sharon sanders
Editor-in-Chief & President
bump this
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Canada - New Brunswick monitoring more than 48 cases (10 fatal) of unknown neurological disease - 2015+ - officials say illnesses are due to unrelated
- Thread starter Shiloh
- Start date
How is this even possible?
Mystery brain illness baffles Canadian doctors as cases continue to spread among young people (nypost.com)
[snip]
A mystery brain illness that is baffling Canadian doctors is increasingly affecting young people, a doctor has claimed.
People who care for patients with the progressively worsening disease are also bizarrely becoming sick, as though it is catching.
[snip]
Mystery brain illness baffles Canadian doctors as cases continue to spread among young people (nypost.com)
[snip]
A mystery brain illness that is baffling Canadian doctors is increasingly affecting young people, a doctor has claimed.
People who care for patients with the progressively worsening disease are also bizarrely becoming sick, as though it is catching.
[snip]
There's no way of explaining this, even as a novel prion or novel virus. If this were a truly contagious illness, even with a long incubation period, you'd have a lot more than 9 deaths after three years and the autopsies would clearly pick up the method of damage, even fi they can't detect the agent. This isn't consistent with the autopsies or anything else reported in this thread. Commenters on some of the recent articles have suggested that a mass psychogenic illness episode may be occurring on top of whatever is causing the undiagnosed illnesses, complicating the attempts to solve this outbreak.
What has been reported in the last two days here is basically a doomsday zombie apocalypse outbreak and might also be a sign of people panicking at the inability to solve the actual illness. This outbreak needs a serious investigation, possibly by international experts, of some of the more probable cases, such as Mr. Ellis and Ms. Cormier, and not leaks of a zombie apocalypse to the foreign media.
If the above post was the first post in a new outbreak, it would be by far the most alarming post in FT history. But it's not.
What has been reported in the last two days here is basically a doomsday zombie apocalypse outbreak and might also be a sign of people panicking at the inability to solve the actual illness. This outbreak needs a serious investigation, possibly by international experts, of some of the more probable cases, such as Mr. Ellis and Ms. Cormier, and not leaks of a zombie apocalypse to the foreign media.
If the above post was the first post in a new outbreak, it would be by far the most alarming post in FT history. But it's not.
New report out today with several case histories, including three young people who haven't been previously mentioned (although one of them has a history of football concussions and another has been provisionally re-diagnosed as PTSD):
Young patients with mystery neurological illness in New Brunswick anxious for answers | CBC News
Young patients with mystery neurological illness in New Brunswick anxious for answers | CBC News
Shiloh
Editor, Senior Moderator
Source: https://www.cbc.ca/news/canada/new-brunswick/mystery-brain-disease-new-brunswick-1.6303781
Young patients with mystery neurological illness in New Brunswick anxious for answers
20 per cent of cluster of cases are under the age of 40, CBC News has learned
Maeve McFadden · CBC News · Posted: Jan 05, 2022 6:00 AM AT | Last Updated: 1 hour ago
Terriline Porelle was at work during the summer of 2020 when she had a sharp pain in her leg. She assumed it was a pinched nerve.
She had no idea it was the first indication she might be suffering from a mysterious, fatal neurological illness.
Things got worse, though. Once an enthusiastic outdoor adventure-seeker, Porelle now bumps into walls and doors making her way around her house in the southeastern New Brunswick community of Cocagne.
It has been a long road for the 33-year-old since that first shot of pain. A road that eventually led to a cluster of 48 patients with a neurological syndrome of unknown cause in New Brunswick.
Porelle's symptoms have dimmed a bright young lifestyle — something true for other young people facing the same diagnosis...
Young patients with mystery neurological illness in New Brunswick anxious for answers
20 per cent of cluster of cases are under the age of 40, CBC News has learned
Maeve McFadden · CBC News · Posted: Jan 05, 2022 6:00 AM AT | Last Updated: 1 hour ago
Terriline Porelle was at work during the summer of 2020 when she had a sharp pain in her leg. She assumed it was a pinched nerve.
She had no idea it was the first indication she might be suffering from a mysterious, fatal neurological illness.
Things got worse, though. Once an enthusiastic outdoor adventure-seeker, Porelle now bumps into walls and doors making her way around her house in the southeastern New Brunswick community of Cocagne.
It has been a long road for the 33-year-old since that first shot of pain. A road that eventually led to a cluster of 48 patients with a neurological syndrome of unknown cause in New Brunswick.
Porelle's symptoms have dimmed a bright young lifestyle — something true for other young people facing the same diagnosis...
sharon sanders
Editor-in-Chief & President
bump this
Emily
Editor, Senior Moderator
This looks like the source of the story Alert posted above. Possibly the caretakers are sharing meals with patients, (though the government said no food link found), or there's another problem like a low-level CO or gas leak in the home, or toxic mold in a few of those cases.
https://www.theguardian.com/world/2022/jan/02/neurological-illness-affecting-young-adults-canada
Whistleblower warns baffling illness affects growing number of young adults in Canadian province
Several new cases in New Brunswick involve caretakers of those afflicted, suggesting a possible environmental trigger
Leyland Cecco
Sun 2 Jan 2022 06.00 EST
...
The Vitalité employee, who asked not to be named because they were unauthorized to speak publicly and feared repercussions for speaking out, said they decided to come forward because of growing concerns over the speed with which young people have deteriorated.
“This is not a New Brunswick disease,” said the employee. “We’re probably the area that is raising the flag because we’re mostly rural and in an area where people might have more exposure to environmental factors.”
...
“The fact that we have a younger spectrum of patients here argues very strongly against what appears to be the preferred position of the government of New Brunswick – that the cases in this cluster are being mistakenly lumped together,” said a scientist at the Canada’s public health agency, who specializes in neurodegenerative illnesses but was unauthorized to speak.
...
In one study, high concentrations of BMAA were found in lobster, an industry that drives the economies of many of New Brunswick’s coastal communities. The province’s apparent resistance to testing for suspected environmental factors has led to speculation among families that the efforts to rule out the existence of a cluster could be motivated by political decision making.
“If a group of people wanted to breed conspiracy theorists, then our government has done a wonderful job at promoting it,” said Beatty. “Are they just trying to create a narrative for the public that they hope we’ll absorb and walk away from? I just don’t understand it.”...
https://www.theguardian.com/world/2022/jan/02/neurological-illness-affecting-young-adults-canada
Whistleblower warns baffling illness affects growing number of young adults in Canadian province
Several new cases in New Brunswick involve caretakers of those afflicted, suggesting a possible environmental trigger
Leyland Cecco
Sun 2 Jan 2022 06.00 EST
...
The Vitalité employee, who asked not to be named because they were unauthorized to speak publicly and feared repercussions for speaking out, said they decided to come forward because of growing concerns over the speed with which young people have deteriorated.
“This is not a New Brunswick disease,” said the employee. “We’re probably the area that is raising the flag because we’re mostly rural and in an area where people might have more exposure to environmental factors.”
...
“The fact that we have a younger spectrum of patients here argues very strongly against what appears to be the preferred position of the government of New Brunswick – that the cases in this cluster are being mistakenly lumped together,” said a scientist at the Canada’s public health agency, who specializes in neurodegenerative illnesses but was unauthorized to speak.
...
In one study, high concentrations of BMAA were found in lobster, an industry that drives the economies of many of New Brunswick’s coastal communities. The province’s apparent resistance to testing for suspected environmental factors has led to speculation among families that the efforts to rule out the existence of a cluster could be motivated by political decision making.
“If a group of people wanted to breed conspiracy theorists, then our government has done a wonderful job at promoting it,” said Beatty. “Are they just trying to create a narrative for the public that they hope we’ll absorb and walk away from? I just don’t understand it.”...
sharon sanders
Editor-in-Chief & President
bump this
Shiloh
Editor, Senior Moderator
Source: https://www.thestar.com/news/canada...keptical-can-new-brunswick-clear-the-air.html
How the hunt for a mystery disease left patients angry and experts skeptical. Can New Brunswick clear the air?
Ahead of a report by the New Brunswick government, there is anger and skepticism among some of those suffering from unexplained symptoms
By Steve McKinleyHalifax Bureau
Sun., Jan. 9, 2022
At some point this month, the New Brunswick government is expected to release its report into what’s been described as a mystery neurodegenerative brain disease that is plaguing scores of its citizens.
It’s a report that will almost certainly be greeted with skepticism and mistrust.
Those suffering with symptoms in the East Coast province will tell you such feelings are warranted.
Almost from the moment a leaked government memo announced the suspected existence of an unknown neurological disease, the province’s investigation — one that has received national and international media attention — has been surrounded by suspicion.
The transparency and open communication that was promised by the province has not materialized. The environmental tests that some patients say were promised never happened. Media reports have surfaced that the province asked the federal government to stand down, rather than help with the investigation, amid evident internal tension over the investigation. Offers of help from other experts have also reportedly been spurned.
Instead, the province proffered an interim report in October, that concluded the 48 cases of the mystery syndrome were not connected by diet or environment or geography. The province’s health minister has opined that the cases are not related.
One expert now says it might be worthwhile to put some of the investigation in the hands of an independent third party.
Matt Betti is a mathematical biologist, an assistant professor of math and computer science at Mount Allison University in New Brunswick. His specialty is in infectious disease modelling. He’s been a consultant for Health Canada throughout the pandemic, helping create models and forecasts for the spread of COVID-19.
The same principles that enable infectious disease models to predict the future spread of a disease, he says, also enable researchers to look backwards, to see how a disease has spread.
Betti is preparing, pending ethics approval from the university, to put together a team that would use disease modelling scenarios to search for past commonalities among those experiencing symptoms.
That’s something that, to his mind, the province to date has not thoroughly investigated...
How the hunt for a mystery disease left patients angry and experts skeptical. Can New Brunswick clear the air?
Ahead of a report by the New Brunswick government, there is anger and skepticism among some of those suffering from unexplained symptoms
By Steve McKinleyHalifax Bureau
Sun., Jan. 9, 2022
At some point this month, the New Brunswick government is expected to release its report into what’s been described as a mystery neurodegenerative brain disease that is plaguing scores of its citizens.
It’s a report that will almost certainly be greeted with skepticism and mistrust.
Those suffering with symptoms in the East Coast province will tell you such feelings are warranted.
Almost from the moment a leaked government memo announced the suspected existence of an unknown neurological disease, the province’s investigation — one that has received national and international media attention — has been surrounded by suspicion.
The transparency and open communication that was promised by the province has not materialized. The environmental tests that some patients say were promised never happened. Media reports have surfaced that the province asked the federal government to stand down, rather than help with the investigation, amid evident internal tension over the investigation. Offers of help from other experts have also reportedly been spurned.
Instead, the province proffered an interim report in October, that concluded the 48 cases of the mystery syndrome were not connected by diet or environment or geography. The province’s health minister has opined that the cases are not related.
One expert now says it might be worthwhile to put some of the investigation in the hands of an independent third party.
Matt Betti is a mathematical biologist, an assistant professor of math and computer science at Mount Allison University in New Brunswick. His specialty is in infectious disease modelling. He’s been a consultant for Health Canada throughout the pandemic, helping create models and forecasts for the spread of COVID-19.
The same principles that enable infectious disease models to predict the future spread of a disease, he says, also enable researchers to look backwards, to see how a disease has spread.
Betti is preparing, pending ethics approval from the university, to put together a team that would use disease modelling scenarios to search for past commonalities among those experiencing symptoms.
That’s something that, to his mind, the province to date has not thoroughly investigated...
sharon sanders
Editor-in-Chief & President
bump this
A bit more of the political mess surrounding this outbreak:
N.B. neurological syndrome: Researcher, advocates aim to circumvent province | Globalnews.ca
Do New Brunswick neurological syndrome answers add up? | Watch News Videos Online (globalnews.ca)
N.B. neurological syndrome: Researcher, advocates aim to circumvent province | Globalnews.ca
Do New Brunswick neurological syndrome answers add up? | Watch News Videos Online (globalnews.ca)
Shiloh
Editor, Senior Moderator
Source: https://www.cbc.ca/news/canada/new-brunswick/nb-mystery-illness-timeline-1.6311269
No longer a sure thing: Records show how N.B. investigation into mystery illness changed over time
Public Health paused meetings with several scientific experts in May
Karissa Donkin · CBC News · Posted: Jan 13, 2022 5:00 AM AT | Last Updated: 3 hours ago
For three months last year, medical and environmental experts in New Brunswick, along with many from beyond the province, met with provincial public health officials about what they described as a "neurological syndrome of unknown cause."
But that all changed on May 6, 2021, when provincial health officials halted those meetings.
According to the province, the syndrome of unknown cause has affected 48 people who have symptoms such as memory problems, balance issues and behaviour changes.
Hundreds of pages of records obtained by CBC News through access to information reveal new details of those meetings, and how New Brunswick's strategy around investigating the syndrome changed over time.
An oversight committee, made up mostly of neurologists from within the province, has been doing a clinical investigation with patients from the cluster.
Their report is expected to be released early this year and could conclude there isn't a mystery syndrome...
No longer a sure thing: Records show how N.B. investigation into mystery illness changed over time
Public Health paused meetings with several scientific experts in May
Karissa Donkin · CBC News · Posted: Jan 13, 2022 5:00 AM AT | Last Updated: 3 hours ago
For three months last year, medical and environmental experts in New Brunswick, along with many from beyond the province, met with provincial public health officials about what they described as a "neurological syndrome of unknown cause."
But that all changed on May 6, 2021, when provincial health officials halted those meetings.
According to the province, the syndrome of unknown cause has affected 48 people who have symptoms such as memory problems, balance issues and behaviour changes.
Hundreds of pages of records obtained by CBC News through access to information reveal new details of those meetings, and how New Brunswick's strategy around investigating the syndrome changed over time.
An oversight committee, made up mostly of neurologists from within the province, has been doing a clinical investigation with patients from the cluster.
Their report is expected to be released early this year and could conclude there isn't a mystery syndrome...
sharon sanders
Editor-in-Chief & President
bump this
A good summary of Ms. Porelle's illness, published today in a British paper:
Woman gets mystery brain disease making growing group of people walk into walls - Mirror Online
And a summary of Ms. Cormier's illness, published in a Canadian source:
"A 20-year-old does not typically get symptoms of dementia" (canadaland.com)
----
(I'm making the decision at this point not to link to the social media or GoFundMe sites of the individual patients, to protect their privacy. These two cases don't really sound like the same illness, whatever they are. - alert)
Woman gets mystery brain disease making growing group of people walk into walls - Mirror Online
And a summary of Ms. Cormier's illness, published in a Canadian source:
"A 20-year-old does not typically get symptoms of dementia" (canadaland.com)
----
(I'm making the decision at this point not to link to the social media or GoFundMe sites of the individual patients, to protect their privacy. These two cases don't really sound like the same illness, whatever they are. - alert)
sharon sanders
Editor-in-Chief & President
bump this
Another one of the 48 cases has been rediagnosed, possibly as Parkinson's disease:
Caraquet woman shocked she was removed from mystery disease cluster | CBC News
(Note that she claims onset in 2016; something that was not possible in any of the original reports. The reporting is murky and cases may be being double counted, but I suspect at least 12-14 of the original 48 cases have been rediagnosed. There's a ton of noise in the reporting, and a possible mass hysteria reaction to it, but the question remains whether something unusual explains a small portion of the illnesses.- alert)
Caraquet woman shocked she was removed from mystery disease cluster | CBC News
(Note that she claims onset in 2016; something that was not possible in any of the original reports. The reporting is murky and cases may be being double counted, but I suspect at least 12-14 of the original 48 cases have been rediagnosed. There's a ton of noise in the reporting, and a possible mass hysteria reaction to it, but the question remains whether something unusual explains a small portion of the illnesses.- alert)
sharon sanders
Editor-in-Chief & President
bump this
Another good summary of some of the important cases, including a bit of the previous medical history of Ms. Boucher and Ms. Porelle, but not much new information. Perhaps an awkwardly worded sentence suggesting more of the cases might have been excluded. The description of Ms. Cormier's condition seems to be a bit more functional than previous articles, which suggested she was bedridden and nearly non-verbal.
‘What’s going on with me?’ Canadian victims of mystery illness suffer alone | Canada | The Guardian
[snip]
But the province has already started advising those within the “cluster” they are no longer believed to have an unknown illness, even if those people still suffer from debilitating symptoms.
‘What’s going on with me?’ Canadian victims of mystery illness suffer alone | Canada | The Guardian
[snip]
But the province has already started advising those within the “cluster” they are no longer believed to have an unknown illness, even if those people still suffer from debilitating symptoms.
sharon sanders
Editor-in-Chief & President
bump this
Shiloh
Editor, Senior Moderator
Source: https://atlantic.ctvnews.ca/new-bru...ss-come-together-for-the-first-time-1.5779261
New Brunswickers impacted by mystery illness come together for the first time
Laura Lyall
CTV News Atlantic Videographer
Published Feb. 12, 2022 5:40 p.m. EST
For the first time on Saturday, those at the 'Centre of Mysterious Neurological Syndrome' in New Brunswick came together for an in-person meeting in Moncton to share stories and demand answers, and action, from the province.
"It really was meaningful and powerful and you know, this is going to be the start of a movement for answers. There is strength in numbers and I mean, we saw it today," says Steve Ellis, son of a patient with the disease.
Dozens of people attended the meeting, including the family of Gabrielle Cormier, who was diagnosed with the mystery illness at the age of 20...
New Brunswickers impacted by mystery illness come together for the first time
Laura Lyall
CTV News Atlantic Videographer
Published Feb. 12, 2022 5:40 p.m. EST
For the first time on Saturday, those at the 'Centre of Mysterious Neurological Syndrome' in New Brunswick came together for an in-person meeting in Moncton to share stories and demand answers, and action, from the province.
"It really was meaningful and powerful and you know, this is going to be the start of a movement for answers. There is strength in numbers and I mean, we saw it today," says Steve Ellis, son of a patient with the disease.
Dozens of people attended the meeting, including the family of Gabrielle Cormier, who was diagnosed with the mystery illness at the age of 20...