Melissa Hawkes started feeling unwell while visiting a friend’s house in March 2021. All she remembers before passing out is going to the bathroom. When she opened her eyes, she found herself lying on the ground, her friends and fiancée looking at her worriedly.
“They say, ‘Oh no. You had a seizure,’” said Ms. Hawkes, 27, who lived in Moncton, New Brunswick, when the symptoms began. “I had never been to this person’s house before. I had just met her with my fiancée. I was so embarrassed.”
What started as “mild” problems, she says, like intense exhaustion and nausea, turned into a serious illness: She had a second attack in 2023 and developed nerve damage in her wrist and a Necrotizing gingivitis, a painful infection of the gums.
She is one of approximately 400 New Brunswick residents suffering from what the province calls “neurological syndrome of unknown cause,” a mysterious brain illness that appears to primarily affect people living on the Acadian Peninsula and Moncton areas. His fiancée, Sarah Nesbitt, is also affected.
In February 2022, the Ministry of Health under the Progressive Conservatives said a team of six neurologists and other health experts had found no evidence of a cluster of cases.
But patients, who reported symptoms, such as memory problems, balance problems, behavioral changes, muscle spasms and bouts of severe pain, said the province should never have shut down the ‘investigation. In response, the Liberals campaigned on a promise to reopen it, and since winning the October election, New Brunswick’s new government is back on the issue.
From around fifty to more than 400 patients
A lot has changed since 2022, Health Minister John Dornan said in a recent interview, noting that there were fewer than 50 patients who had symptoms at the time. Today, he says, there are more than 400.
The 2022 Ministry of Health report indicated that 46 of the 48 cases were referred to the government by a single neurologist, Dr. Alier Marrero, and that for 41 patients, experts found other possible diagnoses: Alzheimer’s disease. Alzheimer’s, various forms of dementia, post-concussion syndrome and cancer. Ten of the 48 patients died and six underwent autopsy. “These diagnoses included diseases such as Alzheimer’s disease, dementia with Lewy bodies or cancer,” the report said of the autopsy findings.
But John Dornan said with the number of people showing symptoms increasing, the Liberal government wants to look “deeper and broader.”
“We have not yet been able to easily identify a common denominator for a treatment, and that is a real daunting challenge,” explained the minister, whose mandate letter from Premier Susan Holt asks him to to conduct “a scientific examination of the mysterious brain disease.” Alier Marrero, who began investigating the cases in early 2020, gave access to his records to provincial and federal health care teams, including experts from the Public Health Agency of Canada, said the Minister of Health.
Dr. Marrero did not respond to an interview request.
“This is a new phenomenon,” explained Mr. Dornan. Whether we characterize it as a disease, a syndrome, or some other common denominator, our first step is to understand what is happening. (…) We are doing it right now. So (the process) began. He’s more than just started.”
-Federal Health Minister Mark Holland called it a “great collaboration”.
“The Public Health Agency of Canada is deeply committed. We’re working through this process to be able to understand what’s going on and to make sure that we have the data and the evidence to really understand what’s going on, and then how do we go about it,” he said. he declared.
An environmental cause?
Melissa Hawkes said she and some of the other patients have called on the government to test for “environmental toxins” such as the weedkiller glyphosate. In January 2023, Dr. Marrero asked federal and provincial health authorities to examine the link between their symptoms and the herbicide.
Minister Dornan indicated that the investigation would take place one step at a time. “So we’re going to first figure out what the common denominator might be, before we look at the environment, because some of the tests done on patients treated by Dr. Marrero include environmental factors. We will look into all of this.”
Ms Hawkes, who is also one of Alier Marrero’s patients, called the reopening of the investigation a “good first step”.
«[Mais]I’m afraid it will take so long. People died (…) I am terrified, absolutely terrified,” she added.
Meanwhile, his 41-year-old fiancée mentioned that some of the symptoms have started to subside, five years after their onset.
The couple moved to a new town — Canaan Station, New Brunswick — and Ms. Nesbitt changed her lifestyle and diet. She also started playing video games to improve hand-eye coordination. “Some things are still regressing or escalating, but many symptoms have started to improve,” she said.
She still has seizures and tremors, but they are not as severe or frequent. She is also able to stand for more than “a few minutes” and the nervous tingling on one side of her body is not as frequent. “A lot of things have improved. I’m just not getting better yet.”
It took a long time for the government to consider the case closed in 2022.
“They listen,” Sarah Nesbitt said of health officials. All we have to do now is see the action.”
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