CANADALAND
Brain Disease ‘Mystery’ Still Unsolved, Scientists Say
“All I will say is that my scientific opinion is that there is something real going on in New Brunswick that absolutely cannot be explained by the bias or personal agenda of an individual neurologist.” Those are the words of Dr. Michael Coulthart, a microbiologist employed by our federal government, specifically by Public Health Canada. He’s talking about the mysterious neurological disease that is striking down people in New Brunswick. We were not supposed to read his words. They are from a leaked email obtained by Canadaland, first published by the newspaper The Guardian.
Then there was another leaked email. Doctor Samuel Weiss, a neuroscientist and the scientific director of the Canadian Institutes of Health Research. In his leaked email, he states, “I felt incredibly optimistic that an all out government effort to unravel the mystery was in the cards. However, in short order, the scientific effort was shut down at the request of the governments.”
It’s nine years since the first case was documented. The numbers, by some reports, have grown to over 300 suspected cases. And we still have no answers. Our reporters, Cherise Sucheran and Sarah Lawrynuik present the latest instalment in our ongoing investigation.
Host: Jesse Brown
Credits: Cherise Sucheran and Sarah Lawrynuik (Reporters)
Caleb Thompson (Audio Editor), Max Collins (Production Manager), Bruce Thorson (Senior Producer), Karyn Pugliese (Editor-in-Chief)
Additional music by Audio Network
Further reading:
- Second Canadian Scientists Alleges Brain Illness Investigation was Shut Down
- Top Canadian Scientist Alleges in Leaked Emails He Was Barred From Studying Mystery brain Illness
- Government Officials Mislead the Public About the “Mysterious” New Brunswick Neurological Disease, and We Have the Documents to Prove it
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- Duration:
- 31m
- Broadcast on:
- 01 Jul 2024
- Audio Format:
- mp3
This episode is brought to you by Squarespace. Just do it. Just start making a Squarespace website. It's totally free. And you can use one of their templates and plug in your own information. And you start to build a beautiful website. And then, when you're ready to launch, go to squarespace.com/CanadaLand. Use the code CanadaLand and you'll save 10% off of your first purchase of a website or domain. You can see if you like your website before you pay for your website and get a great discount on it. Once again, it's squarespace.com/CanadaLand for a free trial and to get 10% off when you're ready to launch using the code CanadaLand. All I will say is that my scientific opinion is that there is something real going on in New Brunswick that absolutely cannot be explained by the bias or personal agenda of an individual neurologist. Those are the words of a scientist, Dr. Michael Kultart, who is a microbiologist employed by our federal government. Specifically, he works for the public health agency of Canada. And we were not supposed to read those words. They are from a leaked email obtained by CanadaLand, which was first published by the newspaper, The Guardian. So what was he talking about there? There is something real going on in New Brunswick that absolutely cannot be explained by the bias or personal agenda of an individual neurologist. The individual neurologist who he is talking about but does not name is almost certainly Dr. Alier Marrero. You heard Dr. Marrero a year ago on this show. Our reporter, Sarah Larnuck, spoke to him. He is a Monkton neurologist who risked his job by telling CanadaLand about a growing number of patients who are suffering from mysterious brain symptoms. Do you remember the story? The first case is traced back to 2015, but it was not publicly known until 2020 when the government of New Brunswick revealed that 30 and later 48 people were suffering from debilitating symptoms that nobody could explain. People lost neurological function. People lost their ability to speak. Some people lost their lives. I can't read. I can't move. I could not figure out how to make your letter Q like it was like another language. I feel like my memory is so bad. I can have a conversation with someone and forget it five minutes later. She couldn't talk, couldn't walk, couldn't eat. She passed away one day before Mother's Day. The provincial government was on it. Their scientists were going to work with federal scientists to figure out what was causing this. Nobody knew. Was it a pre-on disease? Was it somehow linked to shellfish? Might it have to do with blue-green algae? We were promised that a super team of scientists, both federal and provincial, would leave no stone unturned. And then, a year later, they announced that there was nothing to see here, nothing to look for. The cases, they said, had been misdiagnosed. There was no mistrialness. The Oversight Committee has unanimously agreed that these 48 people should never have been identified as having a neurological syndrome of unknown cause, and that based on the evidence reviewed, no such syndrome exists. That final report marked the end of the province's investigation in February 2022. But Dr. Alia Morero disagreed. He spoke to Canada Land to say that the number of people he was seeing who were suffering from neurodegenerative symptoms was no longer 48, but had, in fact, quadrupled to more than 200. I do see the number of younger cases increasing, and I have reported that to public health as well. Even after those revelations, the provincial government in New Brunswick had maintained that there is no problem. They even tried to discredit Morero, and they removed him from the clinic that they had established. The federal government sent a small team of epidemiologists last fall, but leaked emails from federal researchers' show. Morero is not standing alone. That first email that I read to you was from, as I said, Dr. Michael Kultart, a microbiologist and head of a national surveillance system looking for pre-on diseases. He said that in his scientific opinion, there is still something going on in New Brunswick, and no one knows what is causing it. Kultart's voice is now echoed more recently by a third expert, a neuroscientist, who holds the position of scientific director of the Canadian Institutes of Health Research, Dr. Samuel Weiss. In another leaked email, he seems to be in complete opposition to what the government of New Brunswick has been telling the public. I'll read from it. I felt incredibly optimistic that an all-of-government effort to unravel the mystery was in the cards. However, in short order, the scientific effort was shut down at the request of the governments. So it's now been four years since we first learned about this, and we still have no answers. We have leaked emails from federally employed scientists telling us that there is something going on here, but no answers from the federal government. Surely, somebody needs to be held accountable for this. So while we cannot tell you what is going on with the people suffering, perhaps what we can figure out is who needs to answer for this. Our reporters, Shari Sutraan and Sarah Larnuk, will join me in a moment. Wait for it. This episode is brought to you by Monica Boland, Nicholas Freer, Sherry Sadler, Lenore Lukasik-Foss, Krusten Heyer, Neil Walker, Helio Gomez, and Timothy. Hi, I'm Timothy, a voice actor from Toronto. I support Canada Land because the team keeps producing really great shows that keep me engaged in important Canadian stories, many of which would have otherwise escaped my attention. I cut any number of streaming services before I stop supporting Canada Land. [MUSIC] Hi, Shari. Hi, Jesse. Shari, we've been returning to this story again and again for years now. And what prompts us to do it is when something new happens. And I get very excited about that because we're slowly learning more and more about what's actually going on. What is the new thing that happened prompting this episode today? Okay, wait, Jesse. I think before we get into the new stuff, we have to go back to the beginning of the story. I think I could probably tell this story from memory at this point. I'm afraid I'm going to get something wrong. Should we try to tell this together? Sure, yeah. When the first case in New Brunswick emerged of somebody presenting with this horrific mystery disease of some kind, loss of neurological function, people hallucinating, losing the ability to speak, degenerating, it gets worse and worse, some of them eventually dying. And nobody knew what caused this. Yes, exactly. And I remember specifically that it was being seen in patients that were quite young. Yeah, a lot of it looked like it was Alzheimer's, but there were nine people in that group who were between the ages of 18 and 40, and they got it. Exactly. And then I remember, so there was, there's a doctor that was treating most of these patients. So he's a neurologist in New Brunswick. And he was testing for almost everything that could be a neurological problem. And the tests were coming up negative for everything. And I think that this came out in 2021. There's this, if I recall, there's like a federal body that looks out for mad cow disease. They thought maybe it has to do with deer or eating something that they shouldn't be eating or something to do. And I think that they more or less ruled that one out. So essentially, the leading hypothesis was that it was some form of first fall of yack up disease, which is essentially related to mad cow disease. However, when they tested for mad cow disease, those tests came up negative as well. The one theory being the prior disease at this point, the other one being like linked to the shellfish, which is like, you know, there's like a history of like red tide and weird toxins that you can get from shellfish. But then if I'm remembering this story correctly, the environmental factor that keeps coming up is this blue-green algae. And New Brunswickers are familiar with blue-green algae blooms, that there's this algae that can bloom in freshwater. And they say you can't go swimming here because there's blue-green algae. And blue-green algae collects in shellfish. So the shellfish is not necessarily itself. It's the algae that you're getting by eating the shellfish potentially. So we actually have found in access information documents that these scientists at the top level of the government were essentially assigned to look into potential causes. And one of their biggest hypotheses was that it was environmental, either through the blue-green algae or some other sort of environmental toxin, which was causing this illness. And this is what they had found around 2021 while they were still looking while they were still looking. And do you remember what happened after that? This is when the fuckery starts. And this is when it kind of falls into our category into our jurisdiction because the scientific stuff, not my specialty, but government coverups, that's what we do look at. And what I recall smelling very, very fishy is that all of a sudden, the federal government is not saying anything about this, but New Brunswick's health authorities. They got up in front of everybody and said to paraphrase, there is no cluster. We've looked at this closer and each of these people has a different disease. There is no mystery disease is what the headlines read. Oh, false alarm, no mystery disease. So the province essentially canceled meetings that were already set up with these federal scientists and essentially said we're doing this on our own. But what we have found now through our reporting and information gathering is that a lot of patients still say they have been misdiagnosed that they had already been tested for those things that came up negative. And I'm remembering another detail here, Sharice, which is that there was a proposal to fast-track a resource for New Brunswick. There was a possibility that they were going to get $5 million for a research program to investigate the possibility of an environmental cause. And rather than do everything they could to secure that money and use it, New Brunswick specifically asked for that funding application to be put on an indefinite hold. Okay, so now they've lost interest in hunting for this. They don't want the money to search for it. And there's nothing to see here, folks, because these are all known diseases. And there are three problems with that. The first, as you just said, is that some of these people are like, yeah, I'd be misdiagnosed. This is not a known disease. I'm not a 20-year-old with Alzheimer's or something else going on here. The second is that these patients still require care. But the third problem with trying to shut it all down is that the patient count keeps growing. And getting that information that the patient count keeps growing, I have not seen pick up of those stories where we have Canadian media putting those questions to Canadian officials. Yeah, and I think that's a good point that I actually want to go into a little bit, because I think the reason that we're not seeing a lot of pickup on this story is the fact that when the province of New Brunswick released their report saying, hey, there's nothing to see here, there's no cluster. They repeatedly made references to difficulties they were having with the key referring physician, which they did not name, but which we can only think to be Dr. Alier Morero, who has been the main physician on this since the beginning. I mean, of course, they were talking about Morero. That was basically confirmed when our colleague Sarah was able to secure that interview with him, which was a very daring interview. He essentially took his job in his hands to speak with us. But I think he felt a responsibility to his patients, his growing list of patients, he felt a responsibility to speak out on their behalf. Specifically here, we should play a clip of what he had to say about the high levels of environmental toxins that he was finding. So far, we are around 200 patients tested. The majority of my patients, first of all, the great majority of my patients show exposure well beyond detection level to one or more of these substances, and sometimes very high. I'm talking people who are not professionally exposed, and this happens to be concentrated in more in some communities or areas more than others. 200 patients with mysterious symptoms, a doctor who thinks that these cases are connected, a provincial government that says they are not. That is where this was all left, until the emails started to leak. This episode is brought to you by article. It is not too late this summer to adorn whatever outdoor space you have with beautiful, comfortable, stylish furniture from article. They excel at patio furniture. I just spend a lot of time relaxing and talking to friends and hanging out outside. I like that article has a website that makes it super easy to go through their mid-century modern coastal industrial Scandinavian bohemian designs, picks up mouth and have it show up at my door. The shipping is fast and affordable across this country. They don't leave you waiting around. You pick the exact delivery time, and that's when it shows up. Listen, article is so confident that you are going to like them as much as I do. They are offering you 50 bucks off of your first purchase of $100 or more. That is like a 50% discount if you buy something small just to see if you like the experience. To claim this great offer, go to article.com/candidoland. The discount will be automatically applied at check out article.com/candidoland for $50 off of your first purchase of $100 or more. This episode is brought to you by BetterHelp. I have been working out with weights. Don't laugh. It feels really good. It's good for health. I've noticed, though, in gym culture, gym bro culture, people are really fixated on the gratifying stuff. Getting the washboard abs, doing biceps, and they neglect the legs, and that's the foundation, and they look weird. They have like little skinny, scrawny legs, and then they're super ripped. Otherwise, what am I getting at here? Don't skip leg day. When it comes to mental health, the equivalent of never skip leg day is do not skip therapy day. If you are taking care of other parts of your life, but you are neglecting your mental health, I think that you lack a good foundation. You don't have to be in crisis. It should just be a part of how you take care of yourself and stay well and you feel good when you're getting good help from a service like BetterHelp. So do not skip leg day and don't skip therapy day with BetterHelp. As the largest online therapy provider in the world, BetterHelp can provide access to mental health professionals with a wide variety of expertise. Visit BetterHelp.com/CanadaLand today to get 10% off of your first month. That's BetterHelp, h-e-l-p.com/CanadaLand. Help h-e-l-p.com/CanadaLand. Okay, Shari, it's the first leaked email that we're going to discuss written by one Dr. Michael Kultart. Who is this doctor? Yeah, so the first scientist is Dr. Michael Kultart. He was the head of the Christvald Yakub Disease Surveillance System for the country, and that's a system that tracks when CJD, or more commonly known as Mad Cow Disease, appears in Canada. And what is his relationship to this thing? So because he was such an expert, he became one of the lead federal scientists involved in this sort of working group looking at the cluster. So he's kind of in the center of it. And we got our hands on a leaked email that we're not supposed to see, what does it say? So this email happened in October 2023, almost two years after the working group was shut down, and he's talking to a colleague within the public health agency of Canada whose name we don't know. And he said, and I quote, "All I will say is that my scientific opinion is that there is something real going on in New Brunswick, but absolutely cannot be explained by the bias or personal agenda of an individual neurologist." I'll continue. I got the email in front of me here. He says a few cases might be explained by the latter, an individual neurologist, but there are just too many now, over 200. So there he is, reflecting that same number that Marrero had, that the case count has quadrupled. Dr. Michael Kultart co-led the task force that was disbanded. In this email, he is essentially corroborating what Marrero told Canada land a year ago that the case count has more than quadrupled. Yes, it was confirming Marrero's number. Yeah, and he goes on, "I believe the truth will assert itself in time, but for now all we can do is continue to collect information on the cases that come to us as suspect prion disease." And what he offered in the email was what he said with his strongest hypothesis that it was an environmental exposure or combination of exposures that's triggering this illness. So he's still on the case. It's interesting. He's still on the case, even though he's being told, even though the task force is being disbanded and the official line is that there is nothing to investigate. What I have to highlight here is that this was a private email he sent to a colleague, which was then obtained by journalists, including us. Cherise, have you tried talking to Dr. Kultart? That's a very good question, but I'm leaving back to our colleague, Sara Lanyuk, and here's Sara. So when I originally went through that enormous trove of documents, I emailed almost every person listed at the provincial and federal level. This, of course, included Michael Kultart. When I sent out all of those emails, there was only one or two really low-level researchers that got back to me at the provincial level, but Kultart was of particular interest to me because he stood publicly with Marrero far later than most. This included an interview with the Toronto Star in May 2021. Kultart was obviously willing to be seen backing Marrero in the media, so I reached out to the public health agency, and I heard back from a media spokesperson named Nicholas Janvo. He said Kultart did not have "any availability for an interview." I then replied, "See seeing Kultart offering that I would speak to him at any time that fit his schedule, I would even extend our deadline." Janvo then removed Kultart from the email chain and reiterated, "As mentioned, Dr. Kultart does not have any availability for an interview at this time." Well, it's interesting when you don't actually get a "no" he won't speak with you, and it just like, "Oh, it's just like an endlessly unsolvable scheduling problem," because they don't want us to be able to say, or this is my editorial thought on that, that the reason why they're doing it that way is they don't want us to be able to say that they refuse to speak. Exactly, but Sarah, being the smart journalist that she is, suspected there could be something going on in the background. So what she did was she filed an access to information request for the communications that happened around her request. Yeah, you have to send me all documentation where you're talking about me, like this annoying reporter is reaching out, "What do we do about it? Did you get anything?" So I filed an access to information request between me and this communications officer, Nicholas Janvo. This email chain released me under access to information request confirms that at no point was Michael Kultart ever asked or consulted about his availability. He was never in fact asked if he wanted to conduct an interview with Canada Land. Janvo in fact asked his superior if he could just stop answering me altogether when I pressed him on it. But as it turns out, reading through all of these emails, that directive actually came from far higher than just his immediate superior. And in this email chain, we can see that the directive to ignore all email requests at the federal level came from Deputy Chief Public Health Officer of Canada Howard New. But it's also worth noting that on those emails, both the Health Minister's office and Dr. Theresa Tam's office were CC'd and notified of all of our requests. The only person who seemed to be absent was in fact Dr. Kultart. And were these federal government communications people? Yes. The Kultart was under the Public Health Agency, Canada, which is federal. All right. So that was the first leaked email. Let's talk about the second one. Dr. Samuel Weiss. Who is Dr. Samuel Weiss? He's working at the top level of the neuroscience field. He's a member of the Order of Canada and he's in the Canadian Medical Hall of Fame for a discovery that led to research on treatments for things like Parkinson's and Alzheimer's. So in this leaked email, it seems like he's talking to a patient and he talks about the working group again being shut down. All right, let me read from this. In the spring of 2021, I felt incredibly optimistic that an all of government effort to unravel the mystery was in the cards. However, in short order, the scientific effort was shut down at the request of the governments. Interesting that he says government's plural there. I don't think it is helpful to suggest or point to who or why. Suffice to say that we were prepared to marshal both financial and human scientific resources to tackle the mystery, but they were declined. Yeah, so here he's again supporting this idea that the federal scientists really wanted to keep investigating this illness and they were shut out of it. And then he goes on to say the best interests of those affected are not at the forefront of the actions taken. How this has and continues to be the case is part of a larger mystery around the intentions of government's focus on power politics and process over the humanity of care. Shreece, I think we got to take a second here like power politics and process over humanity. Yeah, I can't think of anything more damning than that. It really makes you think of the actual human situation here. People in their youth with this degenerative horrific illness and here is one of the doctors who wants nothing more than to get to the bottom of it saying that power politics and process are being prioritized by government over humanity of care. Yeah, and that he says right before that this line where he's talking about the affected are not at the forefront of these actions. And here's the kicker at the end of the email. Weiss references a number of patients, a case count that has not yet been reported or published anywhere else. And it's a very high number. Here's what he says. All I can offer is my sincere apologies for our poor response to the mystery illness and my hope that you don't suffer too much. You and the 350 others affected deserve so much more. 350. Again, we don't know who he sent this to. That name has been redacted. It sounds very much like he is writing to either a patient or a relative of a patient. He is apologizing very sincerely to them and cites the number of 350 others affected. I want to return to that other word, actually a letter in his email that seemed highly relevant to me when he attributes the shutdown of this process to government's plural. So essentially all we know is that when the main working group was shut down, New Brunswick took over. New Brunswick has been the face of it. Even though there were federal scientists involved when they were working collaboratively, when that process stopped, it was the New Brunswick Health Authorities who told us the process has stopped. It was the New Brunswick Health Authorities who said there's no mystery illness. It's the New Brunswick Health Authority who we caught in a discrepancy about how many patients there were. I think we said very explicitly this person's lying because the number that they had in hand was larger than the number they were saying publicly. So they've been wearing this. Even though two of the scientists we have here saying that there's a lot more to this are federally employed and one of them is attributing this mysterious politically motivated shutdown to government's plural. And what's more is that in the documents that we have received from access to information requests from previous years, it does show that there are potential patients in other provinces in Ontario, in Newfoundland, in Quebec, patients that are showing similar symptoms of these people in New Brunswick. We've previously reported patients in seven other provinces. Seven provinces. We've seen things that look like this pop up and now two federally employed scientists are saying that there's more here than the public has been told. It seems very clear to me, Sharees, that this is not a provincial matter. And I want to know what Canada's chief medical officer, Dr. Theresa Tam, has to say about this. I mean, these are two scientists who are making some pretty serious allegations about the interests of patients taking a backseat to the interests of politics, to the fact that we don't have all the truth. Referring to that this is not just one scientist, that there is something going on here and the truth is not yet out. These are her people saying that. So what does she say? So we said in questions to Theresa Tam and the Federal Health Minister and her received a reply from a spokesperson. And in this very long jargony reply, it came up repeatedly that it was a new Brunswick that was the lead authority on this and that the public health agency of Canada did not have the ability to supersede the province. They also mentioned that Dr. Kultart and Dr. Weiss had not been involved in this file since 2021. You know, I hope that Dr. Michael Kultart is correct and the truth will assert itself in time. If that is the case, I think it's going to come from more leaks, more whistleblowers, more digging, more of our work. Hopefully, some of these A-tips that Sarah has filed might come back with something, but it ain't going to come from Dr. Theresa Tam. Thank you, Theresa. Thanks. That's your Canada Land episode. If you value this podcast, if you value the work that our reporters do to bring you information that you need to hear, please support what we do. We rely on listeners like you paying for journalism. It's the only way it gets done. As a supporter, we will give you everything we can premium access to all of our shows without ads, early releases, bonus content that nobody else gets. You'll get our exclusive newsletter discounts on our merchandise, invites and tickets to our events. More than anything, though, you will be doing something about the journalism crisis. You'll be a part of the solution to it. You will be making our work free and accessible to everybody. Come join us now. Don't even think about it. It's the right thing to do. Click on the link in your show notes or go to CanadaLand.com/join. You can email me at Jesse@CanadaLand.com. I read everything you send. Our website is CanadaLand.com. Cheri Suturing reported this episode with help from Sarah Larniuk. Our senior producer is Bruce Thorsen. Audio production and editing from Caleb Thompson. Max Collins is our production coordinator. Our editor-in-chief is Karen Puglaze. I'm your host Jesse Brown. Our theme music is by so-called syndication is handled by CFUV 101.9 FM in Victoria. You can visit them online at CFUV.ca. You can listen to CanadaLand ad-free on Amazon music, included with Prime. In 2021 Afghanistan fell to the Taliban. The lives of Raha and Mahua, two 20-year-old women and best friends were forever changed. One decided to stay. I feel like I'm not, you know, worse than me. And the other to leave. We got our tickets today to the Germany. These are their audio diaries. 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