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)
This was one of the more surprising things to me when I lived in Canada: that there is so much of this. Depending on which region you are in you will either have state monopolies on the strangest things and/or a couple of families that have their fingers in just about every pie. And don't get me started on the telecommunications sector.
I wonder if this is largely a function of geography and population. Do we see similar strange things in countries like Australia, Sweden, etc.? Kind of like a small town effect at the national scale.
The only common factor between these patients is Dr. Marrero. It is notable that he is not the only physician who works in that clinic, but is the only one diagnosing this condition. The most likely cause is weak diagnostic skills for challenging patients.
Unfortunately, a majority of these patients likely have Functional Neurologic Disorder https://www.mayoclinic.org/diseases-conditions/conversion-di... , which is a horrible condition that accounts for a plurality of cases seen by most neurologists. This phantom diagnosis will probably make recovery almost impossible for those people. Acceptance of that diagnosis is the number 1 positive indicator for recovery.
Source: I live in the canadian maritimes, and know many neurologists.
> The committee and the New Brunswick government also cast doubt on the work of neurologist Alier Marrero, who was initially referred dozens of cases by baffled doctors in the region, and subsequently identified more cases. The doctor has since become a fierce advocate for patients he feels have been neglected by the province.
It seems to me that it's doctors reaching out to Marrero. It also seems odd that [these|this] illness(es) disproportionately affected young people.
Another article I just read stated Marrero reached out to get second opinions but was blocked.
> He claims he made arrangements in 2020-21 for "subject-matter experts" to travel to New Brunswick to evaluate patients, but the province "chose not to avail itself of this invaluable expertise."
This guy is probably chasing moonshine, but TBH "functional neurological disorder" sounds like one of those face-saving labels that doctors use when they don't have any idea what's going on.
There are actually specific diagnostic criteria for FND. The BBC article mentions that the young patient showed impairment in voluntary motor behaviors, but not in involuntary behaviors (e.g. reflexes). That is characteristic of FND. Similarly, there are clear ways to distinguish FND seizures from epileptic seizures. It is not a wastebasket diagnosis at all.
It is not meant to save the doctors face. The very definition of FND is "doctors dont know what is wrong, but they acknowledge that your symptoms are real".
The point of giving it a name is in the second part. Its about explicitly acknowledging the limitations of medicine
Which when it leads to abuse it's saving face and when it's incompetence it's saving face.
For a competent doctor it's used too let a patient know they're doing their job and an acknowledgement of symptoms.
Unfortunately to a _lot_ of the field "catch-all" "diagnoses" (in intentionally separating these labels). It's the same as diagnosing someone with chronic fatigue. It's diagnosing via exclusion.
The difference between chronic fatigue and brain disorders being that you're more likely to get someone looking to make a "name for themselves" diagnosing or curing the latter vs the former...
“FND”… I bet they need to exercise, eat a balanced breakfast, sleep more and lower stress.
That’ll definitely pause the rapidly progressing dementia and loss of muscle control in patients in their 20s.
When doctors have no idea what something is and aren’t willing to keep trying diagnostics and interventions, it’s always “hey maybe get some more cardio and go easy on the peanut butter cups”.
To be fair, this is also what I hear from my GP when I have no complaints at all. It’s not bad advice, but I think it’s what most doctors tell patients they deem basically healthy. Nobody gets hurt by eating fewer peanut butter cups and taking the dog for a longer walk.
On one visit to my doctor, where the issue was a sports related injury, my doctor told me to get more exercise. Obviously the advice is parroted so often she just blurted it out without thinking. She knows full well I train regularly and if anything get too much exercise.
It’s strange - I had a heart attack almost eight years ago because of years of neglect and decided to do the opposite. I took it so far that I built an application to track everything I do and how it helps (or keeps me from) reaching my goals.
For the longest time all my data said exercise more. That was expected since I literally didn’t move all the way to a cardiac ward. Then all of a sudden it shifted to ‘exercise less, drink less coffee and sleep much more.’
I understand why doctors fall into that blind spot. It was perfect advice for me for a long time and took a lot of failure (and remarkably bad coping mechanisms) for me to figure out.
Solid MAHA advice right there. Just eat French fries fried in beef tallow, avoid all vaccines, and whatever ails you will surely go away. Medicine isn’t actually that complicated.
/s
It's a diagnosis that's made only after excluding a wide range of other potential causes for the symptoms (like brain damage, structural abnormalities, strokes, seizures, MS, infections, ...).
It's not just a case of "we don't know", it's a case of "we've looked at everything under the sun and nothing fits".
Sounds like one of those things that needs more research.
Saying to a patient "you have X" can communicate three different things:
- a casual diagnosis: your problem is caused by C
- a syndrome: you have this collection of symptoms which often appear together, we don't know what causes it, we may have some treatments that can help.
The difference between these two is often not communicated well, but they are valid diagnostic categories.
There is a bigger problem with the third one:
- we have done some investigation and don't think further investigation is worth doing.
This may be a correct judgment, or it may not. But it is not a property of the patient. Essentialising it to the patient is incorrect and potentially dangerous. Especially as, it's rarely the case that they've "looked at everything under the sun". There are many reasons for stopping before that - some of them valid, but some not.
Yes, but it also sounds like the initial stages of "research" should be taxonomy. Starting with QC'ing current testing & diagnosis standards, to have more confidence that the data is reasonably clean.
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?
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.
Tinnitus is terrible. There are days I'd rather be deaf, but I know a few people that are deaf and realize that that is just my idiot side looking for a quick solution to the problem ignoring the downsides (and I love music). It is so frustrating.
Wait by “nothing” do you mean that there is no cause for the disease that the link you posted says has an unknown cause, or “nothing” do you mean that they don’t actually have anything wrong with them but you’re sharing a neat link about a disease that has an unknown cause?
I normally wouldn’t question an hour old throwaway that knows many neurologists, but what exactly are you applying the word “nothing” to here? You started with one statement, said that you don’t like a guy, and then wrote another statement that negates your first statement.
Like by “nothing” do you mean “I personally do not know, so my knowledge of what is causing this is nothing, but I want to share that I don’t like that one doctor”?
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.
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.
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?
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.
> but rarely nervous tissue of cattle infected with BSE, which is present in Canada more than anywhere else (by a small margin).
I don't think that that's quite right. Over the past 15 years, only 3 cases have been reported in Canadian cattle [0], while Canada has over 12 million cattle at any given moment [1]. This organization claims that Taiwan, Greece, Ecuador, and Russia are all higher-risk [2].
You could certainly argue that cases in animals could be under-reported, but human cases are much harder to hide, and only a total of 2 cases have ever been reported [3]. Canadians eat a lot of beef, so this suggests that the reported numbers for cattle are probably accurate, otherwise the human numbers would be much larger.
However, a different neurological condition (Multiple sclerosis) is more common in Canada than anywhere else in the world [4], which might have some connection with the disease discussed in the article (but this is just a wild guess).
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
The first patient in this cluster to die should provide confirmation of CJD or other prion disease.
There is a theory that spontaneous CJD can be spread environmentally. Apparently particles of sufficiently small size (10 nm) can pass from the nasal cavity directly into the brain via the olfactory nerve. And there was a cluster of CJD victims who were rose gardeners. Rose gardening commonly use Bone and Blood meal to feed the roses, and is typically made from cattle unfit for consumption-ie downer cows/BSE. I may have read about it in The Coming Plague: Newly Emerging Diseases in a World Out of Balance Book by Laurie Garrett.
Creutzfeldt-Jacob can be tested for using the RT-QuIC test[1] where a positive result guarantees with near certainty that misfolded prions are present.
But as the disease is defined via the physical changes in brain tissue only obtainable via autopsy a definite diagnosis is often only made after death.
> 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.
I wonder about this part. I thought consumed protein gets broken down into amino acids and new proteins are created later. Do prion proteins bypass this step?
From what I understand, which is very incomplete, the leading hypothesis at the moment is that ingested prions are a bit hard to digest (because they’re malformed proteins), so they end up making it out of the gastrointestinal tract somehow, interacting with the nervous system via the intestinal lining or lymphatic system. Then they travel to the brain via nervous pathways, by-passing the usual blood–brain barrier.
But transmission of prions by ingestion is thought to be quite rare, as that mechanism suggests. Transmission by any means seems to be quite rare, even heritable transmission (e.g., vCJD). So that’s why it seems unlikely that whatever is happening in New Brunswick is CVD.
But if it’s not some minor mass hysteria, then maybe prions.
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.
Ha, same! The first time I noticed it, coupled with palpitations, I thought I was dying and went to the ER. I swear nobody teaches you how to get older, so everything feels like something is going way wrong. They treated me like a baby, said avoid caffeine, and maybe see a cardio.
And I did. He was an old guy, didn't seem at all worried. He said he worked in pro sports and a surprising number of people have it, including top athletes, try not to worry too much about it. It's been nearly 10 years and I'm still kicking so I guess they were right.
But to this day I avoid smart watches/rings, because I know it'll be nothing but anxiety inducing alarms.
Did you get an EKG? Do you have it documented somewhere this issue randomly occurring is your 'normal', that's easy to share if you have an actual cardiac event? The reason I ask is I have a sternum pectus, so my EKGs can be odd. My cardio said I'm fine, but I should keep my odd EKG on my phone to show any doctors if I have an actual cardio event. Otherwise they may end up chasing something that isn't the issue.
Good idea. I don't, but hopefully I or my wife is around to tell them.
What's funny, or depressing depending on how you look at it... when I told my dad the terrible news, he said 'oh yeah, that's been happening to me for years.' Like I mentioned, nobody, including my parents, seem to teach you about getting old...which is terrible for anxious people like myself.
Getting an EKG seems very prudent. I had one done for a non-heart related procedure, and afterwards was basically asked:
- Ever have any heart events? Heart racing, palpitations, that kind of thing?
- Yes, a few times a year I've noticed events like that. Resolves in a few minutes, though.
- Well, your EKG shows a slurred delta wave. Sign of Wolff-Parkinson-White syndrome. Might want to get that checked out.
I did, and it was. Fixed with ablation. No issues since. Other types of supraventricular tachycardia can also be cured with ablation.
I mean, I had a similar experience with the old doctor not being very worried when I had the same symptom. But when I raised that I was worried about having a heart attack and dying he was equally unworried about that "people die, don't worry about it". And yeah a surprising number of athletes also die suddenly from heart conditions, so I'm not sure I find that very reassuring.
In any case, they did diagnose SVT or some variant. But it pretty much went away, it seemed that getting dehydrated and/or alcohol was triggering it for me.
I actually find a smartwatch that monitors my heart rate very reassuring. I have suffered from anxiety in the past and if I think I'm having anxiety symptoms I can glance at my watch and it tells me everything is fine before I start stressing and making it manifest physically.
Fun story to add: I can't get my heart rate measured. I get so nervous about it that I immediately double my heart rate. Of course it's impossible to communicate that with doctors. One even equipped me with a 24h heart monitor. Only to have my stupid brain go on overdrive and clock my heart at 120+ for the entire time, with 0 sleep. I literally fainted when getting ekg cables on me. I now have on record a heart condition without having one: I just get nervous from measurements lol
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.
COVID vaccines (and various other vaccines), often cause flu-like symptoms for a day or so; you should've been warned about this at the time. Pretty much anything that gives you a fever will boost your heart rate a bit.
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.
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.
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.
* are all the patients really sick or as sick as the symptoms he documents, or is it some kind of Munchausen induced or lied about by the doctor?
* Or are they all sick, they're just not getting the help they need because he wants to have a mystery disease?
* If they're all sick, is it then a higher prevalence than expected, so even if there is no mystery disease there is still something environmental or similar that should've been explored? Aka, is there a cluster, it's just a known disease?
The 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.
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.
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
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.
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.
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.
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.
functional disorders like ME, CFS, Havana syndrome, chronic lyme are very common, particularly since the emergence of patient communities enabled by the internet.
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.
Besides that fact that in this particular case there probably really is 'something' (it would be rare for the brain to spontaneously exhibit CJD symptoms, though it does happen this would most likely not lead to a cluster of cases), you don't need to propose an infectious disease for people that say they have symptoms where there are none, when there is ample proof of people being able to influence each other into believing all kinds of crap to the point that it becomes part of their identity.
I once had a woman and her husband visiting to inquire about buying a house I owned in Northern Groningen, pretty much as far away from anything as you could possibly get in this crowded country. They arrived in a taxi that was blanked for the day (it turned out the man was a cab driver) and after looking the place over and liking it visibly the woman said 'oh, we really like it, but there is one more thing, I am allergic to electromagnetic radiation so let me verify that' (eye roll by the man at this point). She went to the car and came back with a box with a dial on it that she had bought online (a pretty basic field strength meter, set to the most sensitive part of the range) and started walking around muttering to herself and waving the box around like a modern day dowser.
After a while of this she came to me and said she was really sorry but she had to drop her interest because the house was absolutely infested with EM fields. In Amsterdam, where they lived, they had turned their whole apartment into a cage of Faraday with copper mesh nailed against every surface (it turned out they lived right opposite the KPN microwave tower next to the RAI so maybe she even had a point, that thing featured multiple RF links beaming 100's of Watts on tight beam links between other such towers, at some point in the past these carried our long distance phone calls before fiber came along).
I asked if I could see her box for a second and pointed it at the sun: the needle pegged instantly and she was most surprised, so I explained that what she is measuring is real, but so faint that the chances of any kind of interaction with her body are most likely delusional.
Here the conversation abruptly ended...
As for TFA: prions, the agents responsible for CJD are remarkably resilient and annoying and can make it through the foodchain across the digestive barrier and into the brain and even a single one of them can cause CJD.
Perhaps a bit tangential to the main topic, but it is of course true that UTIs can adversely affect cognition in the elderly, even precipitate delirium, etc., depending on type and severity of infection. Naturally that also occurs with other sources of infection, and factors including intoxication due to drugs (prescribed or otherwise) and a host of others. Vulnerability to such decompensation is greater among those already functioning marginally. As such accurate diagnosis can be hard to establish particularly when multiple factors are implicated, hardly a rare circumstance. (At least in my physician-practice that's frequently been the case.)
I appreciate your comment pointing to the importance of carefully evaluating individuals manifesting new onset delusional ideation or other "mental" disturbance. It might be associated with an obscure condition, but likely enough it's the result of common maladies. The worst error is thinking one knows what's going on before (or not at all) thoroughly investigating the possibilities.
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.
> However, one could very well imagine an infectious disease, with or without a dermatological component, causing delusional parasitosis.
Except what's more likely is that it's just psychological - which doesn't mean it doesn't have physiological treatments, it's just going to be for the psyche issue though.
Put it another way: it's well recognized eating disorders exist. But they're psychological disorders: they respond to psychological interventions and treatments, and are curable, but can also "spread" in viral like ways - i.e. an eating disorder can be induced by environmental (peer group) factors.
We don't generally posit that a virus spreads eating disorders, nor has any evidence of one been identified. And so in the same way, there's no reason to think Morgellons should have any underlying pathological cause that's any different, since none has been identified but we are aware of a number of psychological self-harm disorders (which can be amplified or spread sociologically but also just be unusual presentations of other conditions).
Worth noting that in a preindustrial society, plenty of mental illness is caused by infectious agents- at minimum rabies, hookworm, syphilis- so it’s not like science doesn’t believe mental illness can be caused by an infectious agent, or has any bias against that hypothesis. Its one of the first things checked for.
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.
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.
>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.
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.
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.
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.
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.
They're probably referring to the different salts (isopropylamine (IPA), potassium, or diammonium) which can greatly affect absorption and effectiveness
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.
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
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).
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)
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]).
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.
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.
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?
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.
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.
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.
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)
This was one of the more surprising things to me when I lived in Canada: that there is so much of this. Depending on which region you are in you will either have state monopolies on the strangest things and/or a couple of families that have their fingers in just about every pie. And don't get me started on the telecommunications sector.
I wonder if this is largely a function of geography and population. Do we see similar strange things in countries like Australia, Sweden, etc.? Kind of like a small town effect at the national scale.
Sweden has a fair amount of it - see https://en.wikipedia.org/wiki/Systembolaget and (formerly) https://en.wikipedia.org/wiki/Apoteket as examples.
And the Wallenberg family.
I think it goes back all the way to the founding days of Canada, essentially the Hudson Bay Company.
The Family That Owns New Brunswick: The House of Irving: https://www.youtube.com/watch?v=N9I-HY3wfVM
After reading about the mysterious firing and payoff of glysophate studying scientists it seems obvious what stone is going unturned here.
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.
The answer is "nothing"
The only common factor between these patients is Dr. Marrero. It is notable that he is not the only physician who works in that clinic, but is the only one diagnosing this condition. The most likely cause is weak diagnostic skills for challenging patients.
Unfortunately, a majority of these patients likely have Functional Neurologic Disorder https://www.mayoclinic.org/diseases-conditions/conversion-di... , which is a horrible condition that accounts for a plurality of cases seen by most neurologists. This phantom diagnosis will probably make recovery almost impossible for those people. Acceptance of that diagnosis is the number 1 positive indicator for recovery.
Source: I live in the canadian maritimes, and know many neurologists.
> The committee and the New Brunswick government also cast doubt on the work of neurologist Alier Marrero, who was initially referred dozens of cases by baffled doctors in the region, and subsequently identified more cases. The doctor has since become a fierce advocate for patients he feels have been neglected by the province.
https://www.theguardian.com/world/article/2024/jun/03/canada...
It seems to me that it's doctors reaching out to Marrero. It also seems odd that [these|this] illness(es) disproportionately affected young people.
Another article I just read stated Marrero reached out to get second opinions but was blocked.
> He claims he made arrangements in 2020-21 for "subject-matter experts" to travel to New Brunswick to evaluate patients, but the province "chose not to avail itself of this invaluable expertise."
https://www.cbc.ca/news/canada/new-brunswick/new-brunswick-n...
This guy is probably chasing moonshine, but TBH "functional neurological disorder" sounds like one of those face-saving labels that doctors use when they don't have any idea what's going on.
There are actually specific diagnostic criteria for FND. The BBC article mentions that the young patient showed impairment in voluntary motor behaviors, but not in involuntary behaviors (e.g. reflexes). That is characteristic of FND. Similarly, there are clear ways to distinguish FND seizures from epileptic seizures. It is not a wastebasket diagnosis at all.
It is not meant to save the doctors face. The very definition of FND is "doctors dont know what is wrong, but they acknowledge that your symptoms are real".
The point of giving it a name is in the second part. Its about explicitly acknowledging the limitations of medicine
Which when it leads to abuse it's saving face and when it's incompetence it's saving face.
For a competent doctor it's used too let a patient know they're doing their job and an acknowledgement of symptoms.
Unfortunately to a _lot_ of the field "catch-all" "diagnoses" (in intentionally separating these labels). It's the same as diagnosing someone with chronic fatigue. It's diagnosing via exclusion.
The difference between chronic fatigue and brain disorders being that you're more likely to get someone looking to make a "name for themselves" diagnosing or curing the latter vs the former...
“FND”… I bet they need to exercise, eat a balanced breakfast, sleep more and lower stress.
That’ll definitely pause the rapidly progressing dementia and loss of muscle control in patients in their 20s.
When doctors have no idea what something is and aren’t willing to keep trying diagnostics and interventions, it’s always “hey maybe get some more cardio and go easy on the peanut butter cups”.
To be fair, this is also what I hear from my GP when I have no complaints at all. It’s not bad advice, but I think it’s what most doctors tell patients they deem basically healthy. Nobody gets hurt by eating fewer peanut butter cups and taking the dog for a longer walk.
On one visit to my doctor, where the issue was a sports related injury, my doctor told me to get more exercise. Obviously the advice is parroted so often she just blurted it out without thinking. She knows full well I train regularly and if anything get too much exercise.
It’s strange - I had a heart attack almost eight years ago because of years of neglect and decided to do the opposite. I took it so far that I built an application to track everything I do and how it helps (or keeps me from) reaching my goals.
For the longest time all my data said exercise more. That was expected since I literally didn’t move all the way to a cardiac ward. Then all of a sudden it shifted to ‘exercise less, drink less coffee and sleep much more.’
I understand why doctors fall into that blind spot. It was perfect advice for me for a long time and took a lot of failure (and remarkably bad coping mechanisms) for me to figure out.
Solid MAHA advice right there. Just eat French fries fried in beef tallow, avoid all vaccines, and whatever ails you will surely go away. Medicine isn’t actually that complicated. /s
It's a diagnosis that's made only after excluding a wide range of other potential causes for the symptoms (like brain damage, structural abnormalities, strokes, seizures, MS, infections, ...).
It's not just a case of "we don't know", it's a case of "we've looked at everything under the sun and nothing fits".
Sounds like one of those things that needs more research.
Saying to a patient "you have X" can communicate three different things:
- a casual diagnosis: your problem is caused by C
- a syndrome: you have this collection of symptoms which often appear together, we don't know what causes it, we may have some treatments that can help.
The difference between these two is often not communicated well, but they are valid diagnostic categories.
There is a bigger problem with the third one:
- we have done some investigation and don't think further investigation is worth doing.
This may be a correct judgment, or it may not. But it is not a property of the patient. Essentialising it to the patient is incorrect and potentially dangerous. Especially as, it's rarely the case that they've "looked at everything under the sun". There are many reasons for stopping before that - some of them valid, but some not.
> needs more research.
Yes, but it also sounds like the initial stages of "research" should be taxonomy. Starting with QC'ing current testing & diagnosis standards, to have more confidence that the data is reasonably clean.
What doctor claims that everything about the human body is known? Or that they can cure everything?
“Not otherwise specified”
FND is itself basically a trashcan diagnosis. https://en.wikipedia.org/wiki/Wastebasket_diagnosis
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?
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...
Tinnitus is terrible. There are days I'd rather be deaf, but I know a few people that are deaf and realize that that is just my idiot side looking for a quick solution to the problem ignoring the downsides (and I love music). It is so frustrating.
Consider hypothetical scenario: some present in the environment toxin is causing migraine symptoms.
A doctor following diagnostic criteria might assign "migraine" diagnosis and provide standard recommendations for migraine management.
Another doctor seeing a quick uptick of patients with migraine symptoms will try to investigate toxins and infections.
Which doctor is doing something useful here?
and other times it turns out it IS something, e.g. alpha gal and all kinds of weird autoimmune disorders
this stuff is hard, because our tools suck and everything and everyone is an an unreliable narrator
> Source: I live in the canadian maritimes, and know many neurologists.
That's a fairly weak claim for an appeal to authority.
> The answer is "nothing"
Wait by “nothing” do you mean that there is no cause for the disease that the link you posted says has an unknown cause, or “nothing” do you mean that they don’t actually have anything wrong with them but you’re sharing a neat link about a disease that has an unknown cause?
I normally wouldn’t question an hour old throwaway that knows many neurologists, but what exactly are you applying the word “nothing” to here? You started with one statement, said that you don’t like a guy, and then wrote another statement that negates your first statement.
Like by “nothing” do you mean “I personally do not know, so my knowledge of what is causing this is nothing, but I want to share that I don’t like that one doctor”?
> The only common factor between these patients is Dr. Marrero
They all live in the same province too. If you're already wrong here it's hard to trust anything else
That's signal though: it points to an environmental factor.
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.
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.
What did ME and what post covid syndrome show?
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?
What you are stating is considerably more controversial among medical researchers than you claim. I find HN tends towards these sort of views.
Fwiw I downvoted you because you didn't even bother to specify which of the GP’s many statements you think are controversial, nor why.
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
> but rarely nervous tissue of cattle infected with BSE, which is present in Canada more than anywhere else (by a small margin).
I don't think that that's quite right. Over the past 15 years, only 3 cases have been reported in Canadian cattle [0], while Canada has over 12 million cattle at any given moment [1]. This organization claims that Taiwan, Greece, Ecuador, and Russia are all higher-risk [2].
You could certainly argue that cases in animals could be under-reported, but human cases are much harder to hide, and only a total of 2 cases have ever been reported [3]. Canadians eat a lot of beef, so this suggests that the reported numbers for cattle are probably accurate, otherwise the human numbers would be much larger.
However, a different neurological condition (Multiple sclerosis) is more common in Canada than anywhere else in the world [4], which might have some connection with the disease discussed in the article (but this is just a wild guess).
[0]: https://inspection.canada.ca/en/animal-health/terrestrial-an...
[1]: https://www150.statcan.gc.ca/t1/tbl1/en/tv.action?pid=321001...
[2]: https://www.woah.org/en/disease/bovine-spongiform-encephalop...
[3]: https://health-infobase.canada.ca/diseases/cjd/dashboard.htm...
[4]: https://globalnews.ca/news/4191203/multiple-sclerosis-canada...
There's estimates that 13% of Alzheimer's disease cases are misdiagnosed CJD.
https://pubmed.ncbi.nlm.nih.gov/15694685/
https://www.aimspress.com/article/10.3934/Neuroscience.2015....
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://en.wikipedia.org/wiki/Michael_Alpers
* 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
The first patient in this cluster to die should provide confirmation of CJD or other prion disease.
There is a theory that spontaneous CJD can be spread environmentally. Apparently particles of sufficiently small size (10 nm) can pass from the nasal cavity directly into the brain via the olfactory nerve. And there was a cluster of CJD victims who were rose gardeners. Rose gardening commonly use Bone and Blood meal to feed the roses, and is typically made from cattle unfit for consumption-ie downer cows/BSE. I may have read about it in The Coming Plague: Newly Emerging Diseases in a World Out of Balance Book by Laurie Garrett.
They've done autopsies on 11 which pointed to various known conditions according to the article.
Creutzfeldt-Jacob can be tested for using the RT-QuIC test[1] where a positive result guarantees with near certainty that misfolded prions are present. But as the disease is defined via the physical changes in brain tissue only obtainable via autopsy a definite diagnosis is often only made after death.
[1]: https://en.wikipedia.org/wiki/Real-time_quaking-induced_conv...
Thank you for the context.
> 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.
I wonder about this part. I thought consumed protein gets broken down into amino acids and new proteins are created later. Do prion proteins bypass this step?
From what I understand, which is very incomplete, the leading hypothesis at the moment is that ingested prions are a bit hard to digest (because they’re malformed proteins), so they end up making it out of the gastrointestinal tract somehow, interacting with the nervous system via the intestinal lining or lymphatic system. Then they travel to the brain via nervous pathways, by-passing the usual blood–brain barrier.
But transmission of prions by ingestion is thought to be quite rare, as that mechanism suggests. Transmission by any means seems to be quite rare, even heritable transmission (e.g., vCJD). So that’s why it seems unlikely that whatever is happening in New Brunswick is CVD.
But if it’s not some minor mass hysteria, then maybe prions.
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.
Ha, same! The first time I noticed it, coupled with palpitations, I thought I was dying and went to the ER. I swear nobody teaches you how to get older, so everything feels like something is going way wrong. They treated me like a baby, said avoid caffeine, and maybe see a cardio.
And I did. He was an old guy, didn't seem at all worried. He said he worked in pro sports and a surprising number of people have it, including top athletes, try not to worry too much about it. It's been nearly 10 years and I'm still kicking so I guess they were right.
But to this day I avoid smart watches/rings, because I know it'll be nothing but anxiety inducing alarms.
Did you get an EKG? Do you have it documented somewhere this issue randomly occurring is your 'normal', that's easy to share if you have an actual cardiac event? The reason I ask is I have a sternum pectus, so my EKGs can be odd. My cardio said I'm fine, but I should keep my odd EKG on my phone to show any doctors if I have an actual cardio event. Otherwise they may end up chasing something that isn't the issue.
Good idea. I don't, but hopefully I or my wife is around to tell them.
What's funny, or depressing depending on how you look at it... when I told my dad the terrible news, he said 'oh yeah, that's been happening to me for years.' Like I mentioned, nobody, including my parents, seem to teach you about getting old...which is terrible for anxious people like myself.
Getting an EKG seems very prudent. I had one done for a non-heart related procedure, and afterwards was basically asked: - Ever have any heart events? Heart racing, palpitations, that kind of thing? - Yes, a few times a year I've noticed events like that. Resolves in a few minutes, though. - Well, your EKG shows a slurred delta wave. Sign of Wolff-Parkinson-White syndrome. Might want to get that checked out.
I did, and it was. Fixed with ablation. No issues since. Other types of supraventricular tachycardia can also be cured with ablation.
Minute I read the chain above I was looking for someone to point out WPW. It’s relatively easy to manage or cure once you catch it.
Finally a useful application of a tattoo
https://xkcd.com/933/
I mean, I had a similar experience with the old doctor not being very worried when I had the same symptom. But when I raised that I was worried about having a heart attack and dying he was equally unworried about that "people die, don't worry about it". And yeah a surprising number of athletes also die suddenly from heart conditions, so I'm not sure I find that very reassuring.
In any case, they did diagnose SVT or some variant. But it pretty much went away, it seemed that getting dehydrated and/or alcohol was triggering it for me.
I actually find a smartwatch that monitors my heart rate very reassuring. I have suffered from anxiety in the past and if I think I'm having anxiety symptoms I can glance at my watch and it tells me everything is fine before I start stressing and making it manifest physically.
Dehydration is the biggest trigger for me as well, as far as I figured out.
Not to be crude, but if my pee isn't basically clear, I immediately start slamming fluids until it is again.
I’ll add fatigue/stress.
A long bike ride after a stressful week and off it goes.
An interesting observation from a cardiologist to me was that cyclist have 5x the rate of rhythm disorders compared to to general population.
But… ‘It’s hard to work out if that’s drug induced or not’.
Say maybe lay off the performance enhancing drugs.
At 200 BPM the cause should be clearly visible on EKG. Examples:
https://en.my-ekg.com/arrhythmias/supraventricular-tachycard...
It's has similarities to debugging intermittent problems in software which many of us are familiar with. Heisenbugs. Heisen-medical issues.
Fun story to add: I can't get my heart rate measured. I get so nervous about it that I immediately double my heart rate. Of course it's impossible to communicate that with doctors. One even equipped me with a 24h heart monitor. Only to have my stupid brain go on overdrive and clock my heart at 120+ for the entire time, with 0 sleep. I literally fainted when getting ekg cables on me. I now have on record a heart condition without having one: I just get nervous from measurements lol
It's jokingly called 'white coat syndrome'. Any doctor who has a clue should understand this.
Covid.
Or POTS, which can be caused by covid.
https://en.wikipedia.org/wiki/Postural_orthostatic_tachycard...
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.
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.
I got two. But these events started to happen 4 years after my last shot.
An immune response to any trigger temporarily increases the heart rate.
Or Covid itself.
COVID vaccines (and various other vaccines), often cause flu-like symptoms for a day or so; you should've been warned about this at the time. Pretty much anything that gives you a fever will boost your heart rate a bit.
I think it would be worth it to investigate cyanobacteria toxins in water over there as they can cause similar symptoms. Next thing to check would be local sea food. I feel like glyphosate is a red herring here. Heavy metals could come from frequently eating local fish/shellfish.
> "I don't want to provide exact numbers of anything, but let's say it's an unusual number.”
Wait… what?
> But the government had decided against examining any of the patients in person
Wait… what?
The only common factor between these patients is Dr. Marrero.
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...
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-...
And the general area they live in.
He sounds like a homeopath and/or a quack.
I'm sure this has absolutely nothing to do with government grant money or other such funding.
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.
> But the cause is clearly no physical thing in the environment.
And you're 100% sure on that?
Some questions I'm stuck with:
* are all the patients really sick or as sick as the symptoms he documents, or is it some kind of Munchausen induced or lied about by the doctor?
* Or are they all sick, they're just not getting the help they need because he wants to have a mystery disease?
* If they're all sick, is it then a higher prevalence than expected, so even if there is no mystery disease there is still something environmental or similar that should've been explored? Aka, is there a cluster, it's just a known disease?
The 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.
The entire province only has a population of 800-900k
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.
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
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.
https://archive.ph/nItn1
Anyone have a link to the JAMA paper?
This is such a frustrating situation to read about, because it is clear that Dr. Marrero is out of his depth, but it’s also clear that whatever this cluster is - real or imagined - was horribly mismanaged by the health officials in charge.
The fact that the investigation was disbanded simply because the patients had symptoms that can be tied to existing diseases is utterly asinine. As if there’s no reason to investigate why so many people in such a small area have similar conditions, or even to investigate whether or not the demographics of the supposed cluster are out of the ordinary in the first place. Even if there was no related cause at all, such an investigation could be used to determine that Dr. Marrero was the cause of a problem and stop him from doing harm. But instead the result was that no satisfactory conclusion was reached for the majority of people, and the patients continue to suffer.
These people need help and they are being failed by their doctors, their administrative officials and their representatives all at the same time.
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.
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.
It it's a prion disease they won't get better period.
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.... The corresponding paper is 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.
Compare to Havana syndrome - another disputed 'mystery brain disease'.
CHUPPL did a deep dive on this one I highly recommend https://www.youtube.com/watch?v=xqE0ltifQ2M
functional disorders like ME, CFS, Havana syndrome, chronic lyme are very common, particularly since the emergence of patient communities enabled by the internet.
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.
Besides that fact that in this particular case there probably really is 'something' (it would be rare for the brain to spontaneously exhibit CJD symptoms, though it does happen this would most likely not lead to a cluster of cases), you don't need to propose an infectious disease for people that say they have symptoms where there are none, when there is ample proof of people being able to influence each other into believing all kinds of crap to the point that it becomes part of their identity.
I once had a woman and her husband visiting to inquire about buying a house I owned in Northern Groningen, pretty much as far away from anything as you could possibly get in this crowded country. They arrived in a taxi that was blanked for the day (it turned out the man was a cab driver) and after looking the place over and liking it visibly the woman said 'oh, we really like it, but there is one more thing, I am allergic to electromagnetic radiation so let me verify that' (eye roll by the man at this point). She went to the car and came back with a box with a dial on it that she had bought online (a pretty basic field strength meter, set to the most sensitive part of the range) and started walking around muttering to herself and waving the box around like a modern day dowser.
After a while of this she came to me and said she was really sorry but she had to drop her interest because the house was absolutely infested with EM fields. In Amsterdam, where they lived, they had turned their whole apartment into a cage of Faraday with copper mesh nailed against every surface (it turned out they lived right opposite the KPN microwave tower next to the RAI so maybe she even had a point, that thing featured multiple RF links beaming 100's of Watts on tight beam links between other such towers, at some point in the past these carried our long distance phone calls before fiber came along).
I asked if I could see her box for a second and pointed it at the sun: the needle pegged instantly and she was most surprised, so I explained that what she is measuring is real, but so faint that the chances of any kind of interaction with her body are most likely delusional.
Here the conversation abruptly ended...
As for TFA: prions, the agents responsible for CJD are remarkably resilient and annoying and can make it through the foodchain across the digestive barrier and into the brain and even a single one of them can cause CJD.
https://www.nhs.uk/conditions/creutzfeldt-jakob-disease-cjd/
Perhaps a bit tangential to the main topic, but it is of course true that UTIs can adversely affect cognition in the elderly, even precipitate delirium, etc., depending on type and severity of infection. Naturally that also occurs with other sources of infection, and factors including intoxication due to drugs (prescribed or otherwise) and a host of others. Vulnerability to such decompensation is greater among those already functioning marginally. As such accurate diagnosis can be hard to establish particularly when multiple factors are implicated, hardly a rare circumstance. (At least in my physician-practice that's frequently been the case.)
I appreciate your comment pointing to the importance of carefully evaluating individuals manifesting new onset delusional ideation or other "mental" disturbance. It might be associated with an obscure condition, but likely enough it's the result of common maladies. The worst error is thinking one knows what's going on before (or not at all) thoroughly investigating the possibilities.
This disease is different because its main symptom is dementia.
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.
Joni Mitchell for one of the most famous sufferers
Billy Koch, the MLB reliver who played for the A's and the Jays, was the one I remembered.
> However, one could very well imagine an infectious disease, with or without a dermatological component, causing delusional parasitosis.
Except what's more likely is that it's just psychological - which doesn't mean it doesn't have physiological treatments, it's just going to be for the psyche issue though.
Put it another way: it's well recognized eating disorders exist. But they're psychological disorders: they respond to psychological interventions and treatments, and are curable, but can also "spread" in viral like ways - i.e. an eating disorder can be induced by environmental (peer group) factors.
We don't generally posit that a virus spreads eating disorders, nor has any evidence of one been identified. And so in the same way, there's no reason to think Morgellons should have any underlying pathological cause that's any different, since none has been identified but we are aware of a number of psychological self-harm disorders (which can be amplified or spread sociologically but also just be unusual presentations of other conditions).
Worth noting that in a preindustrial society, plenty of mental illness is caused by infectious agents- at minimum rabies, hookworm, syphilis- so it’s not like science doesn’t believe mental illness can be caused by an infectious agent, or has any bias against that hypothesis. Its one of the first things checked for.
Deep dive into New Brunswick, JD Irving, and their ongoing issues with Glyphosate pollution. Canadian researchers specializing on CJD have been blocked from investigating this case [0].
Sadly, the Irvings have extremely close ties with both the Liberals [1] and Conservatives [2][3] and are essentially untouchable due to Canada's parliamentary nature.
The NYT has been doing an on-the-ground report on this issue for a couple years now [4][5]
It reminds me of similar stories I heard while growing up from family friends of mine who ran a construction business on Vancouver Island and the Lower Mainland about how cheap it was to "lobby" and get a personal meeting and photograph with Martin and Harper, and this was after Railgate.
[0] - https://www.theguardian.com/world/article/2024/jun/03/canada...
[1] - https://www.theglobeandmail.com/politics/article-minister-le...
[2] - https://nsadvocate.org/2020/09/15/big-win-for-the-irvings-in...
[3] - https://www.cbc.ca/news/canada/new-brunswick/pcs-criticized-...
[4] - https://www.nytimes.com/2024/08/14/magazine/canada-brain-dis...
[5] - https://www.nytimes.com/2025/04/01/world/canada/irving-famil...
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-n...
>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.
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-brian...
[1] - https://www.nytimes.com/2025/03/18/nyregion/adams-china-camp...
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.
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.
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.
They're probably referring to the different salts (isopropylamine (IPA), potassium, or diammonium) which can greatly affect absorption and effectiveness
Roundup is IPA, Touchdown is DAM. Both extremely common.
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-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
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).
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)
The Irving family also has a near monopoly on oil refining, trucking, and other high polluting industries in NB and Maine.
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/2019/0...
[1] - https://themainemonitor.org/maines-future-with-irving/
[2] - https://mainebiz.biz/article/the-irving-influence-a-look-at-...
Glyphosate, not "glyphosates". Roundup. It's used everywhere. It's an extremely widely used herbicide.
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.
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.
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?
FND == neurologist gaslighting the patient. Formerly known as hysteria.
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.
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.
MAID for an FND is crazy, i hope Canada is not so ridiculous
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.
The article describes one patient getting multiple treatments, none of which worked.