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“This really was an example of misdiagnosis,” said Dr. Anthony Lang, the study’s senior author and a senior scientist at the University Health Network’s Krembil Research Institute. “Unfortunately, the patients, we believe, have been encouraged to believe that they have a mystery disease that could indeed be fatal.”

Some doctors and patient advocates have expressed skepticism over the study’s results and methodology.

“I am in profound disagreement with the study conclusions and have many questions regarding the methods and the content,” Dr. Alier Marrero, one of the first doctors to sound the alarm on the suspected illness, told the Star over email. “I am sure that our patients, families and communities share the same very serious concerns.”

The mystery brain disease is currently the subject of an investigation by New Brunswick health officials and public health agencies, following years of patient complaints accusing the province of brushing off their concerns. More than 500 suspected cases have been reported to date, Marrero said.

What is the New Brunswick mystery brain disease?

Patients afflicted by what health officials referred to as a “neurological syndrome of unknown cause” have reported a wide range of symptoms from behavioural changes and memory loss to muscle spasms and bursts of intense pain.

For Gabrielle Cormier, the symptoms started in 2018 when she was in grade 12. At first, the New Brunswick native had trouble focusing on her homework and reported flickering dots across her field of vision. But as the months passed, her symptoms evolved into memory, vision and sleep issues; auditory and visual hallucinations; and difficulty walking.

“Some of those symptoms have improved in certain ways, but her health continues to decline,” her stepmom, Stacie Quigley Cormier, told the Star. “She doesn’t know when she’s hungry or when she is full. She’s still having sleep issues. She does still have memory issues … We try to focus on her quality of life.”

The public first learned of the suspected illness in 2021, when it was revealed Public Health New Brunswick was monitoring 48 patients. But the just a year later, concluding the patients did not suffer from the same disease — instead positing alternative diagnoses from post-concussion syndrome to neurodegenerative diseases.

Since then, hundreds more cases of the mysterious illness have been identified, and another provincial investigation has been ignited. As of time of writing, Marrero said 516 suspected cases and 51 deaths have been reported — with others in “advanced levels of neurodegeneration or near death.”

Through his investigations, Marrero found a large majority of his patients carried elevated levels of herbicide, especially glyphosate and glufosinate, and heavy metals in their blood. Rare, autoimmune antibodies were similarly detected in a large number of Marrero’s patients, the neurologist said.

Does a mystery brain disease exist?

After perusing through six years of patient health and autopsy records from two hospitals, the new study —  — suggested the mystery illness is not one singular disease but a collection of ailments.

It’s a conclusion similar to that of the 2021 provincial investigation.

The researchers examined the cases of 25 patients who received a second, independent evaluation after their initial diagnosis. These included 11 people who died and received autopsies; cases were sourced from New Brunswick’s Horizon Health Network and Toronto’s University Health Network.

Based on the initial assessments, secondary evaluations and autopsies of the 11 deceased patients, the authors concluded there was a less than 0.1 per cent chance of the neurological illness being a new disease. Accounting for all 25 patients, the probability of there being no new disease was between 87 and 100 per cent, according to the paper.

“In fact, we found that in 100 per cent of the cases we were able to evaluate, we were able to make an alternative diagnosis,” Lang told the Star. 

Instead of a single, new disease being the culprit, the researchers identified known ailments in each patient from functional neurological disorder and Parkinson’s disease to traumatic brain injury.

The researchers also argued against a common environmental factor like glyphosate being the cause of the illness, writing that the broad range of diagnoses observed in the 25 cases are “not typically attributable” to a single cause.

Potential issues with the study

Advocates tell the Star the researchers were asking the wrong question: “It was never about whether these patients were sick or had neurodegenerative diseases, whether those diseases were known or unknown,” said patient advocate Kat Lanteigne, a former director of non-profit BloodWatch.

“It was: Why do so many patients have these neurodegenerative diseases in such a small area? The statistics don’t match to anywhere else in Canada.”

Quigley Cormier, who is also a patient advocate, agreed. She was disappointed that the study did not delve further in explaining the elevated levels of environmental toxins or autoimmune antibodies in patients: “What’s not in a paper is equally as telling as what’s in a paper,” she said.

In response, Lang said: “I don’t think the evidence is there. We need more epidemiological evidence to support the claim that there are excessive numbers of patients in that region.”

Lang also noted that studies have shown a considerable proportion of people living in rural environments have elevated levels of herbicides in their blood: “That doesn’t mean that their neurological problem is caused by that. Especially if their neurological problems vary from a head injury to Parkinson’s disease.”

Both Lanteigne and Quigley Cormier expressed concerns whether consent was properly obtained for the patients included in the study. The researchers say they obtained “verbal or written consent … from all patients and/or families or waived by the respective research ethics boards.”

“Were patients aware of how the data would be used?” Quigley Cormier asked. “In the past, we’ve given consent to receive medical support, and then we find out later that they have information we did not consent to give.”

For his part, Lang said: “Research ethics boards were appropriately contacted, and in every case, either true consent or waiver of consent was obtained.”

The authors themselves recognized their study involved relatively few participants. But “despite the small numbers, our statistical calculations strongly support the premise that no new disease exists,” they argue.

“I think the takeaway message is that we have no evidence that there is a mystery disease,” Lang said. “What we feel is that patients that are claimed to have this condition need to be re-evaluated.”

“These patients need to be supported... They’ve been harmed, and we really feel that something needs to be done in a concerted basis. That really is up to the health care system, up to public health and the Ministry of Health — and our own group is very willing to help support that process.”