New Brunswick Premier Susan Holt wants the Public Health Agency of Canada to help investigate a mysterious brain illness that has touched hundreds of people in her province and appears to be making people sick in neighbouring Nova Scotia.
An oversight committee appointed by Progressive Conservative Blaine Higgs’ former government rejected the idea that the cases are linked. It indicated that most of the patients in the cluster were misdiagnosed. But after meeting with Prime Minister Justin Trudeau Wednesday, New Brunswick’s new Liberal premier said federal government scientists will get involved.
“We need to conduct a thorough investigation into what is making people sick,” Holt said Thursday.
“Because we don’t know right now. Not only do we not know how to pin it down, diagnose and treat this, we don’t know what’s causing it.”
The Public Health Agency of Canada had offered the former Higgs government $5 million to help investigate potential causes of what people are calling an atypical neurodegenerative illness, as well as resources and expertise.
“We would like to take them up on that,” Holt said, noting Trudeau assured her the offer was still on the table.
“We have got to figure out what’s making people sick, and we need to do a full, open scientific investigation into this.”
She doesn’t know why the Higgs’ government turned down the initial offer of federal help.
“I think at the time maybe they thought they could handle it when the numbers were (lower),” Holt said.
“But those case numbers have gone through the roof. And I can’t sit here and tell New Brunswickers, ‘No, sorry, there’s no link. And we don’t know and we don’t care what’s making you sick.’ That’s not what people deserve.”
The inexplicability of it is agony. Not knowing what’s caused it, what’s going to happen next, what the treatment path is
New Brunswick neurologist Dr. Alier Marrero has seen hundreds of patients in recent years who are experiencing inexplicable symptoms of neurological decline. Those included anxieties and difficulty sleeping, as well as more acute symptoms including limb pain and trouble balancing, teeth chattering, violent muscle spasms, vision problems and hallucinations. Many of them were under the age of 45.
“It’s devastating in how it comes on and how it debilitates people,” Holt said. “The inexplicability of it is agony. Not knowing what’s caused it, what’s going to happen next, what the treatment path is. But knowing that it doesn’t seem to be treatable and people around you have died from this is terrifying. So, I think we need to be doing everything we can to shed some light on this and find a way to stop what’s making people sick.”
About 400 people in New Brunswick have reported similar symptoms, Holt said. “That number is probably an underestimation,” she said, noting 40 people with the illness in her province have already died.
Marrero is finding high levels of pesticides in the blood of his patients, leading him to suspect their illness is being caused by something in the environment.
But he still questions whether environmental toxins are causing the illness, or whether its a new form of prion disease related to Creutzfeldt–Jakob disease or chronic wasting disease, seen in deer and moose.
“They should test the food chain, the water, they should test the soil, they should test the patients,” as well as people who live with them who haven’t become ill, Marrero said.
“I’ve been requesting this right from the beginning,” he said. “My position has never changed from day one. I’m calling for this help. I’m calling for this investigation. I’m providing them with all the data and the work I have done.”
If that doesn’t happen, “more people would get sick and more people would die,” Marrero said. “Because I have seen this pattern for almost ten years now and I have seen this growing…. For a long time I’ve been sounding the alarm.”
Marrero’s confident federal government scientists will be able to get to the bottom of the mystery. “I know there’s enough expertise and science and resources in Canada to do that.”
He’s seen dozens of patients from Nova Scotia exhibiting symptoms similar to those cropping up in New Brunswick.
Holt indicated she’d like to see federal government scientists look into what’s happening in Nova Scotia as well.
“I think that that’s a great idea,” she said. “That’s partly Public Health Canada’s role. They might be doing this because we asked for it, but it’s impacting Canadians beyond provincial borders.”
One theory is that glyphosate, a widely used broad-spectrum herbicide applied to kill weeds and other vegetation, is causing the problem. Blue-green algae and other environmental toxins have also been suggested as the cause, Holt said.
“People are looking for answers and they’re ready to jump to the first available answer in the absence of good data and good science,” she said. “That’s why we have to do the work to figure out what it isn’t and to identify what it is.”
Marrero said Thursday he has 467 patients with the undiagnosable illness.
In New Brunswick, people in the Moncton area and the Acadian Peninsula have reported having it.
Some with the illness were keen to hear federal help is on the way.
“It’s a long time coming but I’m excited to get the ball rolling,” said Sarah Nesbitt, who started exhibiting symptoms in 2020.
Nesbitt experienced bowel and bladder problems, numbness in her extremities and confusion. “I had six periods in less than three months, and they were all horrendous. And I was only 36 at the time. You can’t blame this on menopause.”
When she fell ill, Nesbitt was living in Steeves Mountain, N.B. But she’s since moved to Cannan Station, outside Moncton.
“I had to leave,” Nesbitt said. “I was burning myself on my woodstove…. It was like my hand wasn’t getting the signal to stop. I was scared I was going to burn my house down.”
Since moving, Nesbitt said her health has improved.
“I was vomiting every day for six months; that stopped,” she said. “Where I couldn’t walk very far at all or stand on my feet too long, now I’m actually doing things. I just got out of the woods.”
Nesbitt believes exposure to glyphosate was causing her problems.
“I became aware and acknowledged what around me was making me sick and I changed it,” she said.
“Some things that are neurodegenerative will never get better, some things I’ve stabilized, some things I’ve slowed, and some things I’ve healed.”
Tests show, Nesbitt said, that she has a lot of nerve damage in her spine and hips. “I can’t go full tilt like I used to anymore.”
Julie Hardy, who lives outside Amherst, N.S., started losing her balance and falling down in 2017. Her home is a 20-minute drive from the New Brunswick border.
By the time Hardy got in to see Dr. Marrero in 2021, he told her she had to stop working.
“At that point my short-term memory was really bad,” said Hardy.
“I worked in a daycare in the kitchen, and I was having trouble remembering my recipes…. I completely forgot how to divide.”
Now 53, her health continues to deteriorate.
“You can’t treat what you don’t know what you have,” Hardy said.
Dr. Robert Strang, Nova Scotia’s chief medical officer of health, didn’t immediately respond Thursday to questions about how many people are reporting similar symptoms in his province, or whether he wants to see federal public health authorities investigate the possibility that a mysterious brain illness has crossed over into Nova Scotia.
In an email response last month to questions from Independent Nova Scotia MLA Elizabeth Smith-McCrossin, Tara Walsh, Nova Scotia’s senior executive director of public health, wrote that Strang has been in touch with his equivalent in New Brunswick “regarding a reported possible cluster of atypical neurodegenerative disease cases. At this time, Nova Scotia is not investigating this matter.”
Like Nesbitt, Hardy believes glyphosate exposure caused her health problems.
She can’t control her temperature. “When it’s really hot out, I have to stay inside in air conditioning because I can’t regulate. I can’t sweat effectively. Now that it’s cooling down, I can’t keep my heat.”
She’s had trouble digesting food and controlling her blood pressure.
“My left side is weaker than my right side and I have reduced feeling — it’s creeping up almost to my shins now.”
Hardy’s also experienced hallucinations.
“I’ll see things out of the corner of my eye — a lot of us see cats,” she said. “Or they’ll be knocking at the door and nobody’s there.”
As for Marrero, he hopes “this time we get it right, we don’t drag feet again and we don’t behave without logic.
“We need adults in the room and no other interests should be above the life and health of patients.”
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