Announcement

Collapse
No announcement yet.

Canada - New Brunswick monitoring more than 40 cases of unknown neurological disease - similarities to Creutzfeldt-Jakob disease - 2015+

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Canada - New Brunswick monitoring more than 40 cases of unknown neurological disease - similarities to Creutzfeldt-Jakob disease - 2015+

    Source: https://www.cbc.ca/news/canada/new-b...alth-1.5953478

    New Brunswick monitoring more than 40 cases of unknown neurological disease
    Memo sent to health-care professionals in province says symptoms are similar to Creutzfeldt-Jakob disease
    CBC News ? Posted: Mar 17, 2021 5:22 PM AT | Last Updated: 1 hour ago

    Public Health is closely monitoring a cluster of more than 40 New Brunswick patients with symptoms similar to those of Creuzfeldt-Jakob disease, a rare and fatal brain disease.

    In an internal memo obtained by Radio-Canada, sent on March 5 by the office of the chief medical officer of health to the New Brunswick Medical Society and to associations of doctors and nurses, the department notes the existence of a cluster of 42 cases of a progressive neurological syndrome of unknown origin.

    A first case was diagnosed in 2015, according to the memo. Three years later, in 2019, 11 additional cases were discovered, 24 more cases in 2020 and another six cases in 2021. Five people have died.

    The disease affects all age groups and appears to be concentrated in the Acadian Peninsula in northeast New Brunswick and the Moncton region in the southeast.

    "We are collaborating with different national groups and experts; however, no clear cause has been identified at this time," the memo states...

  • #2
    Source: http://www.digitaljournal.com/life/h...article/587300

    What's happening today with N.B.'s mystery neurological disease

    By Karen Graham 4 hours ago in Health
    Experts in brain diseases say there are many unanswered questions about a possible degenerative neurological syndrome recently disclosed by New Brunswick health officials. Many people are worried and want to know how concerned they need to be...

    ...Well, about a year ago, teams of researchers, scientists, and epidemiologists began gathering, at the federal and provincial levels to further investigate the disease. There is one thing the researchers do know, according to Dr. Cashman. "All the evidence, he said, points to this not being a prion disease such as Creutzfeldt-Jakob disease."

    "There is no evidence, not a hint ? even in the three autopsies that have been performed ? of a human prion disease. That came as a surprise to me, frankly," he said. "So in essence, this is something new, and we need to get on the stick and figure out what this is."

    Because they know that the disease is likely not a prion disease, then this leaves researchers looking at other - including unknown - neurological disorders and environmental toxins, says Cashman.

    One possible culprit might be B-methylamino-L-alanine (BMAA), an environmental toxin made by certain bacteria that can accumulate in fish and shellfish...

    Comment


    • #3
      Here's some recent research on that toxin and bioaccumulation in alfalfa.

      https://www.sciencedirect.com/scienc...4765132031352X
      _____________________________________________

      Ask Congress to Investigate COVID Origins and Government Response to Pandemic H.R. 834

      i love myself. the quietest. simplest. most powerful. revolution ever. ---- nayyirah waheed

      (My posts are not intended as advice or professional assessments of any kind.)
      Never forget Excalibur.

      Comment


      • #4
        bump this

        Comment


        • #5
          Where exactly are N.B.'s mystery neurological disease cases? Public health agencies won't say
          ...
          Marie Sutherland ? CBC News ? Posted: Mar 22, 2021 5:58 PM AT | Last Updated: March 22
          ...
          N.B.'s mystery disease: What we know so far

          What is it?

          An unknown neurological disease with similarities to Creutzfeldt-Jakob disease, a rare and fatal brain disease

          When was it discovered?

          A single case was diagnosed in 2015. Three years later, in 2019, 11 additional cases were discovered, with 24 more cases discovered in 2020 and another six in 2021. Five people have died.
          When was it made public?

          A March 5 internal memo from Public Health to health-care professionals was obtained by Radio-Canada and reported by Radio-Canada and CBC News on Wednesday, March 17.

          Where are the cases?

          The disease has so far only been identified in New Brunswick. It appears to be concentrated on the Acadian Peninsula in northeast New Brunswick and the Moncton region in the southeast.
          How many cases are there?

          Forty-three cases have been identified. Of those, 35 are on the Acadian Peninsula and eight are in the Moncton region.

          Who has been affected?

          The disease affects all age groups and affects males and females equally, according to the Public Health memo. About half of the affected individuals are between 50 and 69 years of age.

          What are the symptoms?

          Symptoms include changes in behaviour, sleep disturbances, unexplained pain, visual hallucinations, co-ordination problems and severe muscle and brain atrophy.
          Is it contagious?

          Because the cause has not been determined, it is not yet known whether the disease is contagious.

          What are the possible causes being researched?

          Despite many similarities, tests for Creutzfeldt-Jakob disease have so far ruled out known prion diseases.
          Scientists are currently looking into the possibility that this is a new variant of a prion disease ? or a new disease entirely.
          Neurologists and scientists suspect the cause might be exposure to an as-yet-undetermined environmental toxin.
          ...

          https://www.cbc.ca/news/canada/new-b...hart-1.5959280
          "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

          Comment


          • #6
            I wish the articles would give more insight on the epidemiology of these cases. Is the 2015 case still alive? If so, where has it been for the past 6 years? If not, was an autopsy conducted to rule out a coincidental case of sporadic (or variant) CJD? Have any of the more recent cases had contact with the earlier case, or with each other? Have the CJD tests conducted looked for the variant prions or just the classical ones? Have any of the cases had travel history outside North America?

            My understanding is that CJD can only be confirmed at autopsy by dissecting the brain, which would leave at most 4-5 cases having being conclusively ruled out as CJD. There are a wide variety of ways to produce a CJD cluster, ranging from tissue/organ donations of an infected patient to consumption of infected animal tissue.

            At least some of the 2019 cases are still alive, at least 15 months post diagnosis. How are they doing? Has anyone recovered completely (something CJD cases don't do)? Are any of the cases HCW? Is it possible that this is a pseudo-outbreak caused by multiple things, including CJD? What is the expected number of CJD cases in the population as a whole?

            What is the COVID status of these cases? Assuming the 2015 case is not related, could this be a long-term consequence of COVID infection? Thoughts of the Encephalitis lethargica and 1918 pandemic flu come to mind.

            More questions than answers here.

            Comment


            • Emily
              Emily commented
              Editing a comment
              Sounds like diagnosis can be done while patients are alive now either via biopsy or CSF markers.

              https://onlinelibrary.wiley.com/doi/...1002/ccr3.2807
              Comatose within 6 weeks, but still alive after 3 years, Creutzfeldt?Jakob disease with unusual progression

              Patient was seen and most of the work done for this paper at: Adventist Health White Memorial, 1720 Cesar Chavez Ave, Los Angeles, CA 90033.
              First published: 19 April 2020
              "The gold standard diagnosis is confirmation by brain biopsy, but due to restrictions for operating room sterilizations, low sensitivity, high morbidity, and the fact that the positive result does not change the treatment in most cases, brain biopsy is not routinely done. It is very important to rule out treatable diseases in differential diagnosis such as meningitis, meningoencephalitis, CNS vasculitis, hypothyroidism, sarcoidosis, toxicities, paraneoplastic syndromes, and primary neoplasms. Our case depicts a case CJD in a fully functional patient who declined to a comatose state in 6 weeks. Although negative on initial workup, CSF 14?3?3 protein, and RT?QulC became positive well over 6 weeks into his illness. "

          • #7
            New Brunswick Green leader seeks answers from minister on mysterious brain disease | CTV News

            [snip]

            "There are about 48,000 people in the Acadian Peninsula but we don't know if it is concentrated in one or more places," he said.

            Godin said people want to know if they should stop eating deer and moose meat in case that's the cause. He said the government should provide all the information it has.

            Comment


            • #8
              Apparently, only 3 of the 5 fatalities have been autopsied:

              How researchers are tracking down N.B.'s mystery neurological disease | CBC News

              Median age appears to be 58. Median age in the vCJD outbreaks in the UK was in the 30s, I believe. Also, report that this does not appear treatable, indicating that there probably haven't been any recoveries:

              A Q&A with New Brunswick?s top doctor on the mysterious brain disease | Globalnews.ca

              Comment


              • #9
                Published Date: 2021-03-23 12:24:19
                Subject: PRO/EDR> Undiagnosed neurological illness - Canada: (NB) fatal, RFI
                Archive Number: 20210323.8256422

                UNDIAGNOSED NEUROLOGICAL ILLNESS - CANADA: (NEW BRUNSWICK) FATAL, REQUEST FOR INFORMATION
                ************************************************** ***************************************
                A ProMED-mail post
                http://www.promedmail.org
                ProMED-mail is a program of the
                International Society for Infectious Diseases
                http://www.isid.org

                [1]
                Date: Mon 22 Mar 2021
                Source: CBC (Canadian Broadcasting Corporation) News [abridged, edited]
                https://www.cbc.ca/news/canada/new-b...hart-1.5959280


                News last week [week of 15 Mar 2021] that a cluster of cases of an unknown neurological disease has been found in New Brunswick immediately had residents of several communities on edge.

                First diagnosed in 2015, according to a Public Health memo sent this month [March 2021] to medical professionals, the disease appears to be concentrated in the Acadian Peninsula in northeast New Brunswick and the Moncton region in the southeast. 3 cases have been identified, and 5 people have died.

                Although the mystery illness has similarities to Creutzfeldt-Jakob disease, known as CJD, a rare and fatal brain disease, the memo noted that "testing for CJD so far has ruled out known prion diseases."

                But there's been little further information provided by Public Health, and on Saturday [20 Mar 2021], peninsula mayors said the lack of information has fuelled rampant speculation.

                "We are very, very worried about it," said Yvon Godin, the mayor of Bertrand, a village at the northern tip of the peninsula.

                "Residents are anxious, they're asking 'Is it moose meat? Is it deer? Is it contagious?' We need to know, as fast as possible, what is causing this disease."

                On Monday [22 Mar 2021], Green Party Leader David Coon blasted Public Health's handling of the cases on several levels, saying it's "unacceptable that information involving the health of so many people is being concealed."

                Researchers started to gather a year ago to look at this, Coon said. He noted that the case numbers took a jump in 2019, when 11 cases were identified, and again in 2020 when 24 cases were identified.

                Chief Medical Health Officer Dr Jennifer Russell has said that 35 of the 43 cases are on the Acadian Peninsula but has not provided further details about where, specifically, they were identified.

                Dr Jennifer Russell, the province's chief medical officer of health, has said that 35 of the cases are on the Acadian Peninsula, which encompasses about 14 towns and villages. 8 suspected cases are in the Moncton area.

                The provincial Public Health department has not responded to requests for information about where, specifically, in the northeast or the Moncton area the cases have been identified.

                And on Monday [22 Mar 2021], the senior scientist heading up the federal arm of the investigation said he could not provide specific information either.

                "That is very sensitive information, especially in a very small jurisdiction, population-wise, such as New Brunswick," Michael Coulthart said in an interview. "I can tell you that it is available to us but we cannot share it further."

                Coulthart is the director of the federal Creutzfeldt-Jakob Disease Surveillance System, which is providing support to New Brunswick's own investigation of the cluster. He said he wanted to assure anxious New Brunswickers that experts across the country are working to get to the root cause.

                "We're undertaking this investigation with all possible vigour and consulting with a wide range of experts, and all of the kinds of expertise that we need are available in Canada.

                What is it?
                An unknown neurological disease with similarities to Creutzfeldt-Jakob disease, a rare and fatal brain disease

                When was it discovered?
                A single case was diagnosed in 2015. 3 years later, in 2019, 11 additional cases were discovered, with 24 more cases discovered in 2020, and another 6 in 2021. 5 people have died.

                When was it made public?
                A [5 Mar 2021] internal memo from Public Health to healthcare professionals was obtained by Radio-Canada and reported by Radio-Canada and CBC News on Wednesday [17 Mar 2021].

                Where are the cases?
                The disease has so far only been identified in New Brunswick. It appears to be concentrated in the Acadian Peninsula in northeast New Brunswick and the Moncton region in the southeast.

                How many cases are there?
                43 cases have been identified. Of those, 35 are in the Acadian Peninsula and 8 are in the Moncton region.

                Who has been affected?
                The disease affects all age groups and affects males and females equally, according to the Public Health memo. About half of the affected individuals are between 50 and 69 years of age.

                What are the symptoms?
                Symptoms include changes in behaviour, sleep disturbances, unexplained pain, visual hallucinations, coordination problems, and severe muscle and brain atrophy.

                Is it contagious?
                Because the cause has not been determined, it is not yet known whether the disease is contagious.

                What are the possible causes being researched?
                - Despite many similarities, tests for Creutzfeldt-Jakob disease have so far ruled out known prion diseases.
                - Scientists are currently looking into the possibility that this is a new variant of a prion disease -- or a new disease entirely.
                - Neurologists and scientists suspect the cause might be exposure to an as-yet-undetermined environmental toxin.

                Who's researching it?
                - The disease is the subject of investigation by an all-Canadian team of neurologists, epidemiologists, scientists, researchers, and other experts.
                - In New Brunswick, Moncton neurologist Dr Alier Marrero is leading the research. In Ottawa, senior scientist and Creutzfeldt-Jakob Disease Surveillance System director Michael Coulthart is leading the research.

                [Byline: Marie Sutherland]

                --
                Communicated by:
                ProMED
                <promed@promedmail.org>

                ******
                [2]
                Date: Thu 18 Mar 2021
                Source: CBC (Canadian Broadcasting Corporation) News [abridged, edited]
                https://www.cbc.ca/news/canada/new-b...alth-1.5953478


                Public Health is closely monitoring a cluster of more than 40 New Brunswick patients with symptoms similar to those of Creutzfeldt-Jakob disease, a rare and fatal brain disease.

                In an internal memo obtained by Radio-Canada, sent on [5 Mar 2021] by the office of the chief medical officer of health to the New Brunswick Medical Society and to associations of doctors and nurses, the department notes the existence of a cluster of 42 cases of a progressive neurological syndrome of unknown origin.

                A 1st case was diagnosed in 2015, according to the memo. 3 years later, in 2019, 11 additional cases were discovered, with 24 more cases discovered in 2020 and another six cases in 2021. Five people have died.

                The disease affects all age groups and appears to be concentrated in the Acadian Peninsula in northeast New Brunswick and the Moncton region in the southeast.

                "We are collaborating with different national groups and experts; however, no clear cause has been identified at this time," the memo states.

                According to preliminary data from a research group on the subject, headed by neurologist Alier Marrero of Moncton's Dr Georges-L. Dumont University Hospital Centre, the disease is not genetic and could be contracted from water, food, or air.

                No other cases have been reported in Canada. "For now it has only been found here," Marrero said.

                Moncton neurologist Dr Alier Marrero, says it's too early to assume the current cases are of a prion disease, an ultra-rare disease for which there is no effective treatment.

                The symptoms of the cases detected since 2015 are similar to those of prion diseases, which include Creutzfeldt-Jakob disease and some of its variants, including mad cow disease, or bovine spongiform encephalopathy, or BSE.

                However, despite many similarities, tests for Creutzfeldt-Jakob disease have so far ruled out known prion diseases, the Public Health memo states. Scientists are currently looking into the possibility that this is a new variant of a prion disease -- or a new disease entirely.

                "These are patients who have clinical features that correspond to prion diseases, of which Creutzfeldt-Jakob disease is one," but show no evidence of having Creutzfeldt-Jakob disease or any other form of prion disease, Marrero said in an interview.

                The identified cases were all reported to the Canadian Creutzfeldt-Jakob Disease Surveillance System. Public Health said the location of the cases -- in the northeast and Moncton region -- reflects where the patients lived at the time they were referred to the system, not before that.

                Marrero cautioned against rushing to assume the current cases are of a prion disease, an ultra-rare disease for which there is no effective treatment.

                "Before coming out with a definition of a new condition, you need to have a lot of information to be sure that you are not diagnosing something else," such as a disease that is treatable, he said.

                Symptoms progress over 18 to 36 months
                Chief Medical Officer of Health Dr Jennifer Russell said the [5 Mar 2021] memo was intended to alert physicians to this diagnostic possibility when a patient presents certain symptoms.

                In an email, New Brunswick Medical Society spokesperson Eric Lewis confirmed the society received the memo and distributed it to physicians on [9 Mar 2021].

                Symptoms health professionals will watch out for include changes in behaviour, sleep disturbances, unexplained pain, visual hallucinations, coordination problems, and severe muscle and brain atrophy. Symptoms progress over a period of 18 to 36 months, according to Marrero.

                Russell said she is monitoring the situation closely, and that further research is needed to understand the "common links" that could be causing the disease.

                "At this point, we have more questions than answers," she said.

                [With files from Nicolas Steinbach/Radio-Canada]

                --
                Communicated by:
                ProMED
                <promed@promedmail.org>

                [As of 28 Feb 2021, since January 1998, 36 cases of CJD in New Brunswick have been reported to the Canadian CJD surveillance system (https://www.canada.ca/en/public-heal...ce-system.html), the number of new cases reported in March 2021 appears to be much higher. The report also mentions that the disease symptoms are similar to CJD, but diagnostic tests have ruled out known prion diseases.

                The latest report also highlights that there may be a possible common exposure to an as-yet-unidentified toxin. Other differential diagnoses to be considered include metabolic disorders, vascular dementia, infections (encephalitis), and immune-mediated diseases. However, the timeline and clustering of cases are peculiar and indicative of a likely common source.

                Further information in this regard from public health personnel and scientists will be helpful to understand the underlying cause. - Mod.UBA
                Last edited by sharon sanders; March 23, 2021, 07:14 PM. Reason: format

                Comment


                • #10
                  This is Canada's site for CJD surveillance:

                  Creutzfeldt-Jakob disease surveillance system report - Canada.ca

                  Notably, there have been 260 total referrals for CJD testing in all of Canada in 2019 and 2020, of which 125 were confirmed to have some form of prion disease. That's about half, roughly the same rate as in previous years. That does not suggest that something else was getting into these numbers.

                  Unless these New Brunswick cases were not in the above reports at all (which is a possibility as NB only reports 36 cases total since 1998), this isn't what I would have expected for a new cause.

                  Comment


                  • #11
                    Researcher says brain disorder in N.B. may be linked to environmental exposure - New Brunswick | Globalnews.ca

                    A Public Health Agency of Canada researcher investigating a mysterious neurological syndrome in New Brunswick says a potential cause may be some kind of environmental exposure.

                    Michael Coulthart is the head of the Canadian Creutzfeldt-Jakob Disease Surveillance System. He said he?s ruling out a prion disease such as Creutzfeldt-Jakob disease (CJD), but notes that many neurological disorders have features that overlap.

                    ?What we can say with confidence is if we assume that the cluster has a single cause, that cause is not prion disease,? he said in an interview earlier this week. ?It has been ruled out in enough people that we are no longer considering this to be a top candidate.?

                    Comment


                    • #12
                      A four minute interview with the doctor leading the investigation:

                      Neurologist explains mysterious brain disease emerging in New Brunswick | Watch News Videos Online (globalnews.ca)

                      An environmental toxin seems to be the leading hypothesis, and he hinted that he thinks it may be natural as opposed to man-made.

                      Comment


                      • Emily
                        Emily commented
                        Editing a comment
                        Shiloh mentions a natural toxin in post #2.

                      • alert
                        alert commented
                        Editing a comment
                        Possible, but the question would then become why only in this location and why only now? The causes for that toxin appear to be fairly worldwide.

                        I'm almost assuming acute mercury poisoning has been ruled out, as it's such an obvious explanation and would have been detected by now.

                      • Emily
                        Emily commented
                        Editing a comment
                        Mercury poisoning lists hair loss as a symptom and they are getting that.

                        https://www.medscape.com/viewarticle/948101
                        "Diagnosing the disease remains a challenge, as initial symptoms have been largely nonspecific. These include behavioral changes, sleep disturbances, unexplained pain, visual hallucinations, coordination problems, unexplained hair loss, involuntary muscle twitching, formication (a sensation that feels like small insects crawling under the skin), ataxia, and brain atrophy.

                        "What we do know is that once the patients are exposed to this and the symptoms begin, they continue in a predictable manner," he said. "So we can now characterize the symptoms, and we know what they look like and what to expect.

                        "The progression typically is 18 to 36 months, but it could be variable as we don't have enough data yet to predict individually for each patient," Marrero added. "They can also be adults of any age; we've seen both very young patients and elderly patients."'

                    • #13
                      I saw some disturbing Facebook comments to a CBC article on this topic. This article supports the possibility that cases are under reported.

                      https://globalnews.ca/news/7715797/n...brain-disease/
                      New Brunswick man searches for answers as father slowly deteriorates due to mysterious disease
                      By Aya Al-Hakim Global News
                      Posted March 24, 2021 3:02 pm
                      Updated March 27, 2021 4:44 pm


                      A New Brunswick son is sharing his story about his family?s health struggles in hopes of finding answers and signaling others who may have had similar experiences.

                      When Roger Ellis was first admitted to hospital in 2019 and had a seizure, he was misdiagnosed with epilepsy and given treatment.

                      The Bathurst, N.B., man has been going downhill health-wise ever since.

                      That?s why for the past two years, his son Steve Ellis has been trying to find answers to what has been causing his 63-year-old father to deteriorate mentally and physically.

                      ...
                      ?When I read (an article) about the memo coming out? instantly I was like, ?This is my dad,'? said Steve.

                      He says he then reached out to New Brunswick?s public health multiple times by phone and email, but did not get a response.

                      Global News has also tried reaching out to New Brunswick public health about their lack of response to Steve, but there was no immediate comment....

                      _____________________________________________

                      Ask Congress to Investigate COVID Origins and Government Response to Pandemic H.R. 834

                      i love myself. the quietest. simplest. most powerful. revolution ever. ---- nayyirah waheed

                      (My posts are not intended as advice or professional assessments of any kind.)
                      Never forget Excalibur.

                      Comment


                      • #14
                        bump this

                        Comment


                        • #15
                          Unexplained Brain Disease That Causes Teeth Chattering And Hallucinations Baffles Doctors - UNILAD

                          Unexplained Brain Disease That Causes Teeth Chattering And Hallucinations Baffles Doctors

                          BY : EMILY BROWN ON : 02 APR 2021 14:06

                          DrOONeil (CC-BY-SA-3.0)/Shutterstock

                          Doctors in Canada are attempting to get to the bottom of a mysterious brain disease that causes teeth chattering, memory loss and hallucinations.

                          Canadian public health officials have said at least 43 people in New Brunswick, Canada, have developed the suspected neurological disease, five of which have died, with no known cause.

                          Symptoms of the illness are similar to Creutzfeldt-Jakob disease (CJD), a rare, fatal brain disease caused by malformed proteins known as prions, however patient screening has produced no confirmed cases of CJD.

                          As politicians in the area demand answers and locals learned about the investigation following a leaked memo last week, a team of researchers are attempting to determine if the illness is a previously unknown neurological syndrome, or a series of unrelated but previously known ailments.

                          Michael Coulthart, head of Canada?s CJD surveillance network, told The Guardian: ?We have not seen over the last 20-plus years a cluster of diagnosis-resistant neurological disease like this one.?

                          Dr Alier Marrero, the neurologist leading New Brunswick?s investigation, said patients initially experienced unexplained pains, spasms and behavioural changes before going on to develop more concerning symptoms over the following 18 to 36 months, including cognitive decline, muscle wasting, drooling, teeth chattering and, in some cases, frightening hallucinations such as the feeling of insects crawling on their skin.

                          [snip]

                          Valerie Sim, a researcher of neurodegenerative diseases at the University of Alberta, stressed that there ?just isn?t enough information yet?, and noted that certain cancers, dementia or misdiagnoses could explain the range of symptoms.

                          Comment

                          Working...
                          X