Scrutable

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.
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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.
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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.

Fishnut wrote: Mon Jun 03, 2024 3:28 pm 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.

shpalman wrote: Mon Jun 03, 2024 4:27 pm ...and its wiki page.

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".

raven wrote: Fri Jun 07, 2024 11:31 am 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...)

wilsontown wrote: Sat Jun 08, 2024 7:49 pm 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.