Scientist working on mystery N.B. brain condition claimed he was 'cut off' for 'political' reasons

A leading federal scientist claimed he wasn't allowed to keep investigating a mystery neurological illness that made dozens of people sick in New Brunswick, according to an email obtained by CBC News.

Dr. Michael Coulthart, who is the head of the Creutzfeldt-Jakob Disease Surveillance System, wrote last October that he had been "essentially cut off" from working on the file at the public health level for reasons he could "only discern to be political." He said he was worried there are more than 200 people experiencing unexplained neurological decline.

"All I will say is that my scientific opinion is that there is something real going on in [New Brunswick] that absolutely cannot be explained by the bias or personal agenda of an individual neurologist," microbiologist Coulthart wrote last October. "A few cases might be best explained by the latter, but there are just too many [now over 200]."

Coulthart did not respond to requests for comment, but forwarded an email inquiry to the Public Health Agency of Canada's (PHAC) media relations team.

The agency declined an interview, but sent a statement saying Coulthart was initially called to help investigate the string of illnesses because he specializes in Creutzfeldt-Jakob disease (CJD) — an exceedingly rare and deadly brain condition caused by brain proteins "misfolding" into an abnormal form.

LISTEN | People with brain condition struggle to understand what might be making them sick (from 2021):

"Creutzfeldt-Jacob disease is Dr. Coulthart's area of expertise and work at the agency so, once prion disease was ruled out, he was no longer involved in this issue," read the email from PHAC.

The email is the latest criticism of what patients and families have described as an unclear, inadequate response to a public health issue.

Despite the province having closed its investigation more than two years ago, people affected by the illness have continued for years to push for more testing — particularly to determine whether environmental causes might explain their symptoms.

Politicians 'leaped' to say nothing was going on, scientist says

In his email, Coulthart said his "strong hypothesis is that there is some environmental exposure — or perhaps a combination of exposures — that is triggering and/or accelerating a variety of neurodegenerative syndromes" in people who are already predisposed to different protein-misfolding conditions, which could include Parkinson's, Alzheimer's or Huntington's disease.

The email said "this kind of phenomenon does not easily fit within the shallow classification paradigms of diagnostic pathology," which has created "a 'loophole' through which the politicians have eagerly leaped to conclude nothing coherent is going on."

The health ministry in New Brunswick first warned the public about a possible unknown neurological brain disorder in early 2021, after more than 40 people were found to have been suffering from a condition with similar symptoms to CJD.

For some patients, who ranged in age from 18 to 85, those symptoms included painful muscle spasms, visual and auditory hallucinations, memory loss and personality changes. The sickness began with muscle pain and, for some, progressed to debilitating dementia.

Coulthart was part of a nationwide working group PHAC pulled together in January 2021 to support New Brunswick in its investigation, but the collaboration was only up and running for a few months before the province changed directions and created its own independent oversight committee that spring.

The province's review included the 48 cluster patients that had been identified by April 2021. New referrals continued to come in, but documents show they were not added to the original cluster and so not included in the committee's work.

PHAC has not analyzed case files

Federal Health Minister Mark Holland declined an interview request and referred questions back to the province.

In a statement to CBC News on Friday, New Brunswick's health department (PHNB) said it "does not hinder any research into this area of study."

The committee concluded there was no mystery neurological syndrome and that the patients in the original cluster had potentially been misdiagnosed. The final report marked the end of the province's investigation in February 2022.

"The oversight committee has unanimously agreed that these 48 people should never have been identified as having a neurological syndrome of unknown cause and that based on the evidence reviewed, no such syndrome exists," former Chief Medical Officer of Health Dr. Jennifer Russell said during a news conference.

The report also cast doubt on the work of Dr. Alier Marrero, who was sidelined from the investigation after identifying 46 of the 48 patients included in the original cluster. Last year, PHAC sent epidemiologists to help Morrero complete the required paperwork on his patients — though the agency noted it has not "analyzed" those files because the province, which is lead on the case, has not asked them to do so.

"PHAC continues to maintain an open dialogue with PHNB and remains ready to discuss additional support, if requested," the email read.

Coulthart wrote his email on Oct. 12 — a little more than 18 months after the province's investigation ended.

In closing, he wrote: "I believe the truth will assert itself in time, but for now all we can do [redacted] is continue to collect information on the cases that come to us."

Several lines have been redacted from the copy of the email obtained by CBC, as has the name of the recipient.

Only 29 notifications received, province's health ministry says

In its statement on Friday, the New Brunswick health ministry said it had received a total of only 29 completed notifications submitted by Marrero within the past year, and those cases "are being reviewed."

"Public Health New Brunswick continues to deploy resources to assist Dr. Marrero with his legally required notifications," the statement said.

"Once all the notifications are completed, the Department of Health will be able to review the information and determine if any additional actions may be needed. To date, Public Health New Brunswick has not received any similar notifications from other physicians."