Canada - Unknown brain disease in New Brunswick

https://www.theguardian.com/world/2...ng-young-adults-canada?CMP=Share_iOSApp_Other

 

Merged thread

https://www.theguardian.com/world/a...nada-email-leak-new-brunswick-mystery-illness

Quotes:

"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.

But 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.

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."

I wonder how long it'll be before FND researchers swoop in.

 

they'll rebrand them as FND any time soon

 

shocked they havent already.

 

Clearly Simon Wessely is losing his touch. 15 years ago, he would have already done two interviews with the BBC describing this as a straightforward cluster of psychogenic illness.

 

Don’t curse it…

 

amazing how the modern approach to an emerging, new disease is trying, by all means possible, to prove it doesn't exist, or to hide its existence. When did the medical profession start acting like that? If I'm correct, historically, medical researchers tried to understand the mechanisms behind any new disease or the diseases they didn't understood, and eventually, develop diagnostic tools and treatments. Any thoughts on this?

 

Follow up article from The Guardian: Second Canadian scientist alleges brain illness investigation was shut down

"A senior Canadian federal scientist has alleged that the government shut down an investigation into a mystery brain illness in New Brunswick that he believes may have affected 350 people.

He is the second federal scientist to accuse the government of deliberately halting the investigation and to say that the caseload is higher than the government has acknowledged.

Health officials in the eastern province first said in 2021 that 40 people were suffering from an unexplained neurological condition. A year later, a committee assembled by the province determined that the patients probably had been misdiagnosed and were suffering from other diseases.

In a leaked email seen by the Guardian, Prof Samuel Weiss, a neuroscientist working for the Canadian federal agency responsible for funding medical research, wrote that the government had deliberately curtailed the search for an explanation."

"Weiss is the scientific director of the Institute of Neuroscience, Mental Health and Addiction at the Canadian Institutes of Health Research and a member of the Canadian Medical Hall of Fame for his research in neurogenesis, the process by which neurons are generated in the brain, which has pioneered avenues for treatment of several degenerative brain diseases including Parkinson’s, Alzheimer’s and multiple sclerosis."

"Public Health New Brunswick says on its website: “An oversight committee reviewing the case files of all 48 of the potential cases found that the patients didn’t have symptoms in common or have a shared common illness. It’s important to understand that outbreak investigations are not rare … Every cluster or outbreak with an unknown cause is considered a ‘mystery illness’ until an outbreak investigation can be done to find out why people are becoming ill.”

While the province’s investigative committee concluded there was no “cluster” of patients with a mystery illness, the leaked emails show that senior research scientists remain unconvinced."