alt Hacker NewsA battle over Canada’s mystery brain disease
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The answer is "nothing"
The only common factor between these patients is Dr. Marrero. It is notable that he is not the only physician who works in that clinic, but is the only one diagnosing this condition. The most likely cause is weak diagnostic skills for challenging patients.
Unfortunately, a majority of these patients likely have Functional Neurologic Disorder https://www.mayoclinic.org/diseases-conditions/conversion-di... , which is a horrible condition that accounts for a plurality of cases seen by most neurologists. This phantom diagnosis will probably make recovery almost impossible for those people. Acceptance of that diagnosis is the number 1 positive indicator for recovery.
Source: I live in the canadian maritimes, and know many neurologists.
Part of the concern is the structural opposition to clarity in a response. I don't know if this runs along party lines, or interpersonal relationships, or a state/national funding issue in public health, but something about how the problem was handled and public trust has gone badly wrong.
It's entirely possible as for cancer clusters there is no single causative agent. That stuff demands really careful thoughtful handling, not just brush-offs. Getting the public past personal experiences to epidemiology and subsequently things like mental health, is very hard.
Look at ME and what post covid syndrome showed.
I’m not qualified to comment intelligently on what might be going on here, but I’d like to add some background color that the article lacks.
Creutzfeldt–Jakob Disease is a prion disease [0] for which there is no definitive diagnosis in vivo. A confident diagnosis can be made only after examining brain tissue under a microscope.
Prions are an unusual type of mis-folded protein that induce other proteins to take on a similar mis-folded shape when they come into contact with them. The mis-folded shape of the prion itself is what causes the mis-folding in adjacent proteins. It’s a chemical-bonding thing at the molecular level. It’s the shape of the prion that causes other proteins to take on a similar shape and become prions, etc.
Some prion diseases occur spontaneously (when a protein takes on a mis-folded configuration due to mis-transcription or random energetic impulses) and some are transmitted, typically by eating some part of an animal that contains prions, which then end up in your own body, inducing proteins in your body to take on prion configurations.
Prion diseases are the only known transmissible diseases that do not involve the replication of a pathogen’s genetic material in a host cell. The only known prion diseases affect nervous tissues, and in humans the only known prion diseases affect brain tissues.
I’m not an expert on prion diseases, but I’ve had a bit of a fascination with them since having to report on a bunch of USDA surveillance lectures on mad-cow disease (bovine spongiform encephalopathy, BSE) and to summarize a bunch of symposia on prion diseases in a previous life. The symptoms reported in the article sound very much like a prion disease, and the tests for CJD indicate that the doctors in the region suspect as much.
But we simply don’t have good tests for prion diseases in vivo. And prion diseases are not well understood in general, so it wouldn’t be surprising that a new one would present as something of a mystery.
It is also the case that I know very little about New Brunswick, but I will mention that prion diseases in humans are thought to be far more commonly acquired than spontaneous. The most common cause of acquisition is eating animals with endemic prion diseases; this is most often nervous tissue of venison, but rarely nervous tissue of cattle infected with BSE, which is present in Canada more than anywhere else (by a small margin).
It is also possible (but not likely) that a prion disease can arise de novo.
I was diagnosed with a mysterious tachycardia last year, coincidental to this headline: while I was living in Canada.
At one point I checked into the ER with a resting heart rate around 200 BPM, and on some days my smartwatch couldn’t even detect a pulse because it was racing so fast.
I eventually recovered-though I still avoid wearing smart devices because seeing my heart rate triggers anxiety-but the whole period ended without a root cause and with me just being put on heartrate reducers for a while.
I really feel for anyone dealing with "mystery" medical conditions. It’s a tough place to be.
I think it would be worth it to investigate cyanobacteria toxins in water over there as they can cause similar symptoms. Next thing to check would be local sea food. I feel like glyphosate is a red herring here. Heavy metals could come from frequently eating local fish/shellfish.
> "I don't want to provide exact numbers of anything, but let's say it's an unusual number.”
Wait… what?
> But the government had decided against examining any of the patients in person
Wait… what?
Some questions I'm stuck with:
* are all the patients really sick or as sick as the symptoms he documents, or is it some kind of Munchausen induced or lied about by the doctor?
* Or are they all sick, they're just not getting the help they need because he wants to have a mystery disease?
* If they're all sick, is it then a higher prevalence than expected, so even if there is no mystery disease there is still something environmental or similar that should've been explored? Aka, is there a cluster, it's just a known disease?
The only common factor between these patients is Dr. Marrero.
BMAA and domoic acid induce extremely similar symptoms and are certainly on the rise in the water there.
My theory is that this hypothesis is shut down by the fishing industry.
A bit of a messy situation, since there is both documented precedent for undisclosed chemical use to cause severe population illness (e.g. numerous times in "cancer alley"), however there is also precedent for charismatic doctors to create a cult of personality that might create noise.
Compare to Havana syndrome - another disputed 'mystery brain disease'.
Anyone have a link to the JAMA paper?
This is such a frustrating situation to read about, because it is clear that Dr. Marrero is out of his depth, but it’s also clear that whatever this cluster is - real or imagined - was horribly mismanaged by the health officials in charge.
The fact that the investigation was disbanded simply because the patients had symptoms that can be tied to existing diseases is utterly asinine. As if there’s no reason to investigate why so many people in such a small area have similar conditions, or even to investigate whether or not the demographics of the supposed cluster are out of the ordinary in the first place. Even if there was no related cause at all, such an investigation could be used to determine that Dr. Marrero was the cause of a problem and stop him from doing harm. But instead the result was that no satisfactory conclusion was reached for the majority of people, and the patients continue to suffer.
These people need help and they are being failed by their doctors, their administrative officials and their representatives all at the same time.
These sick people there need to move out permanently to go live far away from the province and see if they get better. If it's prion disease, they probably won't reliably get better by moving alone. They also should do private testing for heavy metals.
Deep dive into New Brunswick, JD Irving, and their ongoing issues with Glyphosate pollution. Canadian researchers specializing on CJD have been blocked from investigating this case [0].
Sadly, the Irvings have extremely close ties with both the Liberals [1] and Conservatives [2][3] and are essentially untouchable due to Canada's parliamentary nature.
The NYT has been doing an on-the-ground report on this issue for a couple years now [4][5]
It reminds me of similar stories I heard while growing up from family friends of mine who ran a construction business on Vancouver Island and the Lower Mainland about how cheap it was to "lobby" and get a personal meeting and photograph with Martin and Harper, and this was after Railgate.
[0] - https://www.theguardian.com/world/article/2024/jun/03/canada...
[1] - https://www.theglobeandmail.com/politics/article-minister-le...
[2] - https://nsadvocate.org/2020/09/15/big-win-for-the-irvings-in...
[3] - https://www.cbc.ca/news/canada/new-brunswick/pcs-criticized-...
[4] - https://www.nytimes.com/2024/08/14/magazine/canada-brain-dis...
[5] - https://www.nytimes.com/2025/04/01/world/canada/irving-famil...
I watched a documentary about Morgellons, and the patients would often seem quite reasonable at first, but the more they spoke, and the more they described their symptoms, the crazier they sounded.
One patient, whose brother, ironically, was a physician (and one skeptical of Morgellons as anything other than delusional parasitosis), seemed earnest, if intense, in describing how Morgellons had destroyed his quality of life... but then he started describing how he felt like he was able to inadvertently affect electronic devices, especially RF-based ones, because the Morgellons "fibers" in his extremities caused some kind of interference. At this point, he sounded squarely cuckoo for Cocoa Puffs.
However, one could very well imagine an infectious disease, with or without a dermatological component, causing delusional parasitosis. Maybe they have some virus or something that makes them think they have these "fibers?" Or a parasite? Toxoplasma gondii is known to affect inhibition. UTIs in the elderly are notorious for making them crazy.
FND == neurologist gaslighting the patient. Formerly known as hysteria.
Its hard not to see this as FND and similar conditions with a cult of personality around a charming but misguided doctor. Lang's team really seems to have solved this mystery, but some patients seem to prefer the allure of a mystery illness and the one young lady in the article seems to have munchausen by proxy-esque parents.
The article ends in a heart breaking way. The one woman is applying for MAID. I wonder if she had better care if she could have been properly diagnosed and treated. Instead, she is going to try to end her life.
I think there's a real indictment here about how liberal Canada's MAID program is which the article glosses over.
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If this reporting is accurate then it certainly paints a picture of cult-like behavior. Personal charisma, empathetic and caring, "strangely conspiratorial" behavior during appointments cementing an us (one lone doctor and helpless patients) against them (wealthy and powerful people) narrative, etc. are very effective on distressed people. On top of that it seems that apart from being tested over and over again and being told they have a "mystery illness", the patients aren't really treated whatsoever? Whether there's a true cluster disease or not, evidence seems to suggest that he's just adding a lot of totally non-mysterious cases to his cluster. Evading pretty mundane questions like how many of his cluster cases actually show elevated levels of environmental toxins just adds to the suspicious signs. Plus
> The couple waited eight months to get important test results from Marrero, Strickland said, as April's condition worsened. Soon Strickland could no longer manage her care. But to get her a place in assisted living he needed a letter of support from Marrero. "I think I waited four months for that letter," Strickland recalled. "I kept phoning and asking."
just sounds like medical malpractice. You shouldn't keep five hundred patients hanging if you can't handle five hundred. Makes all the talk about being empathetic and caring sound like bullshit. I feel bad for those who are probably misdiagnosed but refuse to get a second opinion thanks to the successful mental subjugation.
This is a textbook case of mass hysteria. A whole lot of people in one place, all coming down with a mystery illness, with no apparent cause, and everyone has different symptoms. Instances like these have been reported multiple times in the past 20 years, as well as for thousands of years in the past. They all genuinely feel the symptoms. But the cause is clearly no physical thing in the environment.
I grew up in New Brunswick. It is a strange place politically.
I find it wild that the BBC never mentioned the most glaring underbelly of this:
New Brunswicks most significant employer for the past 100 years is Irving Oil & Irving Paper and Irving Forestry. They are different arms of a privately held family-run business, run by the descendants of the original founder (whose records are not as public as a traded company), in charge of the main industries of the province. They owned every newspaper in the province, and are known to be adversarial to any community paper, starting new papers just to drive out of business the small upstarts they don't own -- I've seen it play out in my community. People are literally afraid to criticize this family publicly, because they fund SO MUCH of the nonprofit sector. If you are trying to get a project off the ground, you can't look sideways at them or your project will be buried. And their papers certainly won't speak kindly of your criticism.
And most glaringly, one of their ex-Vice Presidents was premier of the province during this time.
So there is an extra level of concern that some locals have about the optics of the province shutting down the research.
The Irving family is highly manipulative of political affairs, and imho have held the province back for decades (e.g. influencing what schools get funded/built, to create the working stock that support their businesses, etc)