Patient advocate calls for retraction of mystery brain disease report from U.S. medical journal

An advocate for New Brunswick patients suffering from unusual neurological symptoms is calling for the retraction of a recent scientific report that found no evidence of a mystery brain disease in the province.

Katherine Lanteigne, the former executive director of BloodWatch, is alleging research bias and privacy breaches in the study published last month in the Journal of the American Medical Association, or JAMA Neurology.

Lanteigne said she has written to the University Health Network's research ethics board in Toronto and to the Horizon Health Network and its MIND Clinic in Moncton. She  intends to file formal complaints of research misconduct as well.

She has asked the University Health Network, or UHN, to issue a formal apology for allegedly "flagrantly violating the privacy and dignity of patients."

"This study strips patients of their dignity, it runs roughshod over their protected privacy rights and is another example as to how and why patients are retraumatized by the medical establishment that they should be able to trust," Lanteigne wrote in her May 14 letter, provided to CBC News.

It's the latest development in a debate over whether there is a mystery new illness, as Moncton neurologist Alier Marrero and three other physicians flagged as possible nearly five years ago, and the quest for answers about what's making people sick.

The study, led by neurologist Anthony Lang, a senior scientist at UHN's Krembil Brain Institute, reassessed 25 of 222 patients diagnosed by Marrero as having a "neurological syndrome of unknown cause." Their symptoms ranged from painful muscle spasms and hallucinations to memory loss and behavioural changes.

The researchers concluded all 25 patients, including 11 who have died, had well-known conditions, such as Alzheimer's and Parkinson's, functional neurological disorder, traumatic brain injury, and metastatic cancer. 

Despite the small sample size, "the chances of any of those other individuals having a mystery disease was less than one in a million," Lang has said, describing the numbers as "very convincing."

The province continues to conduct its own investigation to "further understand concerns" Marrero raised about  elevated levels of certain environmental substances — such as heavy metals and the herbicide glyphosate — in some  patients, who he says now number more than 500 across seven provinces. Fifty of them have died.

In her letter to the University Health Network, Lanteigne contends five of the 13 authors failed to publicly disclose they had prior involvement with the New Brunswick cluster of patients, which she describes as "deeply problematic as it demonstrates a research bias."

Lanteigne does not have any scientific or medical training but said she understands public policy and people's rights through her previous advocacy work.

She said has read nearly 30,000 pages of documents obtained through information requests about the cases.

According to Langeigne, Sylvia Gautreau of the MIND Clinic, where Marrero used to treat patients, did not reveal she served as researcher for the province's oversight committee during an investigation into the original cluster of 48 patients in 2021.