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Mystery brain disease patients in New Brunswick say they welcome investigation (ctvnews.ca)
130 points by luu 7 days ago | hide | past | favorite | 88 comments





Context: Moncton is built on a swamp. It has _a lot_ of mosquitoes during summer and 3 to 5 ft of snow during winter. It had (has?) the lowest home prices in all of Canada because of this. NB also has the lowest income per family (or next to lowest, Nunavut might be lower).

MS is more common in northern climates as well, but afaik it's not higher than average in NB.

Source: I have spent quite a bit of time in Moncton.


>It had (has?) the lowest home prices in all of Canada because of this.

When was this? Moncton is the biggest and fastest growing city in New Brunswick.


And Moncton/Saint John/Fredericton all have pretty comparable prices.

I really wish we could bioengineer mosquitoes and ticks to not bite humans.

Behold, man made horrors beyond comprehension! Must be like "I have no mouth and must scream" for the poor mosquito.

https://old.reddit.com/r/interestingasfuck/comments/1grpkok/...


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I wish we could bioengineer mosquitoes and ticks to not bite humans, and dress it up with a thin veneer of being natural so that you felt happy about it too.

Why is that? What do you fear so much?

Let me let you into something: There will always be something to fear, and the more you go trying to squash every little bug the more something else will find you. You can’t escape your fear of pain and death no matter how much you think you are god and must alter the universe around you to stay “safe”.

Before meddling in the intricacies of nature for an illusion of safety, the best course is the ancient adage:

Know thyself.


How do you feel about vaccines, for instance? They kind of interfere with nature. We ought to be infected instead, right, because it's natural?

Or do you draw a line between bacteria and insects for some reason? If the ticks are left unaltered but we eradicate the lyme disease bacteria (and the typhus bacteria, and the Q-fever bacteria, and the other seven or so diseases ticks can spread) is that alright?


Sounds like you’re moving the goal posts here.

You were proposing bioengineering another species of animal to limit its capacity for survival and cooperation in a complex ecosystem well beyond your capacity (or all of humanity’s capacity) of fully understanding.

That kind of hubris has ripple effects across the world that we cannot possibly predict. Like clearcutting old growth forest it’s incredibly short sighted.


> It has _a lot_ of mosquitoes

Can mosquitoes transmit prions?


In 2019, the conclusion for this question by medical professionals was maybe for mosquitoes, but definitely for arthropods like ticks.

Anything that pokes into one mammal and then into another might be able to transmit basically anything. This is why doctors dont reuse needles no matter the percieved risk.

Moving out seems to help - wild.

> The couple moved to a new town — Canaan Station, N.B. — and Nesbitt made lifestyle and dietary changes. Nesbitt has also started playing video games to improve hand-eye coordination. “There are some things that are still regressing or still degenerating, but many of the symptoms have started to relieve themselves,” she said.

> She still has seizures and tremors, but they’re not as bad or frequent. She’s also able to stand for longer than a “couple of minutes,” and the nerve tingling on one side of her body is not as frequent.



From your first link:

symptoms such as "rapidly progressing dementia", unusual weight loss, "tightening of the muscles", uncoordinated gait, and muscle atrophy

Reminds me of https://en.wikipedia.org/wiki/Organophosphate-induced_delaye...


Given other comments on this thread regarding large densities of mosquitoes, this might actually make sense if large amounts of insecticides are used in the region.

> The CJDSS ruled out any prion disorder, including Creutzfeldt-Jakob Disease (CJD)

Thank god.


That was my knee-jerk scenario to think of too - especially given the rising prevalence of Chronic Wasting Disease in the US states near that part of Canada.

It's notable that the CJDSS director said they ruled out "known forms of prion disease" specifically, and the neuropathologist Jansen stated "no evidence for a prion disease was found" - I think the sentence you're quoting is actually misleading because it seems to suggest that there is negative evidence for a prion disorder, which there is not.


Seems like it would be exceedingly difficult, bordering on impossible, to make a categorical negative finding that there's no possibility of prions because you'd have to have a test to detect any misfolded protein at all.

I am not a medical professional, so take this opinion with a grain of salt, but it seems like it should theoretically be possible to test for a concentration of misfolded proteins that propagate themselves.

How complex or expensive this could be is not something I have any insight into at all, it could be something that takes millions of dollars and 20 years per test.


Only for ones that bind to the proteins in your testing apparatus though. If this hypothetical new prion doesn't bind to the slate of proteins in the test it wouldn't show anything. Unless there's an easy way to detect the fibrils they form more easily and generally.

> Jansen presented his findings to 20 to 30 colleagues in which he suggested that the eight patients previously diagnosed with the novel neurological syndrome, "represent a group of misclassified clinical diagnoses", and that they "died from a variety of causes, including cancer, Lewy body dementia and Alzheimer's disease"

It seems this isn’t that complex of a case really though? Upon autopsy they just had normal issues.


I won’t presume to suggest a cause, but it’s worth acknowledging how terrifying it is that any of a number of compounds in a relatively small dose could cause wild effects on the human mind or body.

ICYMI there has been a ongoing 20+ year epidemic of kidney disease in Central American manual laborers, no one has pinned down an exact cause yet but it definitely seems to be heat exposure related. Not quite as scary as something that resembles CJD but lots of researchers looking into for a long time without finding definitive cause.

https://www.bu.edu/sph/news/articles/2019/central-american-k...

https://www.npr.org/sections/goatsandsoda/2019/08/26/7538343...


There have been sufferers ranging from age 18-85, and it affects both men and women in approximately equal numbers. Both of those things are highly suggestive of some kind of environmental cause. If this were an episode of House, a lot of peoples' homes would be getting broken into right about now.

They break into people's houses in that show?

House sends off one of his minions who find the brake cleaner in the sink cupboard, from which he immediately figures out that the patient's erratic behavior stems from a disease of the liver so the previous brain surgery was largely unneccesary.

It's never lupus.

It's a medical take on Sherlock Holmes. Everything makes more sense when viewed through that lens.

House and Wilson Holmes and Watson

Which is a criminological take on a medical doctor: https://en.wikipedia.org/wiki/Joseph_Bell

Yup; it isn’t a realistic show, but entertaining.

Doctors in New Brunswick have generally been pointing to the use of certain pesticides/herbicides as likely culprit so far

Well, yes. This has always been the case, I'm not sure it's worth being especially terrified over it.

Botulinum toxin has an LD50 of a couple of nanograms per kg of body weight, which makes it especially mad that people use it in a fairly loose fashion for cosmetic skin tightening.


The opposite should be investigated as well. The deficiencies in nutrients like copper, selenium or molybdenum are generally only known in animals, and rarely investigated among people. Copper deficiency can cause various symptoms like weight loss, loss of pigment, indigestion, or neurological problems. It seems that molybdenum deficiency shifts the symptoms towards neurological, while the rest happens from copper deficiency alone.

I think some people have been talking about selenium deficiency since the 1970s. The trace metals are something of a problem since it's also possible to have harmful effects from too much.

Why would these deficiencies occur in one specific geographical area ?

All of the milk in Canada is fortified with vitamin D because the population is more at risk of vitamin D deficiency due to geography. (Less sunlight for more of the year.)

So it's not entirely _impossible_, but I agree it doesn't seem very likely.


Or it shows how fragile space and time really are.

The US Army tested Agent Orange in an area near Gagetown, about 80 miles from Moncton, in 1967. Maybe some drums of Agent Orange got left in the woods somewhere in the area and are leaking into the water table today?

https://www.canada.ca/en/department-national-defence/corpora...


I used to hang around someone who's dad was allegedly doused in Agent Orange in the New Brunswick woods, possibly around that time. Their father apparently developed a lot of mental health issues, and they were also born with some severe ones themselves.

I've also heard talk of glyphosate allegedly causing health issues in New Brunswickers, and that Irving uses it as an herbicide for their woodlands across New Brunswick.


It’s both frustrating and disheartening that the investigation into this disease has been ongoing since 2000. Sometimes, I can’t help but feel that we, Canadians, lack a sense of urgency. These individuals have endured years of suffering. I hope we get some breakthroughs now, for their sake.

For their sake certainly, but frankly for all our sakes also. I've never felt comfortable knowing this is going on both because obviously it's awful for the people involved but selfishly... we can't just have stuff like this happening in the country, doesn't matter if it's rural or city, shit like this is a sign of a dysfunctional society at large and it's how things like COVID-19 happen, the feds not taking it very seriously and superseding the Provence and municipality is not good in instances like this, they should have boots on the ground years ago with an answer, this is insane to me. (sorry for the rant, just dives me nuts what the country is coming to, and it's not politics imo, it's us as Canadians who are the problem right now)

> since 2000

Edit: I meant 2020.


What i do not understand in this case, is why politics are involved in this ?

Why do the fact than a local government changed from Conservative to Liberal, did have an impact on the story ?

Either a case must be opened or closed, must be decided by doctors & researchers alone, not because of politics.


> What I do not understand in this case is why politics are involved?

This is a rural area with a lot of forest. The forestry service uses high concentrations of glyphosate dumped from helicopters to thin the forest.

The forestry service, and its use of glyphosphate is government, and with any government sponsored issue politics will make or break some politician's day.

The fact of the matter is, it doesn't matter that tests sampled at points show glyphosphate levels are well under the point where adverse risks occurred in the labs.

It is possible the chemicals are inducing toxins in microflora that are novel which then cause these issues. Regenesis had such an episodal plotline with fungal spores.

It is also equally possible that the safety testing didn't properly conform to standards, where adverse effects are found at much lower levels than advertised.

The cluster areas according to some news outlets seem correlated to the aerial spraying which is why there's such a push to find out what's going on, while the politicians at higher levels don't want to touch it with a ten foot pole.


>This is a rural area with a lot of forest. The forestry service uses high concentrations of glyphosate dumped from helicopters to thin the forest.

Moncton is not a "rural area with a lot of forest".


The forest is essentially “a cow’s fart and two shakes of a lamb’s tale” away from Moncton in a 20 km radius from downtown.

Anything public ends up as political. Whether effort is spent on this or not is a question of money, and as always people have to advocate for their own health. Being alive is a political issue.

If it turns out to be some sort of public health issue such as use of toxins in industry, that's extremely political as well.


The province is largely dominated by one family (Irving’s), and its possible that the government is unwilling to look into the issue.

This just baseless conjecture, and even somewhat conspiracy-theory adjacent, but my best guess is one of the Irving families' companies is somehow involved here.

The Irving's, if you don't know, are one of the richest families in Canada, and effectively own the province of New Brunswick and run it like their own personal fiefdom. They are also heavily connected to both the Federal and Provincial conservative parties (And the Liberals too honestly), so I would assuage a guess that they had something to do with squashing the former investigation as they knew they were somehow culpable and used their cronies in the government to protect them from any potential liability.

Again, this is all just baseless conjecture, but it feels like at least a potentially reasonable explanation here, as it would be far from the first time billionaires used their wealth and political connections to kill an investigation into their own malfeasance.


What sort of industrial chemical manufacturing plants are in the area?

Irving is a local logging company that uses chemicals to kill a specific type of wood (hard wood if I remember correctly). The Irvings basically own NB afaik. There were also some protests about fracking maybe 10 years back because of the chemicals used.


Commons did a great episode on the Irvings' dynasty a few years back: https://www.canadaland.com/podcast/dynasties-2-the-irvings/

The chem hypothesis is down these lines: https://www.conservationcouncil.ca/investigate-glyphosate-co... and https://nbmediacoop.org/2024/10/10/could-a-neurotoxin-resear... - Some people think it's related to seafood, they eat a lot of lobster in NB, way more than the rest of Canada, but it doesn't seem to be an issue with the other areas out there and they eat a lot of lobster also.

Maybe post-catch or something— like a cleaning chemical used in fish markets or something— but one branch of my family are lobstermen in nearby waters south of the border and I haven’t heard of any such thing happening in their communities.

I have connections to lobster fishermen and woodsmen working Irving woods here in Maine and neither have any experience like this. Does Irving spray defoliant in the US?

What we DO have is: https://en.wikipedia.org/wiki/Jumping_Frenchmen_of_Maine

Interestingly, that article massively downplays how much this affects my family, and how clearly genetic it is. I literally and physically struggle to not do something my girlfriend asks me to do, a la the plot of Bioshock. She will explicitly tell me "WHEN YOU HAVE TIME or WHEN YOU NEXT COME OUT, bring me some water" and I cannot wait to do it. This behavior generalizes across siblings and generations, including to my somewhat deadbeat father who did not raise me, and thus it cannot be a learned response.

This might seem quaint or just "nice", but both sides of my family have extreme ADHD in the form of complete executive dysfunction. I find it nearly impossible to force myself to do things that I WANT to do, but as soon as someone makes a suggestion I have absolutely no blocker to doing that thing (that I have no interest in doing). Unfortunately this effect doesn't counter my executive dysfunction. If I NEED to do something, the suggestion effect doesn't help nearly as much.

I believe this syndrome may be related to some weird form of ADHD that my family carries but that's entirely unfounded speculation based on this observation and how much overlap there is between many of our symptoms and symptoms found in standard Neurodivergences like ADHD and Autism.

The much funnier aspect of this syndrome is that my entire family, without coordination, has taught our significant others to warn us when they do something like pop a champagne cork, or open one of those Pillsbury crescent roll containers, and we have extreme aversions and startle responses when those two specific sound events are concerned. It's funny every time.


there is an open landfill near-by. communities in the finger lakes new york region have histories of "mystery illness" that correlate to landfill ground plume

Is there any actual evidence that this is a novel brain disease? Or is it an assortment of FND, dementia, Alzheimers and Parkinson's at the same levels seen elsewhere? From my understanding, it seems to be the latter, and has been blown up out of all proportion because people are worried that it might be something else. However, they have done a lot of research on these cases and not found anything abnormal.

We can certainly see the worry, even in all the comments here speculating about various causes.


Many of the patients are young (the youngest ones are teens), and in some cases it's happening to several members of the same family around the same time. The doctor who raised the alarm here does not come across as alarmist, and it's being taken seriously. It also seems too homogenous (hits women and men, young and old equally) to be chance.

FND checks all those boxes and is the most common neurology diagnosis.

Vaguely-similar symptoms: Hollinwell Incident https://www.bbc.com/news/uk-england-nottinghamshire-61551003

The key, I think, would be to gather blood, tissue, air, soil, water, and food samples to rule out simpler environmental causes.


The link between BMAA and neurodegenerative diseases is well established. New Brunswick has huge BMAA problems. The fishing and aquaculture industry is alleged to suppress the BMAA theory, because less people would buy and eat New Brunswick lobster and fish.

This has been studied, and multiple times concluded that there is no mystery brain disease. This is all based upon one doctor's very shoddy investigation based almost entirely on supposition, and for the media to keep treating it credulously is absurd clickbaiting.

my current favourite theory is glyphosate promotes blue-green algae growth, which creates a neurotoxin

This has got to be either a prion (from animal and/or soil) or a natural chemical neurotoxin (from seafood or other food).

This has been going on for a long while, so I associate it with an ongoing coverup of the facts that are too dangerous to disclose.


> That are too dangerous to disclose

"All beings in the universe are different. Humans are so dumb that they think heart disease is the leading cause of death, when in fact it's the almond milk... not even the gray's touch the stuff."

- Resident Alien (TV Show), "Homesick".

Jokes meant to impart some brief levity aside, Until there is a serious amount of independent resources put towards a study of this, I don't think anyone is going to find out what's causing this.


The government should provide data on this.

There is very little information in the story.


The govt has provided a lot of info/data, but is just a random news story. See here:

https://www2.gnb.ca/content/gnb/en/departments/health/neuro-...


I am still stunned how eager they were to ignore this problem.

Seems like an unidentified virus could be the cause?

It is unlikely. The samples collected would be checked for fragments.

Most likely its something novel that's been thawing out from climate change.

That or a unique modified form of an existing chemical, or something else that hasn't been considered. There's some real fringe stuff out there in chemistry that open a whole can of what-ifs, that mainstream science might scoff at and not study seriously.

Something like this might be the cause, albeit very unlikely, still there are things stranger than fiction.

Spitballing here, Water has Memory, where an EM, or NQR signal of extremely dilute substance or dissolved chemical can cause certain unnatural forms of molecules to stabilize in aqueous solutions, or alternatively impart its effects because water mimics the nature of the dissolved substance for a time at higher concentrations than may be detectable.

There were a number of scientists looking into these anomalies, including a Nobel laureate, but they were all largely discredited without rational basis or support by those doing the discrediting.


> It is unlikely. The samples collected would be checked for fragments.

It is not straightforward to identify a new virus that is not closely related to known human viruses. You cannot just “check for it.” It is largely an unsolved problem, and there are likely a huge number of common viruses that frequently infect humans that still remain undiscovered. When we sequence real world DNA and RNA there is a whole bunch of mysterious stuff that is unexplained, and may include many undiscovered viruses, and bacteria.

I don't agree about the rest of the stuff you mentioned. In fact, there are academics actively studying things like what you mentioned- including Gerald Pollack at UW, but the reality of these phenomenon are more complex than the popular conspiracy theory level explanations imply, and there is no reason to think they lead to things like what you are claiming. Look here: https://www.pollacklab.org/

I used to feel the same about science unfairly rejecting fringe ideas, and that was part of my motivation to become a scientist... but after becoming one I found it is mostly not true. Plenty of scientists openly study and consider stuff like this and are not "discredited" - the reality is a bit more mundane, that the conspiracy theory versions of these stories are just lacking so much nuance that they have little to no relation to the actual research.

You can see from Pollacks' website above that he has a big problem with fraudulent products using his name and likeness to claim some medical benefit, which neither he or his research actually support.


> You cannot just "check for it"...

I had read and heard that many places had started using preliminary tools like Lucaprot that scan viral dark matter retrieved using nano-pore sequencers to identify the sequences and common secondary structures of proteins which all viruses need to replicate, to automate detection of new viruses. Is this not widespread?

I'm aware of Pollack's research, but as you said he's suffered reputational harm which started when he began that research. The stories surrounding Luc Montagnier and Benviste, were pretty poorly handled, and they both were somewhat discredited for merely pointing out undiscovered anomalies that merited further investigation.

Nature sent their hatchet man James Randi, who has been known for discrediting people, sometimes without sound basis especially in cases where the underlying mechanism is not understood.

There is something to be said that When you suddenly can't get any funding because you published something which no one else had found in a methodological scientific way, that could be duplicated; that tends to gives teeth to those calling something conspiracy theory, where it seems more like a conspiracy practice.

Every little quirk we find, can potentially be used in an engineered solution to get to some amazing outcome not previously considered. Quantum dot based technologies are an example of this, from what I've read with regards to their history.


Yes, that is the process basically for new virus discovery- sequencing and then looking for similarity to known viral sequences. That is still an expensive and time consuming research project, and it fails if the virus is too different to identify any sequence homology. We still find a lot of DNA and RNA we can’t make any sense of in almost every sequencing experiment- there’s a ton of stuff out there undiscovered and unexplained. I suspect a lot of currently mysterious diseases and health problems may have viral origins.

That’s why I’m saying we can’t rule out a virus here easily- not until some other cause is proven.

You can also have more complex mechanisms that also involve a virus plus generic or environmental factors- for example the recent finding that implicates HSV in Alzheimers, despite the fact that most people with the virus still never get Alzheimers.


I wasn't aware of that tidbit with HSV and Alzheimer's, always nice to learn something new. Thanks for mentioning this.

Water has no memory, this is pseudoscience that leads to directly homeopathy. Homeopathy is not a medecine it's a religion!

A lot of those claims about water physics used to market homeopathy are based on real experimental observations- see the link in my other reply, water really does do some strange and complex stuff.

But the problem is that these observations do not actually support the claims of homeopathy at all- the attempt at connecting the two is entirely nonsense. I like to try to be open minded about fringe science and medical ideas... but homeopathy really takes the cake, and is the type of total nonsense that gives the rest of that type of stuff a bad name.


sounds like a contaminant

need to test for heavy metals as well as water contaminants

chronic gingivitis cited as a symptom. oral should not be ruled out

prions

Me thinks it sounds possible from the described symptoms, but there are plenty of toxic substances in use with similar effects.

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In Canada?

  Eschew flamebait. Avoid generic tangents. Omit internet tropes.

Some areas have a strong familial tree. Even with new blood over 100+ years, some genes may be dominant.

I wonder if it's that, plus the environmental factor. A mutated gene, dominant, always passed on, making the population susceptible.


That is not how a dominant trait in genetics works- it means you only need one copy to express the phenotype, but it is no more likely to be passed on than any other genetic trait.

It is possible to have a trait that occurs with high frequency in a population- so that almost everyone has 2 copies of it.




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