Weird brain stuff in Canada

[Fishnut]

The Guardian have an article about a potential outbreak of brain illness in New Brunwick, Canada. It's unclear whether this is cranks trying to stir up sh.t or a government trying to shut down a legitimate investigation, and seemed perfect for discussing here.

Top Canadian scientist alleges in leaked emails he was barred from studying mystery brain illness

A leading federal scientist in Canada has alleged he was barred from investigating a mystery brain illness in the province of New Brunswick and said he fears more than 200 people affected by the condition are experiencing unexplained neurological decline.
...
New Brunswick health officials warned in 2021 that more than 40 residents were suffering from a possible unknown neurological syndrome, with symptoms similar to those of the degenerative brain disorder Creutzfeldt-Jakob disease. Those symptoms were varied and dramatic: some patients started drooling and others felt as though bugs were crawling on their skin.

A year later, however, an independent oversight committee created by the province determined that the group of patients had most likely been misdiagnosed and were suffering from known illnesses such as cancer and dementia.

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.
...
leaked emails viewed by the Guardian tell a starkly different story and suggest senior research scientists in Canada’s public health agency (PHAC) remain increasingly concerned over the cause – and the debilitating symptoms – of an seemingly unexplained illness that disproportionately affects younger people.

[IvanV]

The Guardian have an article about a potential outbreak of brain illness in New Brunwick, Canada. It's unclear whether this is cranks trying to stir up sh.t or a government trying to shut down a legitimate investigation, and seemed perfect for discussing here.

Top Canadian scientist alleges in leaked emails he was barred from studying mystery brain illness

...Those symptoms were varied and dramatic: some patients started drooling and others felt as though bugs were crawling on their skin.

Feeling of bugs crawling on you, known as formication, is often mentioned in relation to Morgellons, a once controversial but unsubstantiated disease that got a lot of attention about 20 years ago, which general consensus considers a delusional syndrome. I haven't seen any publicity for the Morgellons hypothesis for quite a long time. Perhaps this is trying to crank up something like that again.

[shpalman]

The official website for the New Brunswick neurological syndrome of unknown cause and its wiki page.

[IvanV]

...and its wiki page.

Which says

On 7 October [2021] Jansen published the results of the eight autopsies on Canadian Association of Neuropathologists (CANP) website. ...[H]e suggested that the eight patients previously diagnosed with the novel neurological syndrome, "represent a group of misclassified clinical diagnoses", and that they "died from a variety of causes, including cancer, Lewy body dementia and Alzheimer's disease". The abstract said that "in these eight patients no evidence for a prion disease was found, nor novel pathology".

And yet it goes on.

[raven]

It is pretty easy for an individual doctorto see patterns in the group of patients they see in front of them, patterns that if you look on a wider population level aren't statisitcally significant and can be explained by other things. (We all tend to create patterns with hindsight, see Feynman's car license plate anecdote...) And it's very hard to let go of personal experience, which we tend to believe in more deeply than cold statistics. (Daniel Kahneman...)

OTOH, we set up surveillance systems for prion diseases for a reason. Novel diseases do arise from time to time. So it's not unreasonable for people to be concerned and I can sympathise with the families and doctors who are.

You need to follow the evidence though. And sometimes that is a while coming, and a while before it becomes conclusive.

ETA: The story reminds me of a documentary I saw on RT, back when it was broadcast in the UK, about an odd sort of paralysis/drooling syndrome affecting people randomly somewhere in central Asia. There was some suggestion of an environmental toxin or a neurological disease with that too, but dunno if that was ever substantiated.

[dyqik]

It is pretty easy for an individual doctorto see patterns in the group of patients they see in front of them, patterns that if you look on a wider population level aren't statisitcally significant and can be explained by other things. (We all tend to create patterns with hindsight, see Feynman's car license plate anecdote...) And it's very hard to let go of personal experience, which we tend to believe in more deeply than cold statistics. (Daniel Kahneman...)

There can also be a selection bias going on - patients with weird brain stuff hearing about a particular doctor to go see, or being sent to one particular expert in an area, because primary care physicians hear about them.

[wilsontown]

Did this not come up on here before? Or maybe the Other Place? I lived in New Brunswick when I was a graduate student (and it never did me any harm...) so I'm sure I recall some previous discussion.

[bob sterman]

Did this not come up on here before? Or maybe the Other Place? I lived in New Brunswick when I was a graduate student (and it never did me any harm...) so I'm sure I recall some previous discussion.

Briefly...

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