Scientist working on NB’s mysterious brain condition claimed he was ‘cut off’ for ‘political’ reasons

A leading federal scientist claimed he was not allowed to continue researching a mysterious neurological disease that has sickened dozens of people in New Brunswick, according to an email obtained by CBC News.

Dr. Michael Coulthart, head of the Creutzfeldt-Jakob Disease Surveillance System, wrote last October that he was “essentially cut off” from working on the file at the public health level for reasons he “could only regard as political.” .” He said he was concerned that 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 any individual neurologist,” microbiologist Coulthart wrote last October. “A few cases may be best explained by the latter, but there are simply too many (now more than 200).”

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

The agency declined an interview but sent a statement saying that Coulthart was initially called to help investigate the series of illnesses because he specializes in Creutzfeldt-Jakob disease (CJD) – an extremely rare and fatal brain disorder that is caused by brain proteins ‘misfolding’ into an abnormal shape.

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“Creutzfeldt-Jacob disease is Dr. Coulthart’s area of ​​expertise and his work at the agency, so once prion disease was ruled out, he was no longer involved in this matter,” read PHAC’s email.

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

Even though the province concluded its investigation more than two years ago, people affected by the disease have continued to push for more testing for years — especially to determine whether environmental causes could explain their symptoms.

Politicians ‘jumped’ to say nothing was wrong, says scientist

In his email, Coulthart said his “strong hypothesis is that there is some environmental exposure – or perhaps a combination of exposures – that causes and/or precipitates a variety of neurodegenerative syndromes” in people already predisposed to several conditions where proteins misfold. , including Parkinson’s, Alzheimer’s or Huntington’s disease.

The email stated that “this type of phenomenon does not fit easily within the superficial classification paradigms of diagnostic pathology”, creating “a loophole” that politicians have eagerly jumped through to conclude that there is nothing coherent about the is in hand.

An excerpt from an email written by Dr.  Michael Coulthart on October 12, 2023.An excerpt from an email written by Dr.  Michael Coulthart on October 12, 2023.

An excerpt from an email written by Dr. Michael Coulthart on October 12, 2023.

An excerpt from an email written by Dr. Michael Coulthart on October 12, 2023. (CBC)

The New Brunswick Ministry of Health first warned the public about a possible unknown neurological brain disease in early 2021, after more than 40 people were found to be suffering from a condition with similar symptoms to CJD.

In some patients, who ranged in age from 18 to 85 years, these symptoms included painful muscle spasms, visual and auditory hallucinations, memory loss, and personality changes. The disease started with muscle pain and developed into debilitating dementia in some.

Coulthart was part of a national PHAC working group that met in January 2021 to support New Brunswick in its investigation, but the partnership was only active for a few months before the province changed direction and created its own independent oversight committee that spring.

The province’s investigation included the 48 cluster patients identified in April 2021. New referrals continued to come in, but documents show that these were not added to the original cluster and therefore not included in the committee’s work.

PHAC did not analyze any files

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

In a statement to CBC News on Friday, the New Brunswick Health Department (PHNB) said it is “not hindering any investigation into this area of ​​investigation.”

The committee concluded that there was no mysterious neurological syndrome and that the patients in the original cluster may have been misdiagnosed. The final report marked the end of the province’s investigation in February 2022.

“The oversight committee unanimously agrees that these 48 people should never have been diagnosed as having a neurological syndrome of unknown cause and that based on the evidence reviewed, such a syndrome does not exist,” said former Chief Medical Officer of Health Dr. Jennifer Russell during a press conference.

The report also cast doubt on 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 fill out required paperwork on his patients — though the agency noted that it has not “analyzed” those files because the province, which is in charge of the case, has not asked them to do so. doing.

“PHAC continues to maintain an open dialogue with PHNB and remains willing to discuss additional support if requested,” the email said.

Coulthart wrote his email on Oct. 12 – just over 18 months after the province’s investigation ended.

Finally, he wrote, “I believe the truth will manifest itself in due time, but for now all we can do (redacted) is continue to gather information on the cases that come to us.”

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

Only 29 reports received, the province’s Ministry of Health says

In its statement Friday, the New Brunswick Ministry of Health said it had received a total of only 29 completed reports submitted by Marrero over the past year, and that those cases were “under review.”

“Public Health New Brunswick continues to dedicate resources to assist Dr. Marrero with his legally required reporting,” the statement said.

“Once all reports have been completed, the Ministry of Health can review the information and determine if additional measures are necessary. To date, Public Health New Brunswick has not received any similar reports from other physicians.”