7 ms·

A battle over Canada’s mystery brain disease

195 points by lewww 9mo ago

alephnerd 9mo ago
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-email-leak-new-brunswick-mystery-illness https://www.theguardian.com/world/article/2024/jun/03/canada... [1] - https://www.theglobeandmail.com/politics/article-minister-leblanc-stayed-over-at-irving-patriarchs-home-after-christmas/ https://www.theglobeandmail.com/politics/article-minister-le... [2] - https://nsadvocate.org/2020/09/15/big-win-for-the-irvings-in-new-brunswick/ https://nsadvocate.org/2020/09/15/big-win-for-the-irvings-in... [3] - https://www.cbc.ca/news/canada/new-brunswick/pcs-criticized-for-irving-friendly-policies-1.1103052 https://www.cbc.ca/news/canada/new-brunswick/pcs-criticized-... [4] - https://www.nytimes.com/2024/08/14/magazine/canada-brain-disease-dementia.html https://www.nytimes.com/2024/08/14/magazine/canada-brain-dis... [5] - https://www.nytimes.com/2025/04/01/world/canada/irving-family-canada-oil-environment.html https://www.nytimes.com/2025/04/01/world/canada/irving-famil...
- dyauspitr 9mo ago
  If it was glyphosates, this would be a much more widespread problem. Roundup/glyphosates are used extensively all across the US and we would be seeing similar statistics everywhere.
  - tptacek 9mo ago
    Also it's "glyphosate", right? Not "glyphosates". It's not like some weird class of industrial chemicals; it's a specific herbicide, used since 1975, more commonly known as Roundup, notable because Monsanto owns patents on genetically-modified crops that are resistant to it.
    - culi 9mo ago
      They're probably referring to the different salts (isopropylamine (IPA), potassium, or diammonium) which can greatly affect absorption and effectiveness
      - tptacek 9mo ago
        Roundup is IPA, Touchdown is DAM. Both extremely common.
        culi 9mo ago
        Yeah both glyphosate. But the doctor in the OP explicitly pointed out that they had increased levels of glyphosate in their blood: > He also warned that some patients' blood work showed elevated levels for compounds found in herbicides such as glyphosate, and said more testing should be done to rule out environmental toxins, including the neurotoxin BMAA, which is produced by blue-green algae. https://www.cbc.ca/news/canada/new-brunswick/new-brunswick-neurologist-patients-public-health-canada-review-files-alier-marrero-1.6933797 https://www.cbc.ca/news/canada/new-brunswick/new-brunswick-n... Just because glyphosate is everywhere doesn't mean it can't be concentrated in a particular place. To be clear I'm not taking a stand for the glyphosate argument at all. I just don't think your line of reasoning is a fair counterargument in this case
        0xbadcafebee 9mo ago
        They would need to have been ingesting or breathing the glyphosate pretty recent to their blood draw. It doesn't absorb easily into skin, and it passes through you quickly. And if you do get a concentrated dose, you get nausea, vomiting, respiratory issues (if inhaled). It's a weird thing to be the culprit, since it's hard to get, and doesn't cause many issues. And it's weird to mention at all, since he says only "a few people" had elevated levels of it. "Melissa Nicholson said her 59-year-old mother, who has suffered for four years with a neurological disorder, received test results indicating she had levels of glyphosate in her body that were 47 times higher than the acceptable level." This is bizarre. Either she lives right next to a farm that's spraying it, and she's getting it blown into an open window in her house where she's breathing it, and then immediately went for a blood test... or she's somehow ingesting it in/around her house (like from a bottle of Roundup that keeps getting splashed on something she's ingesting).
  - alephnerd 9mo ago
    The region in NB where this issue is occurring is the hub for NB's and North America's forestry industry. Over 40% of all harvested forest land in NB is treated with glyphosate [0]. Commercial forestry at JD Irving's scale largely died out in much of the US excluding Maine (where it is also has inordinate political power [1][2]). [0] - https://www.conservationcouncil.ca/wp-content/uploads/2019/05/Glyphosate-fact-sheet.pdf https://www.conservationcouncil.ca/wp-content/uploads/2019/0... [1] - https://themainemonitor.org/maines-future-with-irving/ https://themainemonitor.org/maines-future-with-irving/ [2] - https://mainebiz.biz/article/the-irving-influence-a-look-at-the-powerful-canadian-family-that-recently-expressed/ https://mainebiz.biz/article/the-irving-influence-a-look-at-...
    - tptacek 9mo ago
      Glyphosate, not "glyphosates". Roundup. It's used everywhere. It's an extremely widely used herbicide.
      - alephnerd 9mo ago
        Yes, but almost the entire cluster of the NB cases are around Caraquet NB, which is completely surrounded by softwood plantations, and this has been a case they have been fighting for years. Additionally, Industrial scale lumber harvesting uses magnitudes more Glyphosate than a home gardener or your local HOA.
        tptacek 9mo ago
        I don't doubt something specific is going on there, but it's unlikely it's Roundup, since every suburb in North America is carpet-bombed with the stuff.
        ljf 9mo ago
        While other areas might receive high doses, I'd wonder if there is a link here to the amount of salmon and deer the people there eat, that itself consumed exposed plants or lived in exposed water, compared to the rest of the country? Or the impacts on aquifers?
  - AmbroseBierce 9mo ago
    You are assuming a simple direct causation, instead it could be a reaction of glyphosate with something else in their bodies that they have inhaled from the air (or from their food), perhaps a heavy metal (given those are mentioned in TFA)
    - alephnerd 9mo ago
      The Irving family also has a near monopoly on oil refining, trucking, and other high polluting industries in NB and Maine.
- Sevrene 9mo ago
  >untouchable due to Canada's parliamentary nature. This is an odd sentence to me, I assume there’s some reasoning under there that makes sense to the writer, but it doesn’t follow to me. It feels ‘just so’ to me, like there more to this than simply they can’t do anything because parliament.
  - alephnerd 9mo ago
    Margins in the House of Commons have been paper thin for decades, and this gives inordinate power for MPs to threaten a no-confidence motion behind closed doors. In a province like NB where most politicians from both parties either solicits donations from Irving or are former Irving careerists(eg. the former Premier Higgs who was Irving's CFO), it gives Irving's leadership an inordinate amount of power. My relative who owns a construction business would do something similar in Punjabi heavy ridings in BC as well - he's become fairly prominent in the Gurdawara and Mandir circuit, and because most older Punjabi Canadian voters don't really follow English language news (and in some cases cannot even speak English), they tend to defer to the candidate and party that the Gurdawara or Mandir committee makes a hukumnama for. In ridings across much of BC, there are enough of these kinds of Punjabi voters (Sikh and Hindu) that MPs will try to co-opt these committees to become their de facto enforcers for the community. Eric Adams in NYC used similar immigrant machine politics which landed him on the FBI radar, because the old country's intel organizations continue to monitor their diasporas, and oftentimes leverage them tactically, which led him to being caught in the dragnet due to two separate investigations into Turkish [0] and Chinese [1] influence ops in NYC. [0] - https://www.nytimes.com/2023/11/02/nyregion/eric-adams-brianna-suggs-fbi-raid.html https://www.nytimes.com/2023/11/02/nyregion/eric-adams-brian... [1] - https://www.nytimes.com/2025/03/18/nyregion/adams-china-campaign-corruption.html https://www.nytimes.com/2025/03/18/nyregion/adams-china-camp...
    - Sevrene 9mo ago
      It feels like now you're saying it's not because it's parliament's nature to be like this, but rather these other factors that occure within parliaments and other systems? Can't you unelect the MPs? Doesn't the paper thin margins increase those odds? Honestly, it doesn't sound like the issue is a parliamentry system, but rather people either aren't aware of the issues (media), or have decided (wrongly or rightly) not to care. Either way I still don't get how that's the parliamentry nature as much as it's the people's. That's kind of the point of these systems. I don't know enough about Candaian Punjabi dispora to comment about the other stuff.
- culi 9mo ago
  The doctor in question here explicitly pointed out increased levels of glyphosate in their blood: > He also warned that some patients' blood work showed elevated levels for compounds found in herbicides such as glyphosate, and said more testing should be done to rule out environmental toxins, including the neurotoxin BMAA, which is produced by blue-green algae. https://www.cbc.ca/news/canada/new-brunswick/new-brunswick-neurologist-patients-public-health-canada-review-files-alier-marrero-1.6933797 https://www.cbc.ca/news/canada/new-brunswick/new-brunswick-n...
octoberfranklin 9mo ago
[flagged]
mitchbob 9mo ago
https://archive.ph/nItn1 https://archive.ph/nItn1
_zagj 9mo ago
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.
- ggm 9mo ago
  Joni Mitchell for one of the most famous sufferers
  - _zagj 9mo ago
    Billy Koch, the MLB reliver who played for the A's and the Jays, was the one I remembered.
- jjmarr 9mo ago
  This disease is different because its main symptom is dementia.
  - _zagj 9mo ago
    Do you really think there being a mass hysteria component to this, especially in the age of TikTok, doesn't warrant serious consideration? Your alarm bells didn't go off when you saw the photos and read the profiles of some of these people, especially the 18yo who supposedly needs a wheelchair and a cane? > Cormier has featured heavily in the media coverage of the cluster, becoming a kind of poster child for the mystery disease. She was first referred to Marrero at just 18. A high school student, dancer and competitive figure skater, she had begun to experience fatigue-like symptoms and muscle soreness and then passed out at school. > Cormier was already taking anti-anxiety medication, and the hospital emergency room doctor told her the incident was anxiety-induced. The other young person woman contemplating MAiD is especially tragic. Hopefully the doctors do not enable her.
ggm 9mo ago
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.
- closewith 9mo ago
  What did ME and what post covid syndrome show?
  - ggm 9mo ago
    The NIH/RECOVER programme and equivalents worldwide provide a path to treatment for ME/CFS. Prior to covid, substantive funding for ME research was too small to explore disease pathways and diagnostics. Many ME sufferers were told their disease was solely treatable with CBT, and lacked aetiology. Basically, they were denied any validation of having a disease. The NB thing, right now is "no common cause" and probably would stay there, but the patients deserve some basic respect and their concerns should be acknowledged. Handling small cohorts is hard. A lot of public health funding could be wasted but then things like prion disease, AGS emerge. Tick Bourne diseases in Australia receive short shrift because "they have never been seen here" but there is no domestic testing regime, it's expensive, and treatment (long term antibiotics) run counter to general views on risk/reward issues. I'm not a health professional. I have a lot of respect for public health and epidemiology, the corner cases interest me. For ME, covid provided "evidence" which public health could use. Maybe for the NB thing something similar will emerge. I don't think Morgellens is going to turn out to be in the same bucket, I do think this is a socially acquired mental illness but perhaps I am unfair?
    - whimsicalism 9mo ago
      What you are stating is considerably more controversial among medical researchers than you claim. I find HN tends towards these sort of views.
krautburglar 9mo ago
Anyone have a link to the JAMA paper?
zug_zug 9mo ago
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.
- diwank 9mo ago
  yeah I agree. this is really unfortunate because it seems that there is something systemic here at play which has become twisted up in a cult of personality and that's made a rigorous scientific investigation very difficult
cperciva 9mo ago
The only common factor between these patients is Dr. Marrero.
- SanjayMehta 9mo ago
  [flagged]
- graeme 9mo ago
  Hadn't heard that angle, found this article worth a read. Apparently few patients had a second evaluation. https://ici.radio-canada.ca/nouvelle/2165181/allier-marrero-maladie-neurologique-enquete https://ici.radio-canada.ca/nouvelle/2165181/allier-marrero-...
- culi 9mo ago
  It was a number of doctors that were baffled by their patients that referred them to Marrero. Besdies, he's not the only one convinced there's an environmental factor at play: > In an October 2023 email exchange with another PHAC member, Coulthart, who served as the federal lead in the 2021 investigation into the New Brunswick illness, said he had been “essentially cut off” from any involvement in the issue, adding he believed the reason was political. > Coulthart, a veteran scientist who currently heads Canada’s Creutzfeldt-Jakob Disease Surveillance System, did not respond to a request for comment by the Guardian. But in the leaked email, he wrote that he believes an “environmental exposure – or a combination of exposures – is triggering and/or accelerating a variety of neurodegenerative syndromes” with people seemingly susceptible to different protein-misfolding ailments, including Alzheimer’s disease and Parkinson’s disease. > Coulthart argues this phenomenon does not easily fit within “shallow paradigms” of diagnostic pathology and the complexity of the issue has given politicians a “loophole” to conclude “nothing coherent” is going on. https://www.theguardian.com/world/article/2024/jun/03/canada-email-leak-new-brunswick-mystery-illness https://www.theguardian.com/world/article/2024/jun/03/canada...
- jacquesm 9mo ago
  And the general area they live in.
yyyk 9mo ago
Compare to Havana syndrome - another disputed 'mystery brain disease'.
- culi 9mo ago
  CHUPPL did a deep dive on this one I highly recommend https://www.youtube.com/watch?v=xqE0ltifQ2M https://www.youtube.com/watch?v=xqE0ltifQ2M
- whimsicalism 9mo ago
  functional disorders like ME, CFS, Havana syndrome, chronic lyme are very common, particularly since the emergence of patient communities enabled by the internet.
CAP_NET_ADMIN 9mo ago
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.
deleted 9mo ago
[deleted]
gametorch 9mo ago
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.
throwaway_9879 9mo ago
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-disorder/symptoms-causes/syc-20355197 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.
- deleted 9mo ago
  [deleted]
- enceladus06 9mo ago
  Right, but what is causing the functional neurological disorder? Speaking as someone who has had alot of of chronic pain [CPPS] there is some sort of neuro issue going on but we don't know what it is. But "dementia, weight loss, unsteadiness, jerking movements and facial twitches" does seem like more than just neuro?
  - culi 9mo ago
    Well it depends if you believe the report or the doctor: > In an October 2023 email exchange with another PHAC member, Coulthart, who served as the federal lead in the 2021 investigation into the New Brunswick illness, said he had been “essentially cut off” from any involvement in the issue, adding he believed the reason was political. > Coulthart, a veteran scientist who currently heads Canada’s Creutzfeldt-Jakob Disease Surveillance System, did not respond to a request for comment by the Guardian. But in the leaked email, he wrote that he believes an “environmental exposure – or a combination of exposures – is triggering and/or accelerating a variety of neurodegenerative syndromes” with people seemingly susceptible to different protein-misfolding ailments, including Alzheimer’s disease and Parkinson’s disease. > Coulthart argues this phenomenon does not easily fit within “shallow paradigms” of diagnostic pathology and the complexity of the issue has given politicians a “loophole” to conclude “nothing coherent” is going on. > Coulthart’s email emerged more than a year after Marrero pleaded with the Canadian government to carry out environmental testing he believed would show the involvement of glyphosate. https://www.theguardian.com/world/article/2024/jun/03/canada-email-leak-new-brunswick-mystery-illness https://www.theguardian.com/world/article/2024/jun/03/canada...
hedayet 9mo ago
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.
- whatsupdog 9mo ago
  How many COVID shots did you get? I noticed my resting heart rate go up after the first one. So I never got another one.
  - nucleardog 9mo ago
    When your immune system activity increases, generally so does your heart rate. It's fairly common to get sick and have an increased heart rate. A quick search for "heart rate when sick" will turn up a number of results explaining this, the mechanisms behind it, and more. Sorry you missed out on simple, effective preventative health measures because of this misunderstanding.
    - whatsupdog 9mo ago
      It lasted over 6 months. My resting heart rate has been 52 for over 2 decades. Months after the shot it was up to 75 and stayed there for over 6 months. Slowly crept back to 52.
  - Retz4o4 9mo ago
    Or Covid itself.
  - konschubert 9mo ago
    An immune response to any trigger temporarily increases the heart rate.
zoeysmithe 9mo ago
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.
- whimsicalism 9mo ago
  MAID for an FND is crazy, i hope Canada is not so ridiculous
pash 9mo ago
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. 0. https://en.wikipedia.org/wiki/Prion_disease https://en.wikipedia.org/wiki/Prion_disease
- defrost 9mo ago
  If you've not seen it Kuru: The Science and The Sorcery is an interesting documentary of Mike Alpers time in PNG * https://www.youtube.com/watch?v=NJrD1JcmUiE https://www.youtube.com/watch?v=NJrD1JcmUiE * https://en.wikipedia.org/wiki/Michael_Alpers https://en.wikipedia.org/wiki/Michael_Alpers * https://stmarkscollege.com.au/news/remembering-professor-michael-alpers-ao-distinguished-collegian-and-pioneering-medical-scientist/ https://stmarkscollege.com.au/news/remembering-professor-mic... As a small person in the 1960s / 1970s I'd go along with my aunts on supply runs to PNG for him and others, I met his family in Perth in the early 1980s
OutOfHere 9mo ago
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.
- jacquesm 9mo ago
  It it's a prion disease they won't get better period.
  - deleted 9mo ago
    [deleted]
  - OutOfHere 9mo ago
    There is an experimental existing drug combo of trimipramine+fluphenazine that might help prion disease but it won't cure it: https://medicalxpress.com/news/2011-09-screen-antidepressant-drugs-possibility-brain-wasting.html https://medicalxpress.com/news/2011-09-screen-antidepressant.... The corresponding paper is https://pubmed.ncbi.nlm.nih.gov/21931860/ https://pubmed.ncbi.nlm.nih.gov/21931860/ The Canadian government looks to have both failed and abandoned its people. It could have tested them, profiled the disease, understood its cause, and tried treatments, but it looks to just not care. In the simple case, if it's just a neurotoxin, it might show signs of getting better upon moving out.
oefrha 9mo ago
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.
- atombender 9mo ago
  The article describes one patient getting multiple treatments, none of which worked.
devmor 9mo ago
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.
- OutOfHere 9mo ago
  The doctor is a distraction that keeps tripping up everyone here. Once the real cause is discovered, he will move on. If a real cause is not discovered, it's probably due to an insufficient investigation, in which case the investigation should continue.
  - devmor 9mo ago
    That's the problem, though. There was an in-depth investigation planned, thanks in part to that doctor. It was then cancelled by the officials in charge, with the excuse that the doctor's work was improperly conducted. That action with that excuse was arguably more harmful than anything else in this entire story.
    - OutOfHere 9mo ago
      If not that excuse, they would have come up with another excuse to not investigate. What we are missing is the reasons behind the coverup.
      - 9mo ago
matsemann 9mo ago
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?
- oezi 9mo ago
  The prevalence question isn't really answered in the article. If it is 500 cases in an area in which 1m people live then it might not really be a cluster. But if it is 500 cases out of a town of 40000 then it is quite something different.
  - nubinetwork 9mo ago
    The entire province only has a population of 800-900k
maximgeorge 9mo ago
[dead]
0xbadcafebee 9mo ago
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.
- Ylpertnodi 9mo ago
  > But the cause is clearly no physical thing in the environment. And you're 100% sure on that?
- sd8f9iu 9mo ago
  That's not what the article says. Patients actually died, which doesn't make sense for hysteria. The study found the patients have existing known conditions, which are being mis-diagnosed by this doctor as a mystery illness. It sounds more like malpractice to me.
patcon 9mo ago
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)
- Kina 9mo ago
  The Family That Owns New Brunswick: The House of Irving: https://www.youtube.com/watch?v=N9I-HY3wfVM https://www.youtube.com/watch?v=N9I-HY3wfVM
- subpixel 9mo ago
  After reading about the mysterious firing and payoff of glysophate studying scientists it seems obvious what stone is going unturned here.
  - gopher_space 9mo ago
    I mean look at the number of industry apologists in this thread alone. Strikingly similar to the reaction around cancer clusters, including the witch doctors who still think “mass hysteria” is a thing. It’s not always environmental, but it’s usually environmental and weird to not start with that assumption.
timwalz 9mo ago
[flagged]
- greggoB 9mo ago
  Elaborate?
nickhodge 9mo ago
FND == neurologist gaslighting the patient. Formerly known as hysteria.
- whimsicalism 9mo ago
  FND is a useful label because it helps provide clarity, feeling of responsiveness, and direction towards effective treatments like CBT, rather than calling a patient experiencing real discomfort/disability ‘hysterical’. i do think we have to think hard about how we want to deal with the rapid expansion of FNDs and social contagion.
unsupp0rted 9mo ago
> "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?
wormx99 9mo ago
[dead]
BenoitEssiambre 9mo ago
I know doctors who've worked with Marrero and they seem to be split in their opinion. They seem to agree he tends to be "excessively thorough", frequently sending tests to labs across the world. This makes him liked by desperate patients with potentially incurable diseases who want someone to "do something". They are split on whether his thoroughness is just fueling false hopes and sending patients down unnecessary rabbit holes or if he could have potentially identified a real issue.
kravossedonna 9mo ago
I was diagnosed with Parkinson's disease a year ago at the age of 67. For several months I had noticed tremors in my right hand and the shaking of my right foot when I was sitting. My normally beautiful cursive writing was now small, cramped printing. And I tended to lose my balance. The neurologist had me walk down the hall and said I didn't swing my right arm. I had never noticed! I was in denial for a while, as there is no history in my family of parents and five older siblings, but I had to accept I had classic symptoms. I was taking amantadine and carbidopa/levodopa and was about to start physical therapy to strengthen muscles. I used different supplements that didn't work, so last July, I tried the PD-5 protocol—the best decision ever! My tremors eased, my energy returned, and I sleep soundly. I feel like a new woman, and I can walk and exercise again. I got the PD-5 from limitlesshealthcenter. com

195 points by lewww 9mo ago

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-email-leak-new-brunswick-mystery-illness https://www.theguardian.com/world/article/2024/jun/03/canada... [1] - https://www.theglobeandmail.com/politics/article-minister-leblanc-stayed-over-at-irving-patriarchs-home-after-christmas/ https://www.theglobeandmail.com/politics/article-minister-le... [2] - https://nsadvocate.org/2020/09/15/big-win-for-the-irvings-in-new-brunswick/ https://nsadvocate.org/2020/09/15/big-win-for-the-irvings-in... [3] - https://www.cbc.ca/news/canada/new-brunswick/pcs-criticized-for-irving-friendly-policies-1.1103052 https://www.cbc.ca/news/canada/new-brunswick/pcs-criticized-... [4] - https://www.nytimes.com/2024/08/14/magazine/canada-brain-disease-dementia.html https://www.nytimes.com/2024/08/14/magazine/canada-brain-dis... [5] - https://www.nytimes.com/2025/04/01/world/canada/irving-family-canada-oil-environment.html https://www.nytimes.com/2025/04/01/world/canada/irving-famil...

dyauspitr 9mo ago
If it was glyphosates, this would be a much more widespread problem. Roundup/glyphosates are used extensively all across the US and we would be seeing similar statistics everywhere.
- tptacek 9mo ago
  Also it's "glyphosate", right? Not "glyphosates". It's not like some weird class of industrial chemicals; it's a specific herbicide, used since 1975, more commonly known as Roundup, notable because Monsanto owns patents on genetically-modified crops that are resistant to it.
  - culi 9mo ago
    They're probably referring to the different salts (isopropylamine (IPA), potassium, or diammonium) which can greatly affect absorption and effectiveness
    - tptacek 9mo ago
      Roundup is IPA, Touchdown is DAM. Both extremely common.
      - culi 9mo ago
        Yeah both glyphosate. But the doctor in the OP explicitly pointed out that they had increased levels of glyphosate in their blood: > He also warned that some patients' blood work showed elevated levels for compounds found in herbicides such as glyphosate, and said more testing should be done to rule out environmental toxins, including the neurotoxin BMAA, which is produced by blue-green algae. https://www.cbc.ca/news/canada/new-brunswick/new-brunswick-neurologist-patients-public-health-canada-review-files-alier-marrero-1.6933797 https://www.cbc.ca/news/canada/new-brunswick/new-brunswick-n... Just because glyphosate is everywhere doesn't mean it can't be concentrated in a particular place. To be clear I'm not taking a stand for the glyphosate argument at all. I just don't think your line of reasoning is a fair counterargument in this case
        0xbadcafebee 9mo ago
        They would need to have been ingesting or breathing the glyphosate pretty recent to their blood draw. It doesn't absorb easily into skin, and it passes through you quickly. And if you do get a concentrated dose, you get nausea, vomiting, respiratory issues (if inhaled). It's a weird thing to be the culprit, since it's hard to get, and doesn't cause many issues. And it's weird to mention at all, since he says only "a few people" had elevated levels of it. "Melissa Nicholson said her 59-year-old mother, who has suffered for four years with a neurological disorder, received test results indicating she had levels of glyphosate in her body that were 47 times higher than the acceptable level." This is bizarre. Either she lives right next to a farm that's spraying it, and she's getting it blown into an open window in her house where she's breathing it, and then immediately went for a blood test... or she's somehow ingesting it in/around her house (like from a bottle of Roundup that keeps getting splashed on something she's ingesting).
- alephnerd 9mo ago
  The region in NB where this issue is occurring is the hub for NB's and North America's forestry industry. Over 40% of all harvested forest land in NB is treated with glyphosate [0]. Commercial forestry at JD Irving's scale largely died out in much of the US excluding Maine (where it is also has inordinate political power [1][2]). [0] - https://www.conservationcouncil.ca/wp-content/uploads/2019/05/Glyphosate-fact-sheet.pdf https://www.conservationcouncil.ca/wp-content/uploads/2019/0... [1] - https://themainemonitor.org/maines-future-with-irving/ https://themainemonitor.org/maines-future-with-irving/ [2] - https://mainebiz.biz/article/the-irving-influence-a-look-at-the-powerful-canadian-family-that-recently-expressed/ https://mainebiz.biz/article/the-irving-influence-a-look-at-...
  - tptacek 9mo ago
    Glyphosate, not "glyphosates". Roundup. It's used everywhere. It's an extremely widely used herbicide.
    - alephnerd 9mo ago
      Yes, but almost the entire cluster of the NB cases are around Caraquet NB, which is completely surrounded by softwood plantations, and this has been a case they have been fighting for years. Additionally, Industrial scale lumber harvesting uses magnitudes more Glyphosate than a home gardener or your local HOA.
      - tptacek 9mo ago
        I don't doubt something specific is going on there, but it's unlikely it's Roundup, since every suburb in North America is carpet-bombed with the stuff.
        ljf 9mo ago
        While other areas might receive high doses, I'd wonder if there is a link here to the amount of salmon and deer the people there eat, that itself consumed exposed plants or lived in exposed water, compared to the rest of the country? Or the impacts on aquifers?
- AmbroseBierce 9mo ago
  You are assuming a simple direct causation, instead it could be a reaction of glyphosate with something else in their bodies that they have inhaled from the air (or from their food), perhaps a heavy metal (given those are mentioned in TFA)
  - alephnerd 9mo ago
    The Irving family also has a near monopoly on oil refining, trucking, and other high polluting industries in NB and Maine.
Sevrene 9mo ago
>untouchable due to Canada's parliamentary nature. This is an odd sentence to me, I assume there’s some reasoning under there that makes sense to the writer, but it doesn’t follow to me. It feels ‘just so’ to me, like there more to this than simply they can’t do anything because parliament.
- alephnerd 9mo ago
  Margins in the House of Commons have been paper thin for decades, and this gives inordinate power for MPs to threaten a no-confidence motion behind closed doors. In a province like NB where most politicians from both parties either solicits donations from Irving or are former Irving careerists(eg. the former Premier Higgs who was Irving's CFO), it gives Irving's leadership an inordinate amount of power. My relative who owns a construction business would do something similar in Punjabi heavy ridings in BC as well - he's become fairly prominent in the Gurdawara and Mandir circuit, and because most older Punjabi Canadian voters don't really follow English language news (and in some cases cannot even speak English), they tend to defer to the candidate and party that the Gurdawara or Mandir committee makes a hukumnama for. In ridings across much of BC, there are enough of these kinds of Punjabi voters (Sikh and Hindu) that MPs will try to co-opt these committees to become their de facto enforcers for the community. Eric Adams in NYC used similar immigrant machine politics which landed him on the FBI radar, because the old country's intel organizations continue to monitor their diasporas, and oftentimes leverage them tactically, which led him to being caught in the dragnet due to two separate investigations into Turkish [0] and Chinese [1] influence ops in NYC. [0] - https://www.nytimes.com/2023/11/02/nyregion/eric-adams-brianna-suggs-fbi-raid.html https://www.nytimes.com/2023/11/02/nyregion/eric-adams-brian... [1] - https://www.nytimes.com/2025/03/18/nyregion/adams-china-campaign-corruption.html https://www.nytimes.com/2025/03/18/nyregion/adams-china-camp...
  - Sevrene 9mo ago
    It feels like now you're saying it's not because it's parliament's nature to be like this, but rather these other factors that occure within parliaments and other systems? Can't you unelect the MPs? Doesn't the paper thin margins increase those odds? Honestly, it doesn't sound like the issue is a parliamentry system, but rather people either aren't aware of the issues (media), or have decided (wrongly or rightly) not to care. Either way I still don't get how that's the parliamentry nature as much as it's the people's. That's kind of the point of these systems. I don't know enough about Candaian Punjabi dispora to comment about the other stuff.
culi 9mo ago
The doctor in question here explicitly pointed out increased levels of glyphosate in their blood: > He also warned that some patients' blood work showed elevated levels for compounds found in herbicides such as glyphosate, and said more testing should be done to rule out environmental toxins, including the neurotoxin BMAA, which is produced by blue-green algae. https://www.cbc.ca/news/canada/new-brunswick/new-brunswick-neurologist-patients-public-health-canada-review-files-alier-marrero-1.6933797 https://www.cbc.ca/news/canada/new-brunswick/new-brunswick-n...

octoberfranklin 9mo ago

[flagged]

mitchbob 9mo ago

https://archive.ph/nItn1 https://archive.ph/nItn1

_zagj 9mo ago

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.

ggm 9mo ago
Joni Mitchell for one of the most famous sufferers
- _zagj 9mo ago
  Billy Koch, the MLB reliver who played for the A's and the Jays, was the one I remembered.
jjmarr 9mo ago
This disease is different because its main symptom is dementia.
- _zagj 9mo ago
  Do you really think there being a mass hysteria component to this, especially in the age of TikTok, doesn't warrant serious consideration? Your alarm bells didn't go off when you saw the photos and read the profiles of some of these people, especially the 18yo who supposedly needs a wheelchair and a cane? > Cormier has featured heavily in the media coverage of the cluster, becoming a kind of poster child for the mystery disease. She was first referred to Marrero at just 18. A high school student, dancer and competitive figure skater, she had begun to experience fatigue-like symptoms and muscle soreness and then passed out at school. > Cormier was already taking anti-anxiety medication, and the hospital emergency room doctor told her the incident was anxiety-induced. The other young person woman contemplating MAiD is especially tragic. Hopefully the doctors do not enable her.

ggm 9mo ago

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.

closewith 9mo ago
What did ME and what post covid syndrome show?
- ggm 9mo ago
  The NIH/RECOVER programme and equivalents worldwide provide a path to treatment for ME/CFS. Prior to covid, substantive funding for ME research was too small to explore disease pathways and diagnostics. Many ME sufferers were told their disease was solely treatable with CBT, and lacked aetiology. Basically, they were denied any validation of having a disease. The NB thing, right now is "no common cause" and probably would stay there, but the patients deserve some basic respect and their concerns should be acknowledged. Handling small cohorts is hard. A lot of public health funding could be wasted but then things like prion disease, AGS emerge. Tick Bourne diseases in Australia receive short shrift because "they have never been seen here" but there is no domestic testing regime, it's expensive, and treatment (long term antibiotics) run counter to general views on risk/reward issues. I'm not a health professional. I have a lot of respect for public health and epidemiology, the corner cases interest me. For ME, covid provided "evidence" which public health could use. Maybe for the NB thing something similar will emerge. I don't think Morgellens is going to turn out to be in the same bucket, I do think this is a socially acquired mental illness but perhaps I am unfair?
  - whimsicalism 9mo ago
    What you are stating is considerably more controversial among medical researchers than you claim. I find HN tends towards these sort of views.

krautburglar 9mo ago

Anyone have a link to the JAMA paper?

zug_zug 9mo ago

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.

diwank 9mo ago
yeah I agree. this is really unfortunate because it seems that there is something systemic here at play which has become twisted up in a cult of personality and that's made a rigorous scientific investigation very difficult

cperciva 9mo ago

The only common factor between these patients is Dr. Marrero.

SanjayMehta 9mo ago
[flagged]
graeme 9mo ago
Hadn't heard that angle, found this article worth a read. Apparently few patients had a second evaluation. https://ici.radio-canada.ca/nouvelle/2165181/allier-marrero-maladie-neurologique-enquete https://ici.radio-canada.ca/nouvelle/2165181/allier-marrero-...
culi 9mo ago
It was a number of doctors that were baffled by their patients that referred them to Marrero. Besdies, he's not the only one convinced there's an environmental factor at play: > In an October 2023 email exchange with another PHAC member, Coulthart, who served as the federal lead in the 2021 investigation into the New Brunswick illness, said he had been “essentially cut off” from any involvement in the issue, adding he believed the reason was political. > Coulthart, a veteran scientist who currently heads Canada’s Creutzfeldt-Jakob Disease Surveillance System, did not respond to a request for comment by the Guardian. But in the leaked email, he wrote that he believes an “environmental exposure – or a combination of exposures – is triggering and/or accelerating a variety of neurodegenerative syndromes” with people seemingly susceptible to different protein-misfolding ailments, including Alzheimer’s disease and Parkinson’s disease. > Coulthart argues this phenomenon does not easily fit within “shallow paradigms” of diagnostic pathology and the complexity of the issue has given politicians a “loophole” to conclude “nothing coherent” is going on. https://www.theguardian.com/world/article/2024/jun/03/canada-email-leak-new-brunswick-mystery-illness https://www.theguardian.com/world/article/2024/jun/03/canada...
jacquesm 9mo ago
And the general area they live in.

yyyk 9mo ago

Compare to Havana syndrome - another disputed 'mystery brain disease'.

culi 9mo ago
CHUPPL did a deep dive on this one I highly recommend https://www.youtube.com/watch?v=xqE0ltifQ2M https://www.youtube.com/watch?v=xqE0ltifQ2M
whimsicalism 9mo ago
functional disorders like ME, CFS, Havana syndrome, chronic lyme are very common, particularly since the emergence of patient communities enabled by the internet.

CAP_NET_ADMIN 9mo ago

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.

deleted 9mo ago

[deleted]

gametorch 9mo ago

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.

throwaway_9879 9mo ago

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-disorder/symptoms-causes/syc-20355197 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.

deleted 9mo ago
[deleted]
enceladus06 9mo ago
Right, but what is causing the functional neurological disorder? Speaking as someone who has had alot of of chronic pain [CPPS] there is some sort of neuro issue going on but we don't know what it is. But "dementia, weight loss, unsteadiness, jerking movements and facial twitches" does seem like more than just neuro?
- culi 9mo ago
  Well it depends if you believe the report or the doctor: > In an October 2023 email exchange with another PHAC member, Coulthart, who served as the federal lead in the 2021 investigation into the New Brunswick illness, said he had been “essentially cut off” from any involvement in the issue, adding he believed the reason was political. > Coulthart, a veteran scientist who currently heads Canada’s Creutzfeldt-Jakob Disease Surveillance System, did not respond to a request for comment by the Guardian. But in the leaked email, he wrote that he believes an “environmental exposure – or a combination of exposures – is triggering and/or accelerating a variety of neurodegenerative syndromes” with people seemingly susceptible to different protein-misfolding ailments, including Alzheimer’s disease and Parkinson’s disease. > Coulthart argues this phenomenon does not easily fit within “shallow paradigms” of diagnostic pathology and the complexity of the issue has given politicians a “loophole” to conclude “nothing coherent” is going on. > Coulthart’s email emerged more than a year after Marrero pleaded with the Canadian government to carry out environmental testing he believed would show the involvement of glyphosate. https://www.theguardian.com/world/article/2024/jun/03/canada-email-leak-new-brunswick-mystery-illness https://www.theguardian.com/world/article/2024/jun/03/canada...

hedayet 9mo ago

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.

whatsupdog 9mo ago
How many COVID shots did you get? I noticed my resting heart rate go up after the first one. So I never got another one.
- nucleardog 9mo ago
  When your immune system activity increases, generally so does your heart rate. It's fairly common to get sick and have an increased heart rate. A quick search for "heart rate when sick" will turn up a number of results explaining this, the mechanisms behind it, and more. Sorry you missed out on simple, effective preventative health measures because of this misunderstanding.
  - whatsupdog 9mo ago
    It lasted over 6 months. My resting heart rate has been 52 for over 2 decades. Months after the shot it was up to 75 and stayed there for over 6 months. Slowly crept back to 52.
- Retz4o4 9mo ago
  Or Covid itself.
- konschubert 9mo ago
  An immune response to any trigger temporarily increases the heart rate.

zoeysmithe 9mo ago

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.

whimsicalism 9mo ago
MAID for an FND is crazy, i hope Canada is not so ridiculous

pash 9mo ago

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. 0. https://en.wikipedia.org/wiki/Prion_disease https://en.wikipedia.org/wiki/Prion_disease

defrost 9mo ago
If you've not seen it Kuru: The Science and The Sorcery is an interesting documentary of Mike Alpers time in PNG * https://www.youtube.com/watch?v=NJrD1JcmUiE https://www.youtube.com/watch?v=NJrD1JcmUiE * https://en.wikipedia.org/wiki/Michael_Alpers https://en.wikipedia.org/wiki/Michael_Alpers * https://stmarkscollege.com.au/news/remembering-professor-michael-alpers-ao-distinguished-collegian-and-pioneering-medical-scientist/ https://stmarkscollege.com.au/news/remembering-professor-mic... As a small person in the 1960s / 1970s I'd go along with my aunts on supply runs to PNG for him and others, I met his family in Perth in the early 1980s

OutOfHere 9mo ago

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.

jacquesm 9mo ago
It it's a prion disease they won't get better period.
- deleted 9mo ago
  [deleted]
- OutOfHere 9mo ago
  There is an experimental existing drug combo of trimipramine+fluphenazine that might help prion disease but it won't cure it: https://medicalxpress.com/news/2011-09-screen-antidepressant-drugs-possibility-brain-wasting.html https://medicalxpress.com/news/2011-09-screen-antidepressant.... The corresponding paper is https://pubmed.ncbi.nlm.nih.gov/21931860/ https://pubmed.ncbi.nlm.nih.gov/21931860/ The Canadian government looks to have both failed and abandoned its people. It could have tested them, profiled the disease, understood its cause, and tried treatments, but it looks to just not care. In the simple case, if it's just a neurotoxin, it might show signs of getting better upon moving out.

oefrha 9mo ago

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.

atombender 9mo ago
The article describes one patient getting multiple treatments, none of which worked.

devmor 9mo ago

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.

OutOfHere 9mo ago
The doctor is a distraction that keeps tripping up everyone here. Once the real cause is discovered, he will move on. If a real cause is not discovered, it's probably due to an insufficient investigation, in which case the investigation should continue.
- devmor 9mo ago
  That's the problem, though. There was an in-depth investigation planned, thanks in part to that doctor. It was then cancelled by the officials in charge, with the excuse that the doctor's work was improperly conducted. That action with that excuse was arguably more harmful than anything else in this entire story.
  - OutOfHere 9mo ago
    If not that excuse, they would have come up with another excuse to not investigate. What we are missing is the reasons behind the coverup.
    - 9mo ago

matsemann 9mo ago

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?

oezi 9mo ago
The prevalence question isn't really answered in the article. If it is 500 cases in an area in which 1m people live then it might not really be a cluster. But if it is 500 cases out of a town of 40000 then it is quite something different.
- nubinetwork 9mo ago
  The entire province only has a population of 800-900k

maximgeorge 9mo ago

[dead]

0xbadcafebee 9mo ago

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.

Ylpertnodi 9mo ago
> But the cause is clearly no physical thing in the environment. And you're 100% sure on that?
sd8f9iu 9mo ago
That's not what the article says. Patients actually died, which doesn't make sense for hysteria. The study found the patients have existing known conditions, which are being mis-diagnosed by this doctor as a mystery illness. It sounds more like malpractice to me.

patcon 9mo ago

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)

Kina 9mo ago
The Family That Owns New Brunswick: The House of Irving: https://www.youtube.com/watch?v=N9I-HY3wfVM https://www.youtube.com/watch?v=N9I-HY3wfVM
subpixel 9mo ago
After reading about the mysterious firing and payoff of glysophate studying scientists it seems obvious what stone is going unturned here.
- gopher_space 9mo ago
  I mean look at the number of industry apologists in this thread alone. Strikingly similar to the reaction around cancer clusters, including the witch doctors who still think “mass hysteria” is a thing. It’s not always environmental, but it’s usually environmental and weird to not start with that assumption.

timwalz 9mo ago

[flagged]

greggoB 9mo ago
Elaborate?

nickhodge 9mo ago

FND == neurologist gaslighting the patient. Formerly known as hysteria.

whimsicalism 9mo ago
FND is a useful label because it helps provide clarity, feeling of responsiveness, and direction towards effective treatments like CBT, rather than calling a patient experiencing real discomfort/disability ‘hysterical’. i do think we have to think hard about how we want to deal with the rapid expansion of FNDs and social contagion.

unsupp0rted 9mo ago

> "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?

wormx99 9mo ago

[dead]

BenoitEssiambre 9mo ago

I know doctors who've worked with Marrero and they seem to be split in their opinion. They seem to agree he tends to be "excessively thorough", frequently sending tests to labs across the world. This makes him liked by desperate patients with potentially incurable diseases who want someone to "do something". They are split on whether his thoroughness is just fueling false hopes and sending patients down unnecessary rabbit holes or if he could have potentially identified a real issue.

kravossedonna 9mo ago

I was diagnosed with Parkinson's disease a year ago at the age of 67. For several months I had noticed tremors in my right hand and the shaking of my right foot when I was sitting. My normally beautiful cursive writing was now small, cramped printing. And I tended to lose my balance. The neurologist had me walk down the hall and said I didn't swing my right arm. I had never noticed! I was in denial for a while, as there is no history in my family of parents and five older siblings, but I had to accept I had classic symptoms. I was taking amantadine and carbidopa/levodopa and was about to start physical therapy to strengthen muscles. I used different supplements that didn't work, so last July, I tried the PD-5 protocol—the best decision ever! My tremors eased, my energy returned, and I sleep soundly. I feel like a new woman, and I can walk and exercise again. I got the PD-5 from limitlesshealthcenter. com