For more than two years, dozens of people in the Canadian province of New Brunswick have suffered from a distressing array of neurological symptoms, prompting speculation that they had fallen victim to an unknown degenerative illness.
Provincial authorities are soon expected to release a report examining whether the cases are linked, or simply the result of misdiagnosis and clinical error. But as the public awaits the findings, those enduring the extreme symptoms say they’ve been left to suffer alone.
Victims and their families have described a frightening deterioration of bodies and minds, compounded by an agonizing wait for more information.
Gabrielle Cormier, 20, dreamed of attending medical school. But in 2019, she began experiencing muscle pain, difficulty concentrating and vision problems. Her family initially suspected it was fatigue from sports. Soon, however, she could no longer keep her balance.
Cormier can now walk only with a cane, has trouble speaking and is unable to focus enough to attend university classes. Her dream of becoming a doctor is slipping away.
“It breaks our heart. Young people should be out living and enjoying themselves. Instead they’re dealing with these health issues that we can’t explain,” said Gabrielle’s stepmother, Stacie Quigley Cormier. “Politics is slowing everything down. And what people don’t have is time.”
The broader public first became aware of the illness last March, after a leaked government memo asked doctors to be on the lookout for patients with symptoms similar to Creutzfeldt-Jakob disease. The government called it a “cluster of neurological syndrome of unknown cause”.
At the time, the province was working alongside federal scientists to make sense of the suspected cases. Internal documents obtained by freedom of information requests and seen by the Guardian show that after a battery of diagnostic tests proved inconclusive, the province’s department of environment and public health units began exploring the possibility of environmental causes, including blue-green algae, toxicity in shellfish, chronic wasting disease and even glyphosate, a controversial forestry herbicide.
But cooperation with the federal government ended abruptly in late spring and the province took the lead of the investigation. They created an oversight committee to re-examine suspected cases and determine if errors had been made in the diagnostic process.
Victims families say that after the province took over, the investigation slowed down.
“Everything went black. There was no communication. There was no information, medical appointments weren’t moving as quickly any more … That’s when Gabrielle’s morale really started to go downhill,” said Quigley Cormier. “Our questions can’t be answered and she’s really started to lose hope.”
The government first identified 48 suspected cases last spring, although medical sources say the figure is closer to 150, with many of those afflicted in their 20s and 30s.
But the provincial government increasingly suspects there is no single mystery illness in the region. An October report ruled out any significant links between the victims or evidence of toxins in food sources, and a previous study found that eight people in the cluster died of known illnesses.
That conclusion clashes with recent reports that caregivers in some suspected cases have also developed symptoms, which some experts suggested could indicate an environmental cause.
The province of New Brunswick did not respond to questions about its investigation of the cluster and whether it plans to test for possible environmental contamination.
Officials have not announced when the report will be released and families say they’ve been kept in the dark.
But the province has already started advising those within the “cluster” they are no longer believed to have an unknown illness, even if those people still suffer from debilitating symptoms.
Earlier this month, Johanne Boucher, who was one of the original 48, received a letter from the committee advising her that she was no longer a prospective case.
The letter said she could be suffering from a type of progressive aphasia, a form of Parkinson’s or a variant of corticobasal degeneration. The committee suggested she take tests which the 63-year-old says she has already taken.
“I was shocked,” she said, writing to the Guardian on Facebook Messenger as she lost the ability to speak in late 2021. “I can’t even order a coffee. All I can do is write. After nearly four years, I’ve seen two neurologists … and had countless tests. I don’t know what I have. The disease remains unknown.”
Terriline Porelle, 33, is equally dismayed by how the province has handled her case.
In the summer of 2020, Porelle, felt a sharp pain “like electric shock” in her leg. Porelle, an avid hiker, found that in the following days, the sensation moved throughout her body, reaching her arms and face. Like Gabrielle Cormier, her vision worsened. An optometrist told her the muscles in her eyes acted similarly to those of patients in their 70s and 80s.
After forgetting how to write the letter Q, she saw her family doctor. But tests turned up nothing. A neurologist ruled out other possible conditions and her brain scan was clean.
“I was relieved it wasn’t a tumour or something. But we still didn’t know what it was. I try not to obsess over it,” said Porelle, who has trouble moving around her house. “I have sleepless nights where I wonder how this happened. What’s going on with me?”
Recently, Porelle was referred to a neuropsychologist by the province’s oversight committee. After speaking to the specialist over the phone for four hours, Porelle was told she likely had PTSD – not an unknown illness. She had previously suffered from depression and anxiety, but she says her current symptoms are nothing like that.
“I just laughed. I was like, ‘Are you serious right now?’ I’m still trying to digest that.”
Porelle, who lives in a rural community, says her mental function continues to deteriorate. She finds it hard to complete daily tasks without the help of her partner.
“We’ve been given no resources from the government and no help,” she said. “I don’t know what to do. I try to keep positive, but it’s hard. There are days when I don’t know if I should even bother saving for retirement. Am I even going to live that long?”
