A whistleblower from the Canadian province of New Brunswick has warned that a progressive neurological disease that has baffled experts for more than two years appears to be affecting increasing numbers of young people and causing rapid cognitive decline in some of those afflicted.
Speaking to the Guardian, an employee of Vitalité Health Network, one of the province’s two health authorities, said suspected cases are on the rise and young adults without previous health triggers are developing a catalog disturbing symptoms, including rapid weight loss, insomnia, hallucinations, difficulty thinking and reduced mobility.
The official number of cases under investigation, 48, remains unchanged since it was first announced in early spring 2021. But several sources indicate that the cluster could now number up to 150 people, with a backlog of cases involving young people still requiring assessment. further.
“I am really concerned about these cases because they seem to be changing so quickly,” the source said. “I’m worried about them and we owe them some sort of explanation.”
At the same time, at least nine cases have been recorded in which two people in close contact – but without genetic links – developed symptoms, suggesting that environmental factors may be involved.
One suspected case involved a man who developed symptoms of dementia and ataxia. His wife, who was taking care of him, suddenly began to lose sleep and suffered from muscle wasting, dementia and hallucinations. Now his condition is worse than hers.
A woman in her 30s has been described as non-verbal, tube-feeds, and drools excessively. Her caregiver, a nursing student in her twenties, has also recently started showing symptoms of neurological decline.
In another case, a young mother quickly lost nearly 60 pounds, developed insomnia, and began to hallucinate. Brain imaging showed advanced signs of atrophy.
The Vitalité employee, who asked not to be named because he was not authorized to speak in public and feared repercussions for speaking, said he decided to come forward amid growing concerns about the speed at which young people have deteriorated.
“It is not a disease of New Brunswick,” said the employee. “We are probably the region that raises the flag because we are mainly in a rural setting and in an area where people might be more exposed to environmental factors. “
But in January, the province of New Brunswick is expected to widely announce that the cluster of cases, first made public last year after a media note was leaked, is the result of misdiagnosis, which mistakenly grouped unrelated diseases together.
The Special Neurodegenerative Disorders Clinic, also known as the Mind Clinic, in the city of Moncton is the clearinghouse for referrals from the region as well as neighboring provinces. The potential cases have generally baffled doctors and withstood a battery of standardized neurological tests used to rule out certain conditions.
Using a case description guideline developed by a team of neurologists and epidemiologists, the clinic decides whether patients deserve further investigation or whether they may have a known disease or illness. Determining who’s in the group is subjective, in large part because the brain is notoriously difficult to study. Certainty is often not achieved until after the patient has died and the brain tissue can be fully tested.
Despite the vivid details surrounding the new cases, the province has worked to allay fears. In October, officials suggested the eight fatal cases were the result of a misdiagnosis, saying that instead of suffering from a common neurological disease, the victims died from known and unrelated conditions.
But experts familiar with the cluster are alarmed, in large part because of the age of the patients. Neurological diseases are rare in young people.
“The fact that we have a younger set of patients here argues very strongly against what appears to be the preferred position of the Government of New Brunswick – that cases in this group are grouped together in error,” said a scientist from Canada’s public health agency, which specializes in neurodegenerative diseases, but was not licensed to speak.
In October, the province also said an epidemiological report suggested there was no significant evidence of a known food, behavior or environmental exposure that could explain the disease.
Tim Beatty’s father, Laurie, a retired hardware employee, died in 2019 after the onset of the mental confusion around Christmas marked the start of his rapid deterioration.
Beatty says the family were “stunned” when they learned that her father was one of eight people a pathologist controversially said had been misdiagnosed and instead died of Alzheimer’s disease.
Beatty and her sister have pleaded for their father’s remains to be tested for neurotoxins, including β-methylamino-L-alanine (BMAA), which some believe may be the culprit of the disease.
In one study, high concentrations of BMAA were found in lobster, an industry that boosts the economies of many New Brunswick coastal communities. The province’s apparent resistance to testing suspected environmental factors has led to speculation among families that efforts to rule out the existence of a cluster could be motivated by political decision-making.
“If a bunch of people wanted to breed conspiracy theorists, then our government did a tremendous job promoting it,” Beatty said. “Are they just trying to create a narrative for the audience that they hope we absorb and move away from?” I just don’t understand it.
Documents obtained through freedom of information requests and seen by the Guardian showed scientists at the country’s public health agency saw BMAA as a possible cause, but needed the province to order testing .
“I don’t know why the province wouldn’t just do the science and watch. They have my father’s remains. We gave them full permission to do toxicology and do what needs to be done, ”Beatty said. “Yet nothing was examined.”
But experts nevertheless warn that the test itself is also more difficult than the public realizes.
While some medical tests can provide quick and accurate results, other types of investigation require a lot more work.
“What people are talking about really amounts to a full research investigation because then we know exactly what we are looking for,” said the federal scientist who was familiar with both the cluster and the testing process. “Right now, we have no way of interpreting the simple data you might get by testing a person’s brain tissue for a particular toxin. For example, how high are the “high” levels of a neurotoxin compared to the rest of the public? And when does this become a cause for concern? “
The scientist said the teams were ready to start the research, but “New Brunswick specifically told us not to go ahead with this work.”
Those familiar with the cluster are bracing for a January report, written by the province’s watchdog committee, which will determine whether the 48 cases are actually suffering from a neurological disease or the result of a misdiagnosis by neurologists.
Amid mounting tensions between specialists and the provincial government, a source close to the Mind Clinic said that postings for several positions at the clinic – a social worker, administrator and neuropsychologist – were recently made temporary, budget would no longer be recurring and the clinic would be converted into an Alzheimer’s and geriatrics clinic. Health Minister Dorothy Shephard told reporters on December 1 that speculation about the clinic closing was false.
“We keep telling patients that the country is behind them and that the tests will be done so that we can understand this. We tell them that we are going to get to the bottom of things to be able to help them, ”said the Vitalité employee. “And so far that has not happened. But they need us.