PHAC to deploy to New Brunswick over reports of mystery brain symptoms

The Public Health Agency of Canada (PHAC) is deploying two epidemiologists to New Brunswick in September to support the province's public health team, at the request of New Brunswick's public health authority.

The move follows a letter from a high-profile neurologist warning that a growing number of abnormally young patients are facing a rapid onset of neurological symptoms.

Moncton neurologist Dr. Alier Marrero sent a letter to PHAC and New Brunswick public health in January, saying he was seeing an increase in the number of patients, and that some patients were in the "advanced stages of clinical deterioration."

In a statement, PHAC confirmed its epidemiologists will work under the supervision of New Brunswick public health and conduct a "three-day scoping exercise that will include an on-site review of patient records that have been collected to date."

New Brunswick's Department of Health said that it requested help from PHAC to support Marrero in the scoping exercise related to the timely notification of any undetermined illnesses. 

It said the additional resources will be used to help Marrero do his paperwork and that it was not reopening the investigation into a mystery neurological illness.

"Dr. Marrero has struggled to fulfil his legally required notification duties under the Public Health Act, and as a result, the department is deploying resources to support him," said department spokesperson Sean Hatchard. 

Marrero did not immediately respond to a request for comment.

Letters obtained by CBC News via access to information show terse exchanges between Marrero and New Brunswick's Chief Medical Officer of Health Jennifer Russell.

"The Public Health Act lays out the responsibility of a health-care professional to report the occurrence of a disease, infection or condition that the health-care professional reasonably believes could be a risk to the health of the population," Russell in a letter dated May 5.

"The information provided in your letters does not meet this requirement."

Marrero denied the allegation that he has not been reporting to provincial public health officials in accordance with legislative and regulatory requirements. 

"I find it regrettable that ... not only do you express no concern for the health of patients and the New Brunswick population, but you do not even acknowledge the patients in your letter," Marrero wrote.

Province closed investigation in 2022

Federal scientists have not been involved in the probe into mystery neurological symptoms since the investigation into a cluster of 48 patients experiencing neurological symptoms was closed in 2022 — a move The Guardian reported perplexed some federal scientists.

An oversight committee appointed by the provincial government determined there is no mystery brain disease, and that the majority of patients in the cluster were misdiagnosed and ought to have been diagnosed with known diseases.

That activity was conducted, and a final report issued; that cluster was investigated by independent medical professionals and no link was found between the cases.

The oversight committee cast doubt on Marrero's work, saying it "could not conclude that the main referring neurologist had sought second opinions."

Marrero has become a fierce advocate for patients. 

In his January 2023 letter, he wrote to Canada's top public health official and to Russell warning them the number of cases has grown from 48 to more than 147, claiming that some are as young as 17 years old.

He wrote that some patients are experiencing "very advance evidence of neurodegenerative diseases," including dementia, severe pain syndrome, brain and muscle atrophy and more. 

"Some of these patients are, unfortunately, in advanced stages of clinical deterioration and near the end of life," he wrote. 

He also warned that some patients' blood work showed elevated levels for compounds found in herbicides such as glyphosate, and said more testing should be done to rule out environmental toxins, including the neurotoxin BMAA, which is produced by blue-green algae.  

Families, advocates call for new investigation

Steve Ellis's father, Roger, has been dealing with serious neurological issues, including memory loss and trouble speaking, since 2019.

He and other families are pushing the provincial government to re-open the investigation.

"This is what's going to happen, and we're not going to stop until it does," he said.

He said their support of Dr. Marrero is unwavering "because he's the only one who has not abandoned any of his patients."

Kat Lanteigne, executive director of the patient advocacy group BloodWatch.org, sent a letter to federal Health Minister Mark Holland requesting that the federal government launch its own investigation.

"We will be holding both governments to account and we will not stop our advocacy work until and independent, scientific-based ethical framework is created," she said.