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."

 

They All Got Mysterious Brain Diseases. They’re Fighting to Learn Why.

https://www.nytimes.com/2024/08/14/magazine/canada-brain-disease-dementia.html?unlocked_article_code=1.DE4.z8pQ.YfX4w54kidrC&smid=url-share

 

Fascinating story. Most people are interested in the power angle, who can shut down an investigation. And that's important.

But what I'm interested in is the mention of prion disease. Prions are amino acids that can make other amino acids take on their shape. In essence they are contagious shapes.

The best simple explanation is saw is this: There's a protein in the body that's meant to look like this: ]. it's a flat plane, like a saucer. But sometimes it gets mutated to look like this: }
So if a } is there and along comes a ], the ] turns into a }. SO then you have }}. Eventually you get }}}}}}}}}}}}}}}}}}} and that gums things up.

What's incredible about that is how far out-of-sample such a thing is. Illness is caused, traditionally, by microbes, poison, the immune system, or trauma. Then we have this whole other situation, where illness is caused by a contagious shape. A major way of getting a prion disease is by eating the protein in question. Cannibals were quite prone to prion disease (Kuru). Eating cows with bovine spongiform encephalopathy can cause creutzfeld jakob disease in humans, and it is fatal.

Deer in the US have extremely widespread prion disease at the moment called wasting disease. The protein in question is slightly different in deer to people so it doesn't cause illness in people. An individual who eats deer in the US is highly unlikely to get sick, at this point. But at a population level, given the millions of people out there that hunt and eat deer, it is probably not impossible that some people will eat evenutally deer with a mutation in that amino acid that makes it transmissible. They will get a prion disease. And we might not know until decades later that the mutation has happened.

One reason it is so scary is the long latency. Sometimes the prion can be in a human body, not doing much for years and the slow spread of its aberrant shape can take decades before symptoms arise.

Anyway, I think the relevance of prion disease for us is reminding medicine that sometimes disease runs along unexpected pathways and there's probably still some unwritten chapters in the biology textbooks.

 

I’m sure they could all get a FND diagnosis—that would explain everything (yes, sarcasm).

 

Mystery brain disease patients in New Brunswick say they welcome new investigation

A lot has changed since 2022, Health Minister John Dornan said in a recent interview, noting that there were fewer than 50 patients who had presented with symptoms at the time. Now, he says, there are more than 400.

“It’s a new phenomena,” Dornan said. “Whether we characterize it as a disease or a syndrome or some other common denominator, our first step is to understand what is happening.”

“We’re doing that right now. So (the process) has begun. It has more than begun.”

Federal Health Minister Mark Holland called it a “great collaboration.”

“The Public Health Agency of Canada is deeply engaged. We’re working through that process to be able to understand what’s going on, and to make sure that we have the data and evidence to really understand what is occurring, and then how do we go after it,” he said.
LINK

 

Analysis of 'undiagnosed neurological illness' underway, too soon to talk possible source, says doctor

"The New Brunswick government has begun the "data analysis phase" of its investigation into undiagnosed neurological symptoms affecting hundreds of people in seven provinces and whether environmental substances, such as heavy metals and pesticides, are a factor."