Whistleblower warns baffling illness affects growing number of young adults in Canadian province
A whistleblower in the Canadian province of New Brunswick has warned that a progressive neurological illness that has baffled experts for more than two years appears to be affecting a growing number of young people and causing swift cognitive decline among some of the afflicted.
Speaking to the Guardian, an employee with Vitalité Health Network, one of the province’s two health authorities, said that suspected cases are growing in number and that young adults with no prior health triggers are developing a catalog of troubling symptoms, including rapid weight loss, insomnia, hallucinations, difficulty thinking and limited mobility.
The official number of cases under investigation, 48, remains unchanged since it was first announced in early spring 2021. But multiple sources say the cluster could now be as many as 150 people, with a backlog of cases involving young people still requiring further assessment.
“I’m truly concerned about these cases because they seem to evolve so fast,” said the source. “I’m worried for them and we owe them some kind of explanation.”
At the same time, at least nine cases have been recorded in which two people in close contact – but without genetic links – have developed symptoms, suggesting that environmental factors may be involved.
One suspected case involved a man who was developing symptoms of dementia and ataxia. His wife, who was his caregiver, suddenly began losing sleep and experiencing muscle wasting, dementia and hallucinations. Now her condition is worse than his.
A woman in her 30s was described as non-verbal, is feeding with a tube and drools excessively. Her caregiver, a nursing student in her 20s, also recently started showing symptoms of neurological decline.
In another case, a young mother quickly lost nearly 60 pounds, developed insomnia and began hallucinating. Brain imaging showed advanced signs of atrophy.
The Vitalité employee, who asked not to be named because they were unauthorized to speak publicly and feared repercussions for speaking out, said they decided to come forward because of growing concerns over the speed with which young people have deteriorated.
“This is not a New Brunswick disease,” said the employee. “We’re probably the area that is raising the flag because we’re mostly rural and in an area where people might have more exposure to environmental factors.”
But in January, the province of New Brunswick is widely expected to announce that the cluster of cases, first made public last year after a memo was leaked to the media, is the result of misdiagnoses, which have mistakenly grouped unrelated illnesses together.
The Special Neurodegenerative Disorder Clinic, also called the Mind Clinic, in the city of Moncton is the clearing house for cases referred from within the region as well as neighbouring provinces. Prospective cases have typically stumped doctors and resisted 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 if the patients warrant further investigation or if they may have a known illness or disease. Determining who becomes part of the cluster is subjective, largely because the brain is notoriously difficult to study. Certainty is often only obtained after the patient dies and the cerebral tissue can be fully tested.
Despite the striking details surrounding the newer cases, the province has worked to tamp down fears. In October, officials suggested that the eight fatal cases were the result of misdiagnosis, arguing that instead of suffering from a shared neurological illness, the victims had died of known and unrelated pathologies.
But experts familiar with the cluster are alarmed, largely because of the age of the patients. Neurological illnesses are rare in young people.
“The fact that we have a younger spectrum of patients here argues very strongly against what appears to be the preferred position of the government of New Brunswick – that the cases in this cluster are being mistakenly lumped together,” said a scientist at the Canada’s public health agency, who specializes in neurodegenerative illnesses but was unauthorized to speak.
In October the province also said an epidemiological report suggested there was no significant evidence of any known food, behaviour or environmental exposure that could explain the illness.
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