.

Dr. Jones:
So, our perspective positions are really important in terms of how we view illness. And biotoxin related illness is just a new way of defining something that is triggering problems. And now you're talking about the underlying gene impacts. And I think that that's really important. One thing I wanted to say to you is what motivated you to set this group up in the first place?

Anna:
I think frustration, frustration that somehow I was being labeled as crazy and that despite the fact that there was medical test results that proved otherwise and knowing that we were or had been in a heavily contaminated building, and somehow those parallels were validated by anybody that I was seeking answers for to try and get well.

Anna:
And I was quite happy that it was initially a small little group and it was just sort of people who could talk about it in a sort of open way and feel respected and also supported.

Dr. Jones:
Well, that's really important. I looked last night, and you have 834 members, which is no small feat considering that Facebook groups are one of the only ways that you can actually reach people because organic reach, as we all know, has been reduced in most of the social networks. So, it's really important to look at joining and contributing to groups in order to stay informed because this issue, as I mentioned at the beginning about global communication, certainly all of us over the last decade have been the beneficiaries from the fact that the social networks provide free information.

Dr. Jones:
But individuals such as yourself and people who contribute actively to your group, you have a massive role to play in curatorship and in a sense this concept of citizen science or how a collective voice can bring a lens to this issue of illness and the environment. And then, more practically, what do you do about it? Because from my perspective, as I said, my role in a sense stops after I've collected the data or written the expert reports. And then it's up to the insurers, the home owners, and the solicitors to grapple with what usually is who pays for the cleanup or remediation?

Dr. Jones:
But that is really different to how do you get yourself well? How do you feel happy again? How do you move forward? How do you stop any of these depressive symptoms which have been spearheaded by your environment? So, I think-

Anna:
Yeah, I think there's a couple of important things there. And I think one is that often patients become so unwell that there's a high degree of social isolation. And this gives them the opportunity to feel connected to people who are going through the same kinds of issues. So, that validation is really important.

Dr. Jones:
I love that.

Anna:
But on the reverse side, there can come with that sometimes people become very fixated on that illness and the cause. And we talk about things like even sort of neural brain retraining, that we can kind of get stuck in a neural loop and fixated by what has been, for a lot of people, a great physical trauma, a great mental trauma, and often a great financial trauma in terms of having to flee those properties and then recommence their lives. And not having that sense of safety, you know? Knowing that you're already unwell, trying to find a place that you know you're going to continue to or hopefully get better in and know that it's not actually contaminated. And you would know that that's actually very difficult because the thing is that the mould itself is kind of a visual cue. But often that mould can be hidden or it might have been cleaned up. And cleaned up inappropriately with bleach and other products that aren't actually going to kill the mould.

Anna:
And then, the mould itself being this factory has already released this sort of invisible toxic cocktail of endotoxins, mycotoxins, things that are invisible to the naked eye and are actually contaminating all the surfaces in that environment. So, the person who has chronic inflammatory response or has the defective gene can still go into that environment and become incredibly unwell because they're getting this sort of physical assault by these toxins on their body. And they can't even see it. And they're wondering why they're feeling like crap. And it might be in their work environment, in their air-conditioning system. They might have had a water spill on the carpets. Most people would be ignorant of the fact that if it's been sitting around for a while, that after 48-72 hours, it starts producing that cocktail if it isn't actually cleaned up properly. And there's a huge difference between cleaning it up and what insurers will do in terms of renovating a property versus actual remediation.

Anna:
So, if people have had storm damage and they're filing insurance claims, often what will happen is the property will sit around wet and those mould spores will be allowed to grow. The whole property has become contaminated. They might come in and fix the part that they see has the water damage, not realizing that the entire property has this cross-contamination, you know? And we have somebody like Lucy Wicks to thank. She's a government MP. And it was her going through her own personal journey of their house being damaged through a storm, the insurers coming in, cleaning it up, her family moving back in, and them all becoming quite unwell. And her sort of not even completely understanding what was happening because her house looked new, you know? It had been fixed.

Dr. Jones:
I agree with you.

Anna:
And unbeknown to them that there was this sort of cocktail of toxicity left behind. And so, she was pretty instrumental, along with some other groups here in Australia and other practitioners in getting that inquiry launched. And I think there's a very important ... A couple of different people who I'd like to mention who I think have contributed immensely.

Dr. Jones:
Please do.

Anna:
There's a group here or a website here in Australia called toxicmould.org. It's actually run by Caleb Rudd. And Caleb has been instrumental in opening that conversation, but also with a high degree of authenticity in making sure that the scientific literature is part of that website so that it's there for everybody to actually access. So, he's kind of curating, collating that information together in a manner that is both simplified for people who are quite new to this, but also giving the weight and the validation with that medical literature as well.

Anna:
And I think Doctor Sandeep Gupta has been amazing in this country in getting the diagnosis out there, which is now being picked up by other practitioners here in this country and around the world. And Doctor Ritchie Shoemaker. I mean, he was the one that really put his neck on the line in the US and started drawing parallels to an outbreak of Chronic Fatigue Syndrome in the 80s. I think it was in 1984 in Truckee, Nevada [with Eric Johnson]. And what tends to happen, I think with researchers is they sort of ... Some of them will grasp onto the fact that it's this and it's only this. And they're not necessarily looking at those connections either.

Anna:
So, Ritchie was saying way back then, it's not just chronic fatigue. It's actually the toxins that were in the waterways in that area that were creating this toxicity in this subset of people, who were then showing symptomology of chronic fatigue. We've got the contamination of the Murray River Darling here in Australia, and then we've got this cluster of people with motor neuron disease suddenly appearing. Surely that's not just a coincidence? They're the sorts of things that I think these epidemiologists need to be looking at is what are the toxins? What are the genes?

Anna:
And the thing is, just in recent research that I've been doing, we talk about the fact that to try and simplify the diagnosis, and often people will go to their GP and as I said, not necessarily give it any merit. But if they go online and do what's called a visual contrast sensitivity test, it's an online eye test-

Dr. Jones:
VCS testing.

Anna:
Yeah, the VCS will give them an immediate clue if they're affected by biotoxins. So, if they fail that test, they know that they have biotoxins in their system. And it's not possible to get a false fail. So, if they fail, they fail. But up to 10% can get a false negative, sorry, false positive because they actually have very acute vision, but they might still have the symptomology.

Dr. Jones:
Vision deficits, you mean?

Anna:
Yeah.

Dr. Jones:
Or some other-

 

Anna:
Yeah, well their vision is so acute that the contrast that other people would fail on, they're still passing. And that test is actually taught to every single optometrist world wide. Now, they don't use it as a standard diagnostic in their practices. But in talking to my optometrist, she went away and read her medical literature and said to me it was such an important and powerful tool that she felt that it should be included in every single eye exam in this country.

Dr. Jones:
Well, look, I agree.

Anna:
Because if that came up as a trigger, then that was a red flag for the patient to know what the underlying trigger might be. And then the HLA blood test, the HLACRQ. You know, the interesting thing about that is it's a genetic marker and certain genes within the HLA results then related to certain, I call them the Kryptonite for these 25%. So, some might be mould, some might be low MSH, some might be multi-susceptible to all biotoxins.

Anna:
But that HLA test is actually what's used as a diagnostic ... Well, not a diagnostic, but I guess if somebody's looking to be an organ or bone marrow transplant donor, that's actually the test that they use to test for the compatibility for the recipient. So, it's a pretty powerful test. And we're saying, "Look, this is the one that actually tells you if you have one of these biotoxin genes." The thing is that that gene is only going to be triggered through exposure. So, you've not necessarily got the gene and going to be ill. And what I'm trying to do is get that information out there so that if people, A, know that they've got that susceptibility and what it is is their Kryptonite, they know what to avoid literally like it's the plague.

Anna:
If they are already showing symptoms and they've failed the visual contrast sensitivity test and then the HLA says to them, "You actually have this genetic susceptibility," then they can start investigating through practitioners who are aware of this and actually see if this is the underlying trigger because back to the analogy of being a bathtub without a plug and weight, if you can create a conduit through things like binding medications and actually remove some of those toxins that are firing continually these cytokines, there's a chance that that might reduce their symptomology.

Anna:
Is there a chance that it might actually even reverse the disease that they've been diagnosed with? And what's interesting is often when I try and advocate and talk to people about my experience and what we're seeing in our CIRS community is that if you talk to somebody who has some of these other illnesses, often I think that they feel like you're trying to invalidate that illness. And that's not what is being suggested at all. What we're saying is that it's still very real, just like CIRS is for us. But those symptoms potentially could be reduced or reversed if they understand these cytokines and the fact that they're constantly triggering it. And the only way to do that is to start down that path.

Anna:
I think the visual contrast sensitivity test is either free or the one on the Surviving Mould website's about $20 Australian, and well worth spending that, considering what they're probably spending on all of their other medical investigations and medical care, and just see. Rule it in, rule it out, that's all I say. It's a pretty simple process to understand if you are one of those genetically susceptible people.

Anna:
And you know, I kind of say, well who might benefit from that further investigation? And it's pretty broad. And I say, "Look, if you've got children with learning or behavioral issues, anyone potentially with mental health issues, anyone with autoimmune issues, anyone with neurological issues, just start with that visual contrast sensitivity eye test." Spend the $20.

Dr. Jones:
Anna, you have raised so many points regarding visual contrast sensitivity testing. In fact, I did a livestream maybe two or three months ago on VCS testing and you're 100% correct. It is a very interesting tool for attempting to quantify dysfunction in the visual system as it relates to the experience of illness or disease or a diagnosed pathology. So, you're 100% right there.

Dr. Jones:
I might just summarize a few things you said. You said that the ... You wanted to shout out to Caleb Rudd. I completely agree with regard to his work with the website and also other Facebook groups [like Toxic Mould Support Australia]. It's really, really important that there are voices, especially in Australia who stand up and take a position on this because illness can happen to anyone. It's very unexpected. I'm working with someone now who was a very strong mould denier when he was involved with a property that I was involved with maybe a year and a half ago. He rang me up a week and a half ago completely beside himself. He is a builder. He has worked for his entire life as a builder. His son's property was significantly flooded earlier this year. He's very, very upset and agitated regarding the insurance driven mould remediation or lack thereof that's occurred at his son's property.

Dr. Jones:
And I might add that this individual was a vehement mould denier with regard to another person's property. And yet, has turned around, done an about face, is now highly concerned because his son, his adult son is showing a whole lot of problems. And certainly with his spore traps that I analyzed a couple of days ago were showing levels that were just astronomical. And I think this issue is that on the one hand, people can be stakeholders and take a position that mould and other types of toxins aren't causing problems. But when it happens to them or a member of their family or someone they love, often times people will change their opinion, change their mind.

Dr. Jones:
And I think the work that you're doing and that other clinicians, integrated medical practitioners like Doctor Gupta are really absolutely fundamental and very, very important. There's certainly a limit on what clinicians are able to do in terms of self promotion. And so, it really is up to citizens like yourself and myself and others to champion their work and make sure that there is a spotlight shined on it, and also that this issue of confirmation bias and echo chambers, all of this can be discussed, so that you can actually get to what we all want, which is the truth and at least evidence that supports something logical that can be understood and tends to make sense and resonates with you so you can move forward, make some decisions and move forward to better health if you're not having good health at the moment. I wanted to ask you one thing, what have you learned from your group that you weren't expecting?

Anna:
I think probably what I've learnt more from the other groups was how single focused they might be in many ways, how restrictive and also how they would sort of potentially shut down certain conversations. And the admins in our group have a philosophy that even if something isn't technically correct, we keep that information up there and we extend the thread of that conversation so that people can make up their own minds and they can see the pros and the cons, because even if something isn't correct, that person might stumble across it on the internet and not understand a collective interpretation or assessment of it. And I think that there's a great power and value in keeping all of the information up there, you know? The pros and the cons.

Anna:
And just, as I said, really having a very broad way of thinking about it and seeing what those connections area. And just asking questions because you just never know when the penny will drop for an individual person. You know, I had a family member who had fibromyalgia, was very unwell, unable to get out of bed, two children diagnosed with another condition. And I kept saying to her, "Is there any chance you've got a water leak in your house?" And she kept saying no. And she thought that I was crazy. And then when they actually discovered that their water purifier under their kitchen sink had been leaking into the slab of their house for years potentially, and that this was sort of this toxic underlying trigger in her environment, it kind of made sense.

Anna:
And often with people, I guess they need to be ready to investigate some of these things. And as I said, when you, with a great amount of love and respect try to lead people that you care about to the information for them to digest it and assess if that's right for them, often there's a huge resistance because I think that they feel like you're sort of invalidating their own illness, and that's not what we're trying to do at all. It's just saying, "Look, here's another piece of the puzzle. Is this something that might be useful to you and your practitioners? Digest it, have a think about it."

Anna:
I mean, there are links now to cytokines and environmental impact in things like ADHD, Autism Spectrum Disorder, anxiety, depression, brain fog, dementia, Alzheimer's, diabetes, Hashimoto's, Lupus, fibromyalgia, you know? So, the evidence is growing. I'm not here to say that they're all the right answers for everybody that has any of those ailments. I would love to just be able to raise a red flag and say, "Look, just investigate it, just see," because if that's the key to unlocking some sort of better health in removing those toxins from your body because your body has zero ability to remove those toxins of its own accord because of a genetic defect, then hopefully it will help some people.

Anna:
And I think what's interesting is we obviously have things like the BRCA breast gene, which is very well respected in this country as being a valid diagnosis. And so, you might have a family member who's already had breast cancer and then another family member who will go and do that genetic testing and be at risk. So, they may take quite drastic action to have surgery to prevent actually getting breast cancer. But when we talk about the fact that this 25% have the genetic defects that are at risk of being triggered by these biotoxin exposures, and in particular when you think about the amount of mould that's out there and the kind of building materials that we're using and the amount of modern day appliances that we're putting into buildings, like air-conditioning systems, dishwashers, plumbed in refrigerators, water filtration systems that weren't around a generation ago, we're increasing the risk of water ingress into buildings.

Dr. Jones:
Listen, wow, you've covered so many points here. I guess just a brief summary of what you've said. I completely agree that you probably do learn a great deal from other news groups and things that you want to change and do a little bit differently. I think it is important to, as a moderator, to certainly screen to some extent what's coming in, but to certainly leave it up, exactly like an academic paper would, once it's peer reviewed, it's open to scrutiny. If it passes peer review, well then it's open to further scrutiny and research development by other authors.

Dr. Jones:
This issue of news groups now and the debate surrounding sort of the identity politics that has formed in a lot of news groups is certainly concerning because as citizen scientists and practitioners and people seeking answers, it's really important that you can confidently move between different groups and information resources because at the end of the day, it's all about being proactive in accessing information, participating in debate, reading debates, forming opinions, because effectively, that's the whole point and value of a peer group. Look, I'd like to move on-

Anna:
And then I was going to say that-

Dr. Jones:
 

Yeah, okay.

Anna:
Sorry, those groups are still incredibly valuable. And if they have a particular focus, I'm not denigrating that at all. I think I just had a much broader inquiring mind about where I could see all this leading and wanted to form a group that had that approach. So, there are plenty of very valuable groups out there that will still be very supportive around specific focuses. So, yeah, I just want to be really clear about that.

Dr. Jones:
Yeah, sure. Well, look, that's the beauty of the internet, so there is a place for everyone. And I think that that's fantastic, and many places as well. I've got to ask you a ... moving towards the end of this: if you had a magic Facebook power and you could reach one or two or three million people with your Biotoxin CIRS Support Group, what would you want to say?

Anna:
There are a whole lot of very unwell people out there and that this is potentially the underlying trigger for those diseases. And that if I could unilaterally get all of them to do the visual contrast sensitivity test, and also then if it's positive, to check their genes, not only would they potentially be on a path to better health for themselves because they're understanding that underlying trigger, but they would also be able to protect their immediate and extended family members. By understanding those genes and what their risk factor is, that they would know what to avoid, you know? And you and I know that it's very hard to avoid mould entirely, but they would understand what that risk is to them, that it literally would be like picking up Kryptonite and that they would have to respond differently to it and treat it with ... I don't want to say respect because it's hard when this is a thing that's actually making you ill, but truly understand the negative power that it potentially has.

Anna:
And just also briefly, I think inaction, apathy, and ignorance are sort of what's underlying the whole premise of mould and the seriousness of it, the chronic inflammatory response. And we have a real estate industry that is very ignorant and wants to remain so about the harm. And the insurance industry, I think that they're kind of onto it, but they're potentially trying to sort of avoid it and the amount of money that it would cost to actually make buildings safe again. And when up to 70% of buildings potentially could be water damaged, that's a lot of insurance risk and exposure. It's also a huge-

Dr. Jones:
I love your answer.

Anna:
... risk in the general population. Those 25% go in and living in a building that can make them very unwell.

Dr. Jones:
Beautiful. So, listen, that magic ad that metaphorically is going to appear on Facebook is going to say, "Please don't be inactive, stop being apathetic. Don't be ignorant about evidence. Consider a VCS test, consider genetic testing. And consult a wide range of different healthcare providers. Talk to your integrative medicine practitioner or your doctor of choice and join a news group or a Facebook group." Where can people actually find your Facebook group?

Anna:
Well, like you said, it was the Biotoxin CIRS Support Group, so it's just on Facebook. So, if they search us or you pop up a link or something.

Dr. Jones:
I will.

Anna:
But just type in Biotoxin CRS Support and they'll find us.

Dr. Jones:
Fantastic. Listen, I am so appreciative of what you've covered today, you've really explained this very articulately and with a good degree of understanding and first person perspective. And I'm sure you're going to influence a lot of people and encourage them to take some action in their own lives. And go and find the information, form some opinions, and make some change in their lives.

Anna:
Yeah.

Dr. Jones:
Thank you very much for today.

Anna:
You're welcome.

Dr. Jones:
Is there anything else you wanted to cover as a last 30 seconds?

Anna:
Excuse me. Pardon me, there's a website that I refer people to because often they'll say, "How do I help other people that love me and support me understand what we're going through?" And I refer them to a very simple little website called Biotoxinhelp.com. It's a great way of sort of not presenting a whole lot of information and being overwhelming. I also think that we're not here to force people into any of this. I mean, because we've sort of been down this path, I think we all want to sort of raise that flag. People are on their own journey, and they're going to let in that information as they need to. But go and have a look at the submissions on the Australian Government Website for the Biotoxin Inquiry. Read some of the literature by Doctor Mary Ackerley who is a US neuropsychiatrist. And she talks a lot about brain on fire. You know, this is real, these connections are real.

Anna:
So, there are a lot of people who are suffering. And if we could somehow offer a blanket of comfort and open a door for them to actually potentially just investigate what that underlying trigger is, it might go a long way. But it is very difficult when we're in a society that perceives that what we are talking about is rubbish and that we're all mentally unbalanced in some capacity, even though we have all that research, all of our own medical results indicating otherwise. So, that apathy and that ignorance just has to change.

Dr. Jones:
I love it. I think you've raised so many wonderful points.

Anna:
Thank you.

Dr. Jones:
Thank you very much for your ... really your life experience and your wisdom today. Bye for now.

Anna:
Thank you, you're welcome. Okay, bye.

Dr. Jones:
Okay. Well, that was fascinating. Thank you very much for that interview. I hope it has been informative. I hope you have learnt something about CIRS, Chronic Inflammatory Response Syndrome. Some of the first person experience that has been discussed today, I think that the take home message here is that there are supportive groups out there that really you can join and you can get some very high quality information. And I think that that is something that anyone who is dealing with Chronic Inflammatory Response Syndrome or dealing with toxins or biotoxins or mycotoxins or a whole range of different triggers that could be responsible for adverse health symptoms really can join any of these Facebook groups and come into contact with some really useful information.

Dr. Jones:
Anyway, I have enjoyed presenting this today. As usual, I would encourage you to like, comment, and share on this post. We'll be uploading this to YouTube later, but it will be here with links underneath this video on Facebook. And thank you very much. And next week will be an interesting livestream because I'm participating in a legal case regarding a water damaged building. So, somehow we are going to present a livestream on Thursday. But hopefully not from the steps of the courthouse. In any case, have a great week, and I'll talk to you next week. Bye for now.

Dr. Cameron L. Jones

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