Posted by lewww 10 hours ago
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)
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 point of giving it a name is in the second part. Its about explicitly acknowledging the limitations of medicine
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...
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”.
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.
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.
- 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.
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...
> 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...
dementia, weight loss, unsteadiness, jerking movements and facial twitches
This actually describes my benzodiazepine withdrawal symptoms. The only thing missing is the suicide-inducing tinnitus.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?
That's a fairly weak claim for an appeal to authority.
this stuff is hard, because our tools suck and everything and everyone is an an unreliable narrator
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”?
They all live in the same province too. If you're already wrong here it's hard to trust anything else
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.
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?
Creutzfeldt–Jakob Disease is a prion disease [0] for which there is no definitive diagnosis in vivo. A confident diagnosis can be made only after examining brain tissue under a microscope.
Prions are an unusual type of mis-folded protein that induce other proteins to take on a similar mis-folded shape when they come into contact with them. The mis-folded shape of the prion itself is what causes the mis-folding in adjacent proteins. It’s a chemical-bonding thing at the molecular level. It’s the shape of the prion that causes other proteins to take on a similar shape and become prions, etc.
Some prion diseases occur spontaneously (when a protein takes on a mis-folded configuration due to mis-transcription or random energetic impulses) and some are transmitted, typically by eating some part of an animal that contains prions, which then end up in your own body, inducing proteins in your body to take on prion configurations.
Prion diseases are the only known transmissible diseases that do not involve the replication of a pathogen’s genetic material in a host cell. The only known prion diseases affect nervous tissues, and in humans the only known prion diseases affect brain tissues.
I’m not an expert on prion diseases, but I’ve had a bit of a fascination with them since having to report on a bunch of USDA surveillance lectures on mad-cow disease (bovine spongiform encephalopathy, BSE) and to summarize a bunch of symposia on prion diseases in a previous life. The symptoms reported in the article sound very much like a prion disease, and the tests for CJD indicate that the doctors in the region suspect as much.
But we simply don’t have good tests for prion diseases in vivo. And prion diseases are not well understood in general, so it wouldn’t be surprising that a new one would present as something of a mystery.
It is also the case that I know very little about New Brunswick, but I will mention that prion diseases in humans are thought to be far more commonly acquired than spontaneous. The most common cause of acquisition is eating animals with endemic prion diseases; this is most often nervous tissue of venison, but rarely nervous tissue of cattle infected with BSE, which is present in Canada more than anywhere else (by a small margin).
It is also possible (but not likely) that a prion disease can arise de novo.
I 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...
https://pubmed.ncbi.nlm.nih.gov/15694685/
https://www.aimspress.com/article/10.3934/Neuroscience.2015....
[1]: https://en.wikipedia.org/wiki/Real-time_quaking-induced_conv...
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.
* 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
> 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?
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.
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.
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.
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.
I did, and it was. Fixed with ablation. No issues since. Other types of supraventricular tachycardia can also be cured with ablation.
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.
Not to be crude, but if my pee isn't basically clear, I immediately start slamming fluids until it is again.
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.
https://en.my-ekg.com/arrhythmias/supraventricular-tachycard...
https://en.wikipedia.org/wiki/Postural_orthostatic_tachycard...
Sorry you missed out on simple, effective preventative health measures because of this misunderstanding.
Wait… what?
> But the government had decided against examining any of the patients in person
Wait… what?
> 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...
https://ici.radio-canada.ca/nouvelle/2165181/allier-marrero-...
I'm sure this has absolutely nothing to do with government grant money or other such funding.
My theory is that this hypothesis is shut down by the fishing industry.
* 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?