sharon sanders
Editor-in-Chief & President
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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
Shiloh
Editor, Senior Moderator
Source: https://globalnews.ca/news/8631670/new-brunswick-removing-patients-mystery-disease-cluster/
New Brunswick removing patients from supposed ‘mystery brain disease’ cluster
By Suzanne Lapointe Global News
Posted February 18, 2022 6:03 pm
More and more patients from the 48-person cluster of New Brunswick’s alleged “mysterious neurological disease” are receiving letters from the province telling them a committee of six neurologists have determined they do not suffer from the illness.
Steve Ellis’ father Roger Ellis received one such letter on Thursday.
The letter indicates his father, whose condition continues to decline, will still be treated by the Mind Clinic, and that he should follow up with his family doctor for more information...
New Brunswick removing patients from supposed ‘mystery brain disease’ cluster
By Suzanne Lapointe Global News
Posted February 18, 2022 6:03 pm
More and more patients from the 48-person cluster of New Brunswick’s alleged “mysterious neurological disease” are receiving letters from the province telling them a committee of six neurologists have determined they do not suffer from the illness.
Steve Ellis’ father Roger Ellis received one such letter on Thursday.
The letter indicates his father, whose condition continues to decline, will still be treated by the Mind Clinic, and that he should follow up with his family doctor for more information...
Another one of the 48 cases (who I don't believe we've seen mentioned by name before) which has reportedly been rediagnosed as due to a "rare sleep disorder", whatever that might mean:
Unknown disease: a young woman from Saint-Léolin shares her story - TurnedNews.com
(This case has been ill long enough that I would assume that is not a reference to FFI, as that illness is fatal within months. - alert)
Unknown disease: a young woman from Saint-Léolin shares her story - TurnedNews.com
(This case has been ill long enough that I would assume that is not a reference to FFI, as that illness is fatal within months. - alert)
sharon sanders
Editor-in-Chief & President
bump this
Shiloh
Editor, Senior Moderator
Source: https://atlantic.ctvnews.ca/report-...w-brunswick-to-be-released-thursday-1.5792915
Report on possible mystery brain disorder in New Brunswick to be released Thursday
The Canadian Press
Published Feb. 23, 2022 2:14 p.m. EST
FREDERICTON -
A report from an oversight committee studying possible cases of a mysterious neurological disease in New Brunswick will be released Thursday.
Families of the 48 patients identified by provincial health officials last summer as part of a possible cluster are to meet virtually with Health Minister Dorothy Shephard ahead of the report's publication.
However, in recent days, many of the 48 patients have received letters from the committee to say they don't have an unknown neurological condition and should contact their doctor for more details...
Report on possible mystery brain disorder in New Brunswick to be released Thursday
The Canadian Press
Published Feb. 23, 2022 2:14 p.m. EST
FREDERICTON -
A report from an oversight committee studying possible cases of a mysterious neurological disease in New Brunswick will be released Thursday.
Families of the 48 patients identified by provincial health officials last summer as part of a possible cluster are to meet virtually with Health Minister Dorothy Shephard ahead of the report's publication.
However, in recent days, many of the 48 patients have received letters from the committee to say they don't have an unknown neurological condition and should contact their doctor for more details...
This final 24 hour delay in releasing the results is odd. If they think this cluster is pure noise, why not release the results now? If they think there is something unusual in some of these cases, why not warn us about it now?
The only thing I can think of is that a small number of these cases have some kind of unusual history or exposure (that is not an ongoing risk) and tomorrow's announcement will reduce the number of unexplained illnesses to a small number, perhaps fewer than 10, excluding the other cases simply because of the lack of that exposure.
The only thing I can think of is that a small number of these cases have some kind of unusual history or exposure (that is not an ongoing risk) and tomorrow's announcement will reduce the number of unexplained illnesses to a small number, perhaps fewer than 10, excluding the other cases simply because of the lack of that exposure.
sharon sanders
Editor-in-Chief & President
bump this
Still waiting for today's report, but this is the one from October which I just found:
Investigation into a Neurological Syndrome of Unknown Cause (gnb.ca)
Notably, only 20 of the 34 cases surveyed had onset since 2018, with some cases having had onset as early as 1997. This was not in any of the media reports. Also, 7 of them report a history of head trauma, a number that seems unusually high for the population as a whole. (Is it possible that the revised case definition is going to require head trauma, and cases are being excluded for lack of it?)
Investigation into a Neurological Syndrome of Unknown Cause (gnb.ca)
Notably, only 20 of the 34 cases surveyed had onset since 2018, with some cases having had onset as early as 1997. This was not in any of the media reports. Also, 7 of them report a history of head trauma, a number that seems unusually high for the population as a whole. (Is it possible that the revised case definition is going to require head trauma, and cases are being excluded for lack of it?)
The report has been released and says there is no mystery illness, and that all cases are due to various known illnesses:
Oversight committee rules out mysterious brain disease in New Brunswick | northeastNOW
Oversight committee rules out mysterious brain disease in New Brunswick | northeastNOW
New Brunswick, Canada, mystery brain disease: Report finds no new disorder - The Washington Post
[snip]
“The oversight committee has unanimously agreed that these 48 people should never have been identified as having a neurological syndrome of unknown cause, and that based on the evidence reviewed, no such syndrome exists," said Jennifer Russell, chief medical officer of health for the Canadian province. "Public Health concurs with these findings. But I stress again, this does not mean that these people aren’t seriously ill. It means they are ill with a known neurological condition.”
[snip]
The committee said that a confirmed case must involve rapidly progressing dementia, at least four clinical features with most manifesting within the first 18 to 36 months of the illness, one or more supporting investigations and insufficient evidence for another diagnosis. None of the cases met the threshold.
[snip]
“The oversight committee has unanimously agreed that these 48 people should never have been identified as having a neurological syndrome of unknown cause, and that based on the evidence reviewed, no such syndrome exists," said Jennifer Russell, chief medical officer of health for the Canadian province. "Public Health concurs with these findings. But I stress again, this does not mean that these people aren’t seriously ill. It means they are ill with a known neurological condition.”
[snip]
The committee said that a confirmed case must involve rapidly progressing dementia, at least four clinical features with most manifesting within the first 18 to 36 months of the illness, one or more supporting investigations and insufficient evidence for another diagnosis. None of the cases met the threshold.
Updated:
Cluster of Neurological Syndrome (gnb.ca)
[snip]
Following these reports, all the patients were excluded from the cluster and the Minister of Health has accepted the conclusion that no such neurological syndrome of unknown cause exists in New Brunswick.
-----------
The final report:
final-report.pdf (gnb.ca)
After completing the review of records, neurologists provided potential alternative diagnoses for 41 patients (85%). The alternate diagnoses provided included some known conditions like Alzheimer’s disease, Lewy body dementia, mixed dementia, diabetic or inflammatory polyneuropathy, Parkinson disease dementia, frontotemporal dementia, alcohol related cerebellar dysfunction, post-concussion syndrome, chronic traumatic encephalopathy, paranoid schizophrenia, chronic Fatigue Syndrome, Chronic severe anxiety disorder, and cancer. In addition, for the ten patients who are deceased, diagnoses have been confirmed by autopsy or by the review of medical records and has provided sufficient evidence of an alternative diagnosis.
--------------
(Still no hint of what alternative diagnosis has been suggested for Ms. Cormier. None of the specified ones in the above paragraph seem to fit. - alert)
Cluster of Neurological Syndrome (gnb.ca)
[snip]
Following these reports, all the patients were excluded from the cluster and the Minister of Health has accepted the conclusion that no such neurological syndrome of unknown cause exists in New Brunswick.
-----------
The final report:
final-report.pdf (gnb.ca)
After completing the review of records, neurologists provided potential alternative diagnoses for 41 patients (85%). The alternate diagnoses provided included some known conditions like Alzheimer’s disease, Lewy body dementia, mixed dementia, diabetic or inflammatory polyneuropathy, Parkinson disease dementia, frontotemporal dementia, alcohol related cerebellar dysfunction, post-concussion syndrome, chronic traumatic encephalopathy, paranoid schizophrenia, chronic Fatigue Syndrome, Chronic severe anxiety disorder, and cancer. In addition, for the ten patients who are deceased, diagnoses have been confirmed by autopsy or by the review of medical records and has provided sufficient evidence of an alternative diagnosis.
--------------
(Still no hint of what alternative diagnosis has been suggested for Ms. Cormier. None of the specified ones in the above paragraph seem to fit. - alert)
From the Guardian, the source that generated the loud alarm back in early January. Dr. Marrero seems very upset by today's announcement.
Victims dismayed as Canadian inquiry finds mystery syndrome does not exist | Canada | The Guardian
[snip]
Marrero wrote that he had a backlog of 100 patients referred to him by other doctors whose symptoms appeared to fit the case description, but lacked the resources to investigate each case. Marrero wrote that he was “quite concerned” by how many young people were in that backlog of cases.
Officials at Thursday’s press conference disputed they had been advised that multiple households had more than one member showing neurological symptoms. But Marrero’s letter warned of at least 12 households with multiple cases, a finding he said raised concerns over “potential human-to-human transmission or a possible common root cause” of the suspected illness.
“With these latest developments, I am concerned for my patients and, from a public health standpoint, for the general population,” he wrote. “I believe there is an urgency to act promptly and use all means necessary to investigate and get to the roots cause or causes of the above issues.”
Kat Lanteigne, executive director of Bloodwatch, said officials presenting the report had “misled the public” about the scope of possible cases, and said the latest report lacked scientific rigour.
“It’s a sham. It’s an absolute public health sham,” said Kat Lanteigne, executive director of Bloodwatch. “They haven’t done any additional testing. They have not tested for neurotoxins. They did not run a control group for their epidemiological study. Their data is wholly insufficient.”
Experts have previously told the Guardian it is possible for patients to have known diseases that are triggered by a common cause.
Victims dismayed as Canadian inquiry finds mystery syndrome does not exist | Canada | The Guardian
[snip]
Marrero wrote that he had a backlog of 100 patients referred to him by other doctors whose symptoms appeared to fit the case description, but lacked the resources to investigate each case. Marrero wrote that he was “quite concerned” by how many young people were in that backlog of cases.
Officials at Thursday’s press conference disputed they had been advised that multiple households had more than one member showing neurological symptoms. But Marrero’s letter warned of at least 12 households with multiple cases, a finding he said raised concerns over “potential human-to-human transmission or a possible common root cause” of the suspected illness.
“With these latest developments, I am concerned for my patients and, from a public health standpoint, for the general population,” he wrote. “I believe there is an urgency to act promptly and use all means necessary to investigate and get to the roots cause or causes of the above issues.”
Kat Lanteigne, executive director of Bloodwatch, said officials presenting the report had “misled the public” about the scope of possible cases, and said the latest report lacked scientific rigour.
“It’s a sham. It’s an absolute public health sham,” said Kat Lanteigne, executive director of Bloodwatch. “They haven’t done any additional testing. They have not tested for neurotoxins. They did not run a control group for their epidemiological study. Their data is wholly insufficient.”
Experts have previously told the Guardian it is possible for patients to have known diseases that are triggered by a common cause.
sharon sanders
Editor-in-Chief & President
bump this
New Brunswick families demand more testing and research into why so many are suffering from neurological illnesses | CTV News
(This is probably the right question to be asking now. The investigation now shifts from "What illness do these people have?" to "Why do so many people have so many different illnesses?" Also, Ms. Cormier is headed to Toronto in March for further testing. If anyone knows what she has, the media has not been made aware of it.
I'd still like to see some testing for mercury levels, as mercury is a known neurotoxin. - alert)
(This is probably the right question to be asking now. The investigation now shifts from "What illness do these people have?" to "Why do so many people have so many different illnesses?" Also, Ms. Cormier is headed to Toronto in March for further testing. If anyone knows what she has, the media has not been made aware of it.
I'd still like to see some testing for mercury levels, as mercury is a known neurotoxin. - alert)
sharon sanders
Editor-in-Chief & President
bump this
Shiloh
Editor, Senior Moderator
Source: https://www.cbc.ca/news/canada/new-brunswick/russell-complaint-steve-ellis-mystery-disease-1.6397887
Complaint filed over N.B. top doctor's handling of mystery brain disease investigation
Man whose father was originally identified as one of 48 cases alleges Dr. Russell 'violated code of ethics'
Marie Sutherland · CBC News · Posted: Mar 26, 2022 10:00 AM AT | Last Updated: 6 hours ago
A Nova Scotia man has filed a complaint against New Brunswick's top doctor over her handling of the investigation of a mystery neurological syndrome.
Steve Ellis, whose father, Roger Ellis, was initially identified as one of the 48 confirmed cases of the mystery syndrome first made public a year ago, alleges Dr. Jennifer Russell "violated the code of ethics of her profession" during the investigation.
He alleges Russell "did not communicate in a transparent manner," "misled my father as a patient," "withheld information that my father had a right to obtain," and provided inaccurate information to families in a private meeting "initiated by her office and [Health] Minister Dorothy Shephard."
Ellis also alleges that his father was never seen in person by the oversight committee that later took over the investigation, although they later suggested several "possible" explanations for his symptoms.
The complaint was filed with the College of Physicians and Surgeons of New Brunswick on Thursday.
Asked for comment on the complaint and its allegations on Friday, Public Health spokesperson Bruce Macfarlane said Russell "has yet to receive any correspondence related to this kind of complaint."...
Complaint filed over N.B. top doctor's handling of mystery brain disease investigation
Man whose father was originally identified as one of 48 cases alleges Dr. Russell 'violated code of ethics'
Marie Sutherland · CBC News · Posted: Mar 26, 2022 10:00 AM AT | Last Updated: 6 hours ago
A Nova Scotia man has filed a complaint against New Brunswick's top doctor over her handling of the investigation of a mystery neurological syndrome.
Steve Ellis, whose father, Roger Ellis, was initially identified as one of the 48 confirmed cases of the mystery syndrome first made public a year ago, alleges Dr. Jennifer Russell "violated the code of ethics of her profession" during the investigation.
He alleges Russell "did not communicate in a transparent manner," "misled my father as a patient," "withheld information that my father had a right to obtain," and provided inaccurate information to families in a private meeting "initiated by her office and [Health] Minister Dorothy Shephard."
Ellis also alleges that his father was never seen in person by the oversight committee that later took over the investigation, although they later suggested several "possible" explanations for his symptoms.
The complaint was filed with the College of Physicians and Surgeons of New Brunswick on Thursday.
Asked for comment on the complaint and its allegations on Friday, Public Health spokesperson Bruce Macfarlane said Russell "has yet to receive any correspondence related to this kind of complaint."...
Scientist looking for connection between brain illness in N.B., geography | CBC News
Scientist looking for connection between brain illness in N.B., geography
Survey volunteers needed, and anyone who's lived in New Brunswick in the last 20 years is eligible
[snip]
Scientist looking for connection between brain illness in N.B., geography
Survey volunteers needed, and anyone who's lived in New Brunswick in the last 20 years is eligible
[snip]
https://www.cbc.ca/news/canada/new-brunswick/marrero-nb-mind-clinic-1.6534670
Moncton neurologist sidelined from brain disease probe will soon be gone from MIND clinic
Dr. Alier Marrero raised alarm bells about patients with unusual, progressive neurological symptoms
[snip]
(Read the whole article. It mentions a pair of possibly linked cases that we hadn't seen before in this thread, a man and his step-daughter, where the younger patient's illness is thought to be the result of a concussion.)
Moncton neurologist sidelined from brain disease probe will soon be gone from MIND clinic
Dr. Alier Marrero raised alarm bells about patients with unusual, progressive neurological symptoms
[snip]
(Read the whole article. It mentions a pair of possibly linked cases that we hadn't seen before in this thread, a man and his step-daughter, where the younger patient's illness is thought to be the result of a concussion.)
‘Mysterious’ brain disorder strikes hundreds — and cases are increasing
Across the Canadian province of New Brunswick, the number of people afflicted by a mysterious, potentially deadly brain ailment keeps growing.
Neurological symptoms like hallucinations, muscle wasting, vision problems, memory loss, and abnormal movements were seen in 2015 in a small cluster of patients, eventually growing to 48 cases.
But some health experts and local residents say the number of people with the condition is much higher — and may exceed 200.
In addition, an unusual number of those cases are in young people, who do not typically show dementia-like symptoms or signs of other neurological problems.
https://nypost.com/2023/07/03/mysterious-brain-disorder-strikes-hundreds-cases-keep-growing/
Across the Canadian province of New Brunswick, the number of people afflicted by a mysterious, potentially deadly brain ailment keeps growing.
Neurological symptoms like hallucinations, muscle wasting, vision problems, memory loss, and abnormal movements were seen in 2015 in a small cluster of patients, eventually growing to 48 cases.
But some health experts and local residents say the number of people with the condition is much higher — and may exceed 200.
In addition, an unusual number of those cases are in young people, who do not typically show dementia-like symptoms or signs of other neurological problems.
https://nypost.com/2023/07/03/mysterious-brain-disorder-strikes-hundreds-cases-keep-growing/