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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 known causes

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  • #31
    bump this

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    • #32
      A woman with a mysterious brain disease developed memory loss, a stutter, and tremors. She goes to bed every night in fear. (msn.com)

      The case history of one of the patients, a 75 year old woman with onset in January 2020 and a negative CJD test.

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      • #33
        Cluster of neurological syndrome of unknown cause - Canada - 2013-2020

        Opening date: 10 May 2021 Latest update: 12 May 2021

        Epidemiological summary

        A cluster of neurological syndrome of unknown cause has been reported in New Brunswick, Canada. As of 6 May 2021, 48 cases have been reported, including six deaths. In some cases, more information is needed to determine if the cause of death was a result of this syndrome. Most cases have dates of symptom onset between 2018-2020, except for one case who experienced symptoms in 2013, the gender ratio is 1:1 and age ranges between 18 and 85 years.

        Most cases live in the south-eastern and north-eastern regions of New Brunswick, around the Acadian Peninsula and Moncton areas. However, there is no evidence so far suggesting that residents of these regions are at higher risk. Some symptoms include memory problems, muscle spasms, balance issues, difficulty walking or falls, blurred vision or vision hallucinations, unexplained and significant weight loss, behaviour changes, and pain in the upper or lower limbs. A case definition was finalised on 5 March 2021 and sent to New Brunswick physicians to encourage case finding.

        The Public Health Agency of Canada's Creutzfeldt-Jakob Disease Surveillance System (CJDSS) has actively investigated the possibility of human prion disease but to date all tests have been negative for known forms of human prion disease.

        There is an ongoing investigation from the authorities.

        Source: Canadian local health authorities

        ECDC assessment
        More information is needed to better assess this event. EU/EEA citizens living in or travelling to New Brunswick, Canada, are advised to contact their healthcare provider if they experience symptoms described in this cluster to determine whether they may be related to this cluster investigation.

        https://www.ecdc.europa.eu/sites/def...5-may-2021.pdf
        ?Addressing chronic disease is an issue of human rights ? that must be our call to arms"
        Richard Horton, Editor-in-Chief The Lancet

        ~~~~ Twitter:@GertvanderHoek ~~~ GertvanderHoek@gmail.com ~~~

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        • #34
          Source: https://www.cbc.ca/news/canada/new-b...aire-1.6043062

          Public Health begins surveying members of mystery brain disease cluster
          Luc LeBlanc hopes the questionnaire provides answers, but worries the clock is ticking
          Karissa Donkin, Maeve McFadden · CBC News · Posted: May 28, 2021 5:00 AM AT | Last Updated: 6 hours ago

          New Brunswick Public Health has started contacting people who have been diagnosed with a mystery brain disease to answer a questionnaire that they hope will yield vital clues about what's causing the illness.

          That comes nearly four months after Public Health said it first drafted a case definition for the neurological illness, which has so far taken six lives and has sickened at least 48 people in total, primarily around the Acadian Peninsula and Moncton areas.

          For patients and their families dealing with a disease where symptoms only get worse with time, four months is an excruciatingly long wait...

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          • #35

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            • #36
              N.B. health minister says investigation into mysterious brain syndrome continues | CTV News

              [snip]

              Shephard said the clinic now has 81 registered patients since it opened in the spring, although only the original 48 are being studied by an expert committee. "Those first 48 are going to help us determine the path we need to go forward with -- either a potential diagnosis or the potential of going forward with an unknown neurological syndrome," she said.

              [snip]

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              • #37
                bump this

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                • #38
                  What can a medical mystery from Guam teach New Brunswick about its own strange, deadly disease?

                  A neurological syndrome that’s killed several New Brunswickers has stumped doctors, but researchers are looking at an algae-based toxin – and a decades-old, inconclusive debate about its effects – as a possible factor

                  WENCY LEUNGHEALTH REPORTER
                  PUBLISHED 7 HOURS AGO
                  UPDATED AUGUST 18, 2021

                  They called it lytico-bodig. As the Second World War drew to a close, U.S. military doctors stationed on Guam noticed many of the Pacific island’s Chamorro people were suffering from a baffling and devastating illness.

                  The local name for the progressive and fatal disease – said to have come from the Spanish “paralytico” – provided a label for what Islanders described as an illness that disconnects one from one’s family. It captured a constellation of symptoms, including muscle wasting, paralysis, muscle rigidity, shaking, confusion and memory loss. Doctors and researchers observed this strange illness shared characteristics of amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease), Parkinson’s disease and Alzheimer’s disease, and they clamoured to try to understand it, with the hope it would shed light on other neurodegenerative disorders.
                  ...
                  The disease was still a mystery when Canadian chemist Susan Murch travelled to Guam as a postdoctoral fellow in 2003 to study a neurotoxin researchers believed might hold the key to solving the puzzle. What she and the scientists she worked with discovered there provided not only what they considered a possible source of the illness, but may also offer clues to a new medical mystery in New Brunswick, where dozens of people have developed unexplained neurological symptoms.

                  Dr. Murch, working with principal investigator Paul Cox, a U.S. ethnobotanist, found that a toxin produced by blue-green algae called beta-methylamino-L-alanine, or BMAA, was present in cycad trees, a source of food for the island’s residents. They found the same toxin in the animals residents consumed, such as pigs, deer and bats that ate the seeds, fruit and other parts of the cycad plants. And they also found it in the brain tissue of several Chamorro patients who died of the mysterious disease.

                  Dr. Cox, together with famed British neurologist Oliver Sacks, hypothesized that neurotoxic BMAA, the amounts of which were magnified as people consumed animals at higher levels of the food chain, might offer a long-sought explanation for what was causing damage to people’s bodies and brains. Today, that hypothesis is still debated. But investigators of the new illness in New Brunswick are revisiting the work of Dr. Murch and her colleagues.
                  ...
                  “We’re not saying that we have that disease,” said Alier Marrero, a neurologist at Dr. Georges-L.-Dumont University Hospital Centre in Moncton, who is leading a special clinic for those affected. The symptoms of his own patients, which include pain, hallucinations, severe insomnia and visual disturbances, are not exactly the same as the ones experienced by those on Guam, he said. “But there could be a significant or similar link to an environmental factor that, if identified, it could be prevented or stopped. That’s our hope.”
                  ...
                  A neurological syndrome that’s killed several New Brunswickers has stumped doctors, but researchers are looking at an algae-based toxin – and a decades-old, inconclusive debate about its effects – as a possible factor
                  "Safety and security don't just happen, they are the result of collective consensus and public investment. We owe our children, the most vulnerable citizens in our society, a life free of violence and fear."
                  -Nelson Mandela

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                  • #39
                    This is a mechanism for how this toxin might be producing this illness.

                    I'm renaming this thread now to get the incorrect diagnosis out of the title; if this was CJD, you'd have a lot more than 6 deaths in 48 cases as CJD is uniformly fatal. While a couple of these cases might be coincidental CJD infections, CJD is not the cause of the wider outbreak.

                    ViewPoint: Sault Ste. Marie , Blue-Green Algae and New Brunswick Neurological Desease | SaultOnline.com

                    [snip]

                    The body mistakes BMAA for the amino acid L-serine, a naturally occurring component of proteins.

                    When the toxin is mistakenly inserted into proteins in brain cells in place of L-serine, they become “misfolded,” meaning they no longer function properly, leading to neuronal meltdown.

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                    • #40
                      Source: https://journals.lww.com/neurotodayo...rologic.1.aspx


                      New Questions About a Mysterious Neurologic Cluster in Canada
                      By Dan Hurley
                      September 2, 2021

                      Article In Brief

                      Forty-eight people, including six who have died, have been identified as having a cluster of unknown neurologic disease in the province of Alberta in Canada. But independent experts question the validity of such a cluster, raising the possibility that the cases are functional neurologic disorders.

                      ...Dozens of media outlets, local and international, have reported on news of the mysterious cluster, and some patients have expressed fears of living in a province with a “mysterious brain disease.”

                      Alier Marrero, MD, the neurologist who diagnosed and deemed the cases to be part of a cluster, told Neurology Today, “Currently our clinic is following over a hundred cases. And we have received dozens of communications. We've had referrals from other provinces in Canada, and also some in the United States.”

                      Dr. Marrero, an assistant professor of clinical neurology at Sherbrooke University and a member of the Canadian ALS Scientific Committee and the Canadian Network of Neuromuscular Diseases, said no cause has yet been found. “It's obvious that this is acquired,” he said. “Anybody who is exposed could have it.”

                      Yet an investigation by Neurology Today—including interviews with patients, family members, the president of the Canadian Institutes of Health Research (CIHR), and neurologists on the oversight committee appointed to review the matter—raises questions about the validity of the cluster.

                      Determining “whether this is a single neurological disorder or various disorders...is one of the main goals of the Oversight Committee,” stated an email from the committee in response to written questions from Neurology Today. “It is too early to answer this question.”...

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                        This is the importance of getting a good case definition. If you're going to include any patient anywhere in North America with unexplained neurological symptoms, you're going to catch an awful lot of cancer, Alzheimer's, ALS, encephalitis, etc. in your definition. I would think the case definition should require exposure in New Brunswick itself.

                        While it is possible that this is a false cluster caused by unrelated illnesses in geographical proximity, several of these cases are unusual enough to require individual diagnosis; the 20 year old college student in particular is difficult to explain due to more common causes.

                    • #41
                      A long article summarizing what is known to this point:

                      Inside the murky, high-stakes investigation into New Brunswick's mystery illness - Macleans.ca

                      The most notable things I see is that the five autopsies done so far show different kinds of disease process in the brain, suggesting this is not a single illness, and also the report that unrelated people who are living together have been affected, suggesting some kind of exposure and not a genetic condition.

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                      • #42
                        Source: https://globalnews.ca/news/8327861/m...gerard-jansen/


                        Cause of eight N.B. ‘mystery’ brain disease deaths identified by pathologist
                        By Kevin Bissett The Canadian Press
                        Posted October 26, 2021 8:09 pm

                        A neuropathologist who examined the deaths of eight people in New Brunswick initially described as having a mysterious neurological disease says the deaths were actually due to known diseases.

                        A summary of the study led by Dr. Gerard Jansen of the University of Ottawa, posted this month on the Canadian Association of Neuropathologists website, says the original cases were “misclassified clinical diagnoses.”

                        In March, New Brunswick health officials alerted the province’s doctors, nurses and pharmacists about a cluster of residents with an unknown and potentially new neurological syndrome with symptoms similar to those of Creutzfeldt-Jakob disease.

                        Jansen’s study indicates that those who died had diseases that included known neurodegenerative diseases and cancers...

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                        • #43
                          New Brunswick’s Mystery Disease: Why Did the Province Shut Out Federal Experts?

                          The provincial government’s closed-door investigation has confused experts, stoked fears, and missed an opportunity to solve a possible new brain disorder

                          BY MATTHEW HALLIDAY
                          PHOTOGRAPHY BY CHRIS DONOVAN
                          Updated 20:24, Oct. 25, 2021 | Published 15:43, Oct. 22, 2021

                          IN JANUARY 2020, Alier Marrero, a neurologist in Moncton, New Brunswick, began examining a patient he’d been referred—an eighteen-year-old woman named Gabrielle Cormier from Dalhousie Junction, a small town in the province’s far north.

                          Her case was bewildering: as a high school student, she started to have difficulty reading, especially on computer screens, where letters appeared hazy and indistinct. By grade twelve, in 2019, her concentration flagged and she was losing strength in her lower body. A few months before graduating, she collapsed at school. An ER doctor chalked it up to a panic attack, but within weeks, she had developed tingling sensations in her legs; over the summer, they turned a sickly grey. In the fall, while studying biology at New Brunswick’s Mount Allison University, Cormier felt her disorientation and mental fog worsening, and her exhaustion grew debilitating.

                          That winter, Marrero performed a gauntlet of exams: cognition tests, memory tests, blood tests, and scans including EEG, MRI, VEP, and SPECT (a nuclear-imaging test in which a radioactive tracer is injected into the bloodstream). By then, Cormier was having difficulty walking and her vision problems had turned hallucinatory—a fluctuating field across her line of sight that she compares to TV static.

                          On Valentine’s Day 2020, Cormier underwent a spinal tap for signs of Creutzfeldt-Jakob disease (CJD), a fatal, swiftly developing disorder caused when brain proteins called prions misfold into an abnormal form. Cormier’s spinal fluid came back clean for CJD, however, as did the other tests, with two exceptions: an EEG showing diminished electrical activity in the brain and a SPECT showing reduced cerebral blood flow. Both suggested neurological impairment, but neither pointed, by itself, to any known illness.

                          Baffling as it was, Cormier’s condition was familiar to Marrero. A Cuban-born neurologist, he had worked in Moncton since 2012 and, in recent years, had seen more and more patients—often unusually young, equally men and women—displaying bizarre signs of neurological decline. In many cases, the symptoms developed with excruciating speed but began almost inconspicuously with behavioural changes, sleep disturbances, or inexplicable pain. Then came memory difficulties, muscle wasting, and difficulty balancing. Many patients experienced visual hallucinations—some relatively benign (Cormier’s TV static), others unsettling (looming shadows), some nightmarish. There were auditory hallucinations: music, breaking objects, distant voices. Eventually, dementia appeared; even some youthful patients experienced a state akin to late-stage Alzheimer’s. Some developed Capgras delusion, the belief that loved ones have been replaced by impostors. The only universal symptom was myoclonus: chronic muscle spasms so severe that spouses often couldn’t share a bed. Some patients eventually progressed to akinetic mutism: they were unable to speak or move but still experienced spasms.

                          The symptoms, terrifying and incapacitating, appeared to be expressions of a sickness with no name and no known provenance.
                          ...
                          The provincial government’s closed-door investigation has confused experts, stoked fears, and missed an opportunity to solve a possible new brain disorder
                          "Safety and security don't just happen, they are the result of collective consensus and public investment. We owe our children, the most vulnerable citizens in our society, a life free of violence and fear."
                          -Nelson Mandela

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                          • #44
                            Now 9 deaths. Eight of them confirmed due to known illnesses such as cancer and Alzheimers. Suspicion that this is not a single illness.

                            Public Health now questioning 'validity' of New Brunswick's mystery brain disease | CBC News

                            Also:

                            [snip]

                            The report also found 12 of the 34 people "had family members or close contacts who were experiencing similar symptoms," though it's not clear what the significance of that might be.

                            (Is this a sign of casting too wide a net, or a sign that despite the misdiagnosed fatalities, there might be something else going on here? - alert)

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                            • #45
                              Eight people from N.B. mystery illness cluster may have been misdiagnosed, new research says | CBC News

                              [snip]

                              Jansen's abstract says his findings show the eight people died from a variety of causes, including cancer, Lewy body dementia and Alzheimer's disease.

                              "In these eight patients no evidence for a prion disease was found, nor novel pathology," the abstract says.

                              "We suggest that these eight patients represent a group of misclassified clinical diagnoses."

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