Patients, families call on N.B. to reopen investigation into neurological illness

Some New Brunswickers with neurological illnesses have renewed their plea for an investigation into possible environmental causes of their suffering.

The call from patients and their loved ones comes a little more than a year after Public Health closed its investigation into a cluster of patients who have what had been considered an unknown neurological disease.

At the time, Public Health said a team of neurologists had discredited an earlier theory by a Moncton doctor, and the illnesses in the cluster were not unknown after all.

But that finding hasn't dissuaded people affected by the illnesses from pushing the provincial government for new tests to determine possible environmental causes for their symptoms, which range from memory loss to muscle spasms and visual hallucinations.

Stressful for families

"The stress of these unnecessary delays has compounded the stress of watching our loved ones die slowly, and in some cases die,"  Steve Ellis said Tuesday during a news conference he and about 20 other people attended in Fredericton.

Ellis's father, Roger, was identified as one of the 48 patients in the original cluster, which the province first flagged publicly in early 2021.

At the time, Dr. Alier Marrero, a neurologist with Vitalité Health Network, led the investigation and believed the cause could have been environmental.

By fall, New Brunswick Public Health had sidelined Marrero from the investigation and cast doubts on his theory a cluster of patients was suffering from a mystery neurological illness.

In February 2022, Chief Medical Officer of Health Dr. Jennifer Russell announced that an oversight committee made up primarily of neurologists had reviewed records from the 48 patients and found that while some had unusual symptoms, they didn't have a common, unknown illness.

According to the committee's report, "potential alternative diagnoses" could be found for 41 of the 48 patients, including illnesses such as Alzheimer's disease, Lewy body dementia, post-concussion syndrome and cancer. Ten of the 48 patients have died.

Speaking at Tuesday's news conference, Ellis said he and other families don't trust the findings by the oversight committee, claiming its members didn't independently examine patients.

Ellis also referred to a letter Marrero sent to government officials in January, also urging them to test for environmental factors.

Marrero wrote that he's concerned about an increase in patients exhibiting the early signs of a neurological syndrome, adding that he's been following 147 such cases, with 41 of those being in younger patients. Marrero said he's also receiving "a number of referrals" from other provinces, including Nova Scotia, Alberta and Quebec.

Doctor calls for sense of urgency

Marrero also referred to early discussions about possible environmental toxins, and one specifically outlined, known as BMAA, which is produced by cyanobacteria.

"I believe there is an urgency to act promptly and use all means necessary to investigate and get to the root cause or causes of the above issue," Marrero wrote.

Speaking during question period in the New Brunswick Legislature, Green Party MLA Megan Mitton referenced Marrero's letter and asked whether the province would allow the Public Health Agency of Canada to investigate possible environmental causes.

In response, Health Minister Bruce Fitch said Public Health is reviewing Marrero's letter, but he took issue with the suggestion the province was blocking the federal agency from doing any further investigating.

"Inference that the member opposite makes about me standing in the way is incorrect, Mr. Speaker," Fitch said. "There's a high degree of cooperation between New Brunswick public health and the Public Health Agency of Canada.

"And Mr. Speaker, the Public Health Agency of Canada ... looked at the results of the  investigation that was done here in the province of New Brunswick by the experts, and they concluded the similar outcome.

"So that is why the the further investigation stopped, is because Public Health Agency of Canada agreed with the findings that were found here in the province of New Brunswick."

Concerns about herbicides

Ellis told the news conference that patients and families concerned that environmental toxins played a part in the illnesses had pursued independent tests. 

He could not give a number but said "many"of these tests showed elevated levels for compounds found in herbicides such as glyphosate.

Melissa Nicholson said her 59-year-old mother, who has suffered for four years with a neurological disorder, received test results indicating she had levels of glyphosate in her body that were 47 times higher than the acceptable level.

Nicholson and others said these findings show the need for a formal investigation into possible environmental causes.

"If it's something in the environment that's causing this illness, it's not just going to go away on its own," Nicholson said. "We need to know what's causing this and what the source is."