N.B. investigation into mystery brain illness to begin within months, says Susan Holt
Patients and Moncton neurologist hopeful premier will see her election promise through
Whether the illness is new or not has been a long-standing debate between Dr. Alier Marrero and New Brunswick's Public Health department.
Holt said Prime Minister Justin Trudeau has confirmed the $5 million previously offered to the province to study the neurodegenerative illness, which causes symptoms ranging from painful muscle spasms to memory loss and behavioural changes, is "still on the table," along with the support of the Public Health Agency of Canada.
"It's hard to predict how long will it take us to find out what's making people sick, but the time it takes to get started is something we can control," she said in an interview.
"There's certainly urgency because people are scared and for good reason, right? We can barely diagnose this disease, there isn't treatment for it, and people don't know what's causing it, so they don't know how to change their own behaviours to avoid it."
The Blaine Higgs government launched an investigation in early 2021 into an original cluster of 48 patients, aged 18 to 85, primarily on the Acadian Peninsula and in the Moncton region, consulting experts from both levels of government.
But within three months the province created its own oversight committee, which included six neurologists, a representative from Public Health and someone from each of the two health authorities, to review medical records, analyze questionnaires about where patients had lived and worked, what they had eaten, and examine research, among other things.
By February 2022, the committee concluded there was no mystery neurological syndrome and found "potential alternative diagnoses" for most of the patients, including Alzheimer's disease, Lewy body dementia, and post-concussion syndrome.
In October 2023, federal microbiologist Michael Coulthart, who is the head of Canada's Creutzfeldt-Jakob disease surveillance system and was part of the initial investigation, said in an internal email obtained by CBC News that he was "essentially cut off" from working on the file for reasons he could "only discern to be political," but he believes there is "something real going on" in New Brunswick.
Election promise
On Aug. 30, Holt, then Opposition leader, said New Brunswickers suffering from unexplained symptoms and the doctors trying to help them had "been ignored" by the Higgs government "for far too long."
"New Brunswickers deserve answers," she said in a statement at the time.
Her new Liberal government has released mandate letters she wrote to each cabinet minister, outlining their key priorities and responsibilities. Health Minister Dr. John Dornan's long list of commitments includes "a scientific review into the mystery brain disease." No timeline is indicated.
Holt could not immediately say how long it will take to get the money from Ottawa. But now that the federal commitment is secured, she can direct Public Health New Brunswick to begin to plan the study, she said.
"We need to get the right team together to look through the data and the environments and to run a complete and thorough scientific investigation until we can answer the question with some confidence and reliability that this is what's making New Brunswickers sick."
People can expect to see progress as early as January, Holt said.
The premier said she doesn't know why the former government declined federal assistance but did say she thinks it "maybe was the wrong [decision] to make and absolutely needs to be revisited," particularly now that "more and more" cases have come forward, including ones in other provinces.
Growth unprecedented, neurologist claims
Marrero, who originally identified what he believes to be a new disease to health officials, said he has now notified Public Health of 366 patients from New Brunswick and six other provinces, including Nova Scotia, P.E.I., Newfoundland, Ontario, Quebec and Alberta, through a standard one-page form.
Of those patients, 120 are under age 45, said Marrero.
Forty-two people have died, he said.
An additional 101 cases are under investigation, and he believes there are "hundreds more."
Moncton
neurologist Dr. Alier Marrero says he feels the 'distress and the sense
of urgency' of his patients, who now number in the hundreds. (Virginia Smart/CBC)
Department of Health spokesperson Sean Hatchard did not immediately respond to a request to verify Marrero's numbers, but did confirm Marrero has submitted "initial notification forms" for people whose primary residence is outside New Brunswick.
Under the Public Health Act, medical professionals must report notifiable diseases, including certain "unusual illnesses" to the department by filling out a one-page form.
"In addition, to be able to better assess this particular situation, the department created an enhanced surveillance form to collect additional information on each submitted notification," said Hatchard.
Public Health has received "only 29 completed notifications" from Marrero since May 2023, he said.
Marrero contends the second form, created last year, requires "extensive" information, such as all the doctors a patient has seen and when, all diagnostic test results, such as CT and MRI reports, and all biomonitoring, such as blood or urine tests related to pesticide, herbicide or heavy metals exposure.
The forms take "an immense amount of time," he said.
Patients and families hopeful
New Brunswick patients and their families are hopeful Holt will "do the right thing" and not "succumb to any kind of pressure not to — if there would be any," said patient representative Stacie Quigley Cormier of Dalhousie Junction.
"Politics has no business in medicine," said Quigley Cormier, whose stepdaughter Gabrielle Cormier is one of the youngest patients seeking answers to what's causing her mind and body to deteriorate.
The 23-year-old, who hoped to become a pathologist, had to drop out of university in 2020 because of her symptoms. She suffers from extreme fatigue, struggles with concentration and memory, has lost some peripheral vision, depends on a cane or wheelchair and requires home support.
Gabrielle
Cormier felt her health take a turn for the worse during her first term
at university in September 2019. By mid-April 2021, she was included in
the original cluster of 48 patients. (Submitted by Stacie Quigley Cormier)
Last month, Quigley Cormier sent a letter signed by 48 patients and family members to Dr. Yves Léger, the acting chief medical officer of health, saying they do not have confidence in his leadership. She cited "inaction and lack of urgency" in determining the root causes and interim treatments.
Léger has only served as the province's top doctor since last December, when Dr. Jennifer Russell resigned. He was previously the acting deputy chief.
The letter, copied to Holt, Theresa Tam, Canada's chief public health officer, and federal Health Minister Mark Holland, describes the provincial investigation as an "abject failure" and requested that the Public Health Agency of Canada take over as the scientific lead.
Gabrielle
Cormier and stepmother Stacie Quigley Cormier, pictured at a news
conference in March 2023, hope to see a patient advocate at the table
when the investigation is launched. (Submitted by Stacie Quigley Cormier)
It also expresses support for Marrero and alleges his concerns and requests for help have largely been "sidelined," based on internal correspondence obtained through a right to information request.
While it's still too soon to say what that team will look like, the initial investigation in 2021 involved federal and provincial experts in food safety, environmental health, and infections that travel between animals and humans, exploring issues such as heavy metals and the neurotoxin BMAA, which is produced by blue-green algae.
Marrero had warned that some patients' blood work showed elevated levels for compounds found in herbicides, such as glyphosate, and said more testing should be done to rule out environmental toxins, including BMAA.
If the environment is the cause, that means exposure, illness and death can be prevented, stressed Quigley Cormier. Scientists must be given the opportunity to "rule it in or rule it out."
The focus needs to return to patients, she said, adding she hopes a patient advocate and Marrero will be included in the investigative process.
Holt confident in Public Health team
Holt said she can appreciate the frustration and cynicism of New Brunswick patients about possible political interference at Public Health but contends the issue requires "all hands on deck" — both provincial and federal.
Some
patients and their families have said they have no confidence in Dr.
Yves Léger, acting chief medical officer of health, to lead the
investigation and want the Public Health Agency of Canada to take over. (Submitted by Dr. Yves Léger)
Asked whether she stands by Léger, Holt said she trusts the civil service and is confident the acting chief medical officer of health and his team will follow the directive to "tackle this and to put urgency and resources behind it to get New Brunswickers the answers that they need."
In an emailed statement, Léger did not respond directly to the criticism from Quigley Cormier.
"At this time, we look forward to working with the new government and bringing them up to speed on this important file," he said.
The Office of the Chief Medical Officer of Health has not formally received Quigley Cormier's letter, according to the Department of Health spokesperson.
Public Health would welcome support of federal agency
Once Public Health receives all the completed notifications from Marrero, the epidemiology and surveillance branch "will initiate an analysis plan, which was developed with the support of [Public Health Agency of Canada]" and determine next steps, said Hatchard in an emailed statement.
He said Public Health "would certainly welcome the support" of the federal agency in reviewing the findings of the analysis and "providing them with any advice or suggestion on its interpretation, or thoughts on further work that could be considered."
The agency is available to support provinces and territories upon their request, said spokesperson Anna Maddison, but provinces and territories would take the lead.
She said no requests have been received yet and no other provinces or territories have contacted the agency regarding similar cases of illness.
David Amos
"Marrero, who originally identified what he believes to be a new disease to health officials, said he has now notified Public Health of 366 patients from New Brunswick and six other provinces, including Nova Scotia, P.E.I., Newfoundland, Ontario, Quebec and Alberta, through a standard one-page form.
Of those patients, 120 are under age 45, said Marrero.
Forty-two people have died, he said.
An additional 101 cases are under investigation, and he believes there are "hundreds more."
WOW
William Conway
Reply to David Amos
Marrero is chasing his "legacy" and has lost sight of his objectivity.
RD Atkinson
Reply to David Amos
Requires investigation to be sure. But remember... some people believe the earth is flat.
David Amos
Reply to RD Atkinson
I am not one of them
David Amos
Reply to William Conway
So you say
William Conway
Reply to RD Atkinson
Should we still be spending money on trying to affirm or refute that?
RD Atkinson
Reply to David Amos
I'm glad to here it. But I wonder how his data was collected and whether the collection method (people coming to him) introduces a type of bias. No matter, investigation is warranted, I am just not certain of the outcome.
RD Atkinson
Reply to RD Atkinson
sorry... to hear it, not here it. What good is editing after the post I ask you?
RD Atkinson
Reply to William Conway
I would say no... you are welcome to your opinion however.
William Conway
Reply to RD Atkinson
We had an investigation and conclusions in 2022. Marrero and his patients were not happy that they didn't win the prize of "Mystery Illness of the Decade", and want a do over.
David Amos
"Politics has no business in medicine," said Quigley Cormier, whose stepdaughter Gabrielle Cormier is one of the youngest patients seeking answers to what's causing her mind and body to deteriorate.
I Wholeheartedly Agree
RD Atkinson
Reply to David Amos
Of course that is utopian. How much to spend, what to spend it on, whether to allow things like MAID, issues of remuneration in a socialized medicine system, levels of access to dangerous medication... a host of issues that have to be decided on by the governing authorities, which more than implies politics.
Larry McCarthy
Reply to RD Atkinson
Aside from those things, his statement has merit.
RD Atkinson
Reply to Larry McCarthy
The sentiment has merit, but practically speaking, it is utopian.
Larry McCarthy
Reply to RD Atkinson
Under all circumstances?
David Amos
Reply to RD Atkinson
In politicking the milk of human kindness runs thin if at all
William Conway
Reply to David Amos
If medicine involves public funding, then by its very definition, politics are involved. If you don't understand that...
David Amos
Reply to William Conway
What is it you think I don't understand?
RD Atkinson
Reply to David Amos
I would say its up and down... lately down.
Denis Reagan
Reply to David Amos
Trump and his potege Mr. Axe the Facts are fine examples of that.
RD Atkinson
Reply to Larry McCarthy
The individual practitioner has some discretion. It is difficult for governing authorities to legislate feeling however. They have to decide on parameters at least. Like it or not, some person in provincial capitals all over Canada is charged with deciding what drugs and treatments get authorized, and by extension, potentially who lives or not.
Alison Jackson
Reply to William Conway
Buddy buddy....no. Snowplows involve public funding as does highway signs...should politicians get involved with those things?
Larry McCarthy
Reply to Alison Jackson
And, recently that discretion is lessening.
RD Atkinson
Reply to Larry McCarthy
True... not a good trend.
William Conway
Reply to Alison Jackson
You obviously are not from the Maritimes, if you don't understand how public works contracts are assigned!
Content Deactivated
Any Amish have this disease?
Denis Reagan
Content Deactivated
Reply to Doug Vanstone
Amish Amash, all these dudes look for is cash.
David Amos
Content Deactivated
Is that your idea of witty?
John Collins
Content Deactivated
He gets an E for Effort
Denis Reagan
Content Deactivated
Not absolutely brilliant? I'm a sit-down comic eh!
"Politics has no business in medicine," said Quigley Cormier, whose stepdaughter Gabrielle Cormier is one of the youngest patients seeking answers to what's causing her mind and body to deteriorate.
Best way around that, is for the people involved to fund this investigation themselves. That way they can be assured that the answers they get will be satisfactory and apolitical.
You get what you pay for.
RD Atkinson
Reply to William Conway
Don't you think that is one of the fundamental reasons for government? Defense just doesn't mean guns, boats and planes. It surely must include things like food safety and response to emerging illnesses.
Loran Hayden
Reply to William Conway
No, it's not. Individual folks do not have access to the resources the government does.
William Conway
Reply to RD Atkinson
As COVID 19 so aptly demonstrated, the public is not even aligned on a scientific response to a real pandemic. This phantom illness is multiple oders of magnitude below that.
Denis Reagan
Reply to Loran Hayden
He might have been referring to the Doug Ford Political medicine route. All to be private. Let those who can afford it see the best doctors. If you're broke, take an aspirin
William Conway
Reply to Loran Hayden
Then they must be satisfied with the original level of investigation.
Denis Reagan
Reply to William Conway
Pandemic? Trump and "all" his people don't go beyond one syllable in that field.
William Conway
Reply to Denis Reagan
How's your system working for yah?
RD Atkinson
Reply to William Conway
Perhaps, even likely, but how can we be 100% sure without monitoring at a minimum.
William Conway
Reply to RD Atkinson
We are and we did. Case closed.
Denis Reagan
Reply to William Conway
Couldn't be better. Tell me how they have failed you?
RD Atkinson
Reply to William Conway
No... without knowing the cause, or if there is no cause, the case is not closed.
Harry Gothem
Reply to William Conway
Governments make policies... and if your juridiction involves healthcare... Then those policies involve healthcare.
And you can pay the best investigators the most money in the world... and they would be happy to tell you what you want and take your money.
You do know that if you search Google on why vaccines are bad you will find dozens of websites with proof and none will tell you that the disease that they stop is 100 times worst than the minor side effects.
William Conway
Reply to Denis Reagan
Hasn't failed me in any way, yet this forum is filled those living in fear of their health.
William Conway
Reply to RD Atkinson
Spend your money then. There are far more serious healthcare issues facing vastly more people, that are more worthy of funding than this.
William Conway
Reply to RD Atkinson
80% of the original cases of this mystery disease had a diagnosis. That is a good closure for something as vague as this.
William Conway
Reply to RD Atkinson
People die all the time without us knowing "the cause", because most of the time, it doesn't really matter. Old age is not a " cause".
David Amos
Reply to William Conway
So you say
William Conway
Reply to David Amos
You picked up on that, did you? Perhaps there is hope...
RD Atkinson
Reply to William Conway
True... and perhaps that will be the only conclusion here. But it deserves some analysis, more than this one physicians records seemingly allowed.
RD Atkinson
Reply to William Conway
The thing is... you can't really know that. The old saying about not "hearing the bull et that kills you" has some truth to it. As that pertains to emerging illness, of course you are going to spend some cash on red herrings because you have to find the real issues as quickly as possible, lest you don't hear that bull et.
William Conway
Reply to RD Atkinson
It was looked into. One dissatisfied doc and his merry band of family members want to waste time and money. Let them waste there own, not that of taxpayers.
From: David Amos <david.raymond.amos333@gmail.com>
Date: Mon, Nov 25, 2024 at 12:12 PM
Subject: RE N.B. investigation into mystery brain illness to begin within months
To: <stacieqc.lct@gmail.com>
Co-owners
Marie-Pierre and Eve have been working in the field of mental health as a social worker and psychologist since 2005. They founded the Mind at Peace Center in 2018 using an interdisciplinary approach. At the time, they were looking to work with professionals from different disciplines to meet the multiple needs of their clients. That being said, the Center aims to offer professional services in one place for people who seek wellness.
Stacie Quigley Cormier, MACP, LCT, CCC
Licensed Counselling Therapist
Stacie Quigley Cormier has over 17 years of experience supporting people with their mental health and emotional health needs. She has a BA in Psychology and a Masters in Counseling Psychology and uses her vast experience in counselling sessions with families, couples and individuals.
Stacie specializes in family dynamics, neurodiversity and the effects of stress and trauma on cognitive processes and the nervous system. Her approach is warm and welcoming and consists of trauma-informed and evidence-based therapeutic approaches such as Gottman Method Couples Therapy (Level 2), Cognitive Behavioral Therapy, Cognitive Processing Therapy and Mindfulness-Based Therapies.
Stacie is trained in SACCADE, an approach specifically developed to support autistic individuals and their families with internal processing, communication and psychosocial goals. She has also taken courses offered by Dr. Temple Grandin, world renowned specialist in autism.
Stacie is currently working toward her certification in Somatic Experiencing (SE): a body-oriented therapeutic model that helps resolve traumatic shock and stress stored within the body, and has success in treating trauma, PTSD and other stress disorders. The SE approach considers the whole body and how it is affected by stress as it was developed as a result of a multidisciplinary study of the effects of stress through disciplines such as psychology, neuroscience, physiology and biology, etiology, indigenous healing practices, and medical biophysics.
She is a member of the College of Counselors Therapists of New Brunswick and has been part of the Mind at Peace Center’s team since it opened in 2018.
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