As toll rises due to mysterious New Brunswick brain disease, public health promises ‘regular updates’
The death toll from a mysterious brain disease found only in New Brunswick has risen to six from five previously reported, according to the Moncton neurologist who led the province’s investigation into the matter.
In an interview with CBC News, Dr Alier Marrero also said there are now 44 cases in total, up from 43 originally reported in March.
But neither Marrero nor the province’s public health officials will confirm when and where this sixth person died, nor where and when the 44th case was reported.
In an email on Tuesday, Public Health confirmed that “since the first identified case, there have been 43 possible additional cases, for a total of 44 identified cases in the cluster, and there have been six deaths”. But he did not disclose more details.
Public Health also did not share the ages of patients, although it said the disease affects “all ages,” and the agency did not hold public briefings or updates. up to date since cluster news went public three weeks ago.
The disease has symptoms similar to those of Creutzfeldt-Jakob disease, a rare and fatal brain disease, according to an internal Public Health memo obtained by Radio-Canada dated March 5 and sent to health professionals.
However, screening tests for Creutzfeldt-Jakob disease on patients have so far ruled out known prion diseases, and scientists are investigating the possibility that this is an entirely new disease, possibly caused by some kind of environmental toxin.
In addition to noting that most of the cases are concentrated in the Acadian Peninsula region in northeastern New Brunswick and in the Moncton region in the southeast, Public Health did not specify precisely where the cases have been identified.
The lack of public information about the cluster has been a source of concern for many since the disease hit the headlines in mid-March.
“The residents are anxious, they ask, ‘Is this moose meat? Is it deer? Is it contagious? », Declared Yvon Godin, mayor of the village of Bertrand in the north of the Acadian Peninsula and president of the Forum des maires de la Péninsule acadienne in a previous interview.
“We need to find out, as quickly as possible, what is causing this disease.”
Public Health Promises Website
On Tuesday, Public Health spokesperson Bruce Macfarlane said the office understands there is “confusion and concern in the community,” particularly in the Acadian Peninsula and Moncton areas.
So far, he said, it is not known whether the geographic area is linked to the neurological disease.
“Our investigation found no evidence to suggest that residents of these areas are at greater risk than those living elsewhere in the province,” Macfarlane said.
He said public health is “bound to remain transparent” as the investigation progresses, and noted that “regular updates will be provided” via a web page being created.
The promised updates will be welcome for residents in difficulty, but public health continues to be criticized for what has been seen as a lack of transparency.
Steve Ellis, who said his father had exhibited “all symptoms” of the mysterious illness described by public health for about two years now, is shocked the department did not release the information sooner.
The leaked public health memo said the first case was in 2015. There were 11 more cases in 2019, 24 more cases in 2020 and seven more in 2021.
In 2020, the cases were recognized as a cluster.
The memo was leaked on March 17 of this year and public health confirmed the existence of the cluster the next day, when asked about it at a press conference on COVID-19.
“Why haven’t we been told about this before now?” Ellis said. “Why has the government not talked about it on its own, without having to have it disclosed by the media?”
Onset of symptoms such as flipping a switch
Ellis paused to collect his emotions when asked what kind of father his father, Roger Ellis, was before he fell ill.
“He was awesome,” he said. “He was a good father, a very hard worker – he worked at the Brunswick mines in Bathurst at a young age and brought home the bacon. He was understanding, he never gave up parenting, he always tried his best. – and he was that person until he got sick.
“That’s how fast the switch flipped.”
Ellis, who now lives in Nova Scotia, vividly remembers the day that happened.
Two years ago in June, on his 40th wedding anniversary, Roger Ellis collapsed and had a seizure.
Things quickly escalated from there.
Within weeks, he was having delusions and hallucinations, behaving aggressively, and losing weight rapidly. In three months, he had lost 60 pounds. He couldn’t eat, couldn’t lift his head, and could barely walk.
“We were called to the hospital to talk about the end of life because they really thought he was dying,” Ellis said. “We were preparing for his death without knowing what he was dying of.”
“ The lack of transparency was really upsetting ”
Roger was put on a series of medications and rallied around a bit, but continued to experience debilitating symptoms that baffled doctors and the Ellis family.
In other words, until a few weeks ago.
When Ellis heard the news that public health was alerting doctors in the province to a cluster of 43 cases of a mysterious neurological disease, it drew attention.
“My dad had each of the symptoms” that they described, Ellis said.
He immediately contacted Marrero and an appointment was made for a consultation at the Moncton neurologist’s clinic.
Marrero has now taken his father as a patient and will perform a series of toxicological, serological and other tests to determine if he has the mysterious illness.
It’s the closest family response in two years, Ellis said.
After contacting Public Health several times for information and asking why New Brunswickers weren’t told about the disease until this year, Ellis said he finally received a phone call last week from ‘a senior advisor from the Ministry of Health.
“I was told there will be more updates as updates become available,” Ellis said. “And I hope they stick with it, because the lack of transparency has been so upsetting.”
He said: “It took me several media outlets for public health to call me back. And it shouldn’t be.”
Ellis has opened a private Facebook page, titled Mystery Neurological Disease NB Support Group, for those who suspect that they or a loved one has the disease.
“Our mission in sharing our story is to keep moving forward, and I hope that will bring answers to people,” he said. “I know it will take a while, but it’s the most hope we’ve had since dad got sick.”
New Brunswick’s Mysterious Disease: What We Know So Far
What is that?
Unknown neurological disease with similarities to Creutzfeldt-Jakob disease, a rare and fatal brain disease or prion disease.
What is prion disease?
Prion disease is a rare disease that involves a misfolded protein in the brain. The abnormal folding of prion proteins causes a chain reaction that destroys neurons and creates holes in the brain.
When was it discovered?
The first incident occurred retroactively in 2015, when the possible existence of a disease cluster was first recognized by the Public Health Agency of Canada’s CJD surveillance system in 2020. In 2019, 11 more cases were identified, including 24 more in 2020 and seven so far in 2021.
When was it made public?
An internal March 5 memo from Public Health to health professionals was obtained by Radio-Canada and reported by Radio-Canada and CBC News on March 17.
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 northeastern New Brunswick and in the Moncton area in the southeast.
How many cases are there?
Forty-four cases have been identified. Of these, Public Health said 35 were in the Acadian Peninsula and eight in the Moncton area. The location of the 44th case has not been revealed.
How many patients have died?
Six people have died from the mysterious disease, according to neurologist Dr Alier Marrero. All six are included in all 44 cases to date.
Who was affected?
The disease affects all age groups and affects both men and women equally, according to the public health memo. About half of those affected are between 50 and 69 years old.
What are the symptoms?
Symptoms include changes in behavior, trouble sleeping, unexplained pain, visual hallucinations, problems with coordination, and severe muscle and brain atrophy.
Is it contagious?
As the cause has not been determined, it is not yet known whether the disease is contagious.
What are the possible causes sought?
Despite many similarities, tests for Creutzfeldt-Jakob disease have so far ruled out known prion diseases. Scientists are currently investigating the possibility that this is a new variant of a prion disease – or a new disease entirely. Neurologists and scientists suspect the cause could be exposure to an as yet undetermined environmental toxin.
Who is doing the research?
The disease is being investigated by an all-Canadian team of neurologists, epidemiologists, scientists, researchers and other experts. Moncton neurologist Dr. Alier Marrero is leading the research in New Brunswick. In Ottawa, Michael Coulthart, senior scientist and director of the Creutzfeldt-Jakob disease surveillance system, is leading the research.