Patients ask Holt to intervene in N.B.'s mystery brain illness investigation

Two people chosen to speak for hundreds of New Brunswick patients suffering unusual neurological symptoms are calling on Premier Susan Holt to intervene in the province's investigation into the so-called mystery brain illness.

In an open letter, Sarah Nesbitt and Stacie Quigley Cormier say that for years, New Brunswick Public Health demanded Dr. Alier Marrero, the Moncton neurologist who first drew attention to the symptoms, fill out enhanced surveillance forms and provide "every single detail of our patient files."

But Dr. Yves Léger, the chief medical officer of health, didn't provide this raw data to the Public Health Agency of Canada for a scientific review of his investigation, the letter said. He sent aggregate data instead.

"It is a stunning betrayal of our trust to learn that our cases and data will not be analysed in full by an independent scientific panel," wrote Nesbitt and Cormier, who are serving as co-liaisons between the government and patients.

In health care, aggregate data refers to the summarized, combined information from multiple individual patient records or sources. It's used to understand trends and patterns at a population level, rather than focusing on individual patients.

Léger confirmed in an email to the patient advocates, shared with CBC News, that the draft data analysis Public Health sent to the Public Health Agency of Canada in May contained only "aggregate-level data" for the 222 patients with undiagnosed neurological illness who are included in this investigation.

The letter is the latest in the ongoing debate over whether there is a mystery illness in New Brunswick, as Marrero and three other physicians flagged as possible nearly five years ago, and the quest for answers about what's making people sick. 

What started as a cluster of 48 patients, primarily on the Acadian Peninsula and in the Moncton region, has grown to more than 500 across seven provinces, according to Marrero.

Symptoms range from painful muscle spasms and hallucinations to memory loss and behavioural changes. Fifty people have died.

Some patients have shown elevated levels of certain environmental substances.

A recent scientific study, published in the Journal of the American Medical Association, or JAMA Neurology, found no evidence of a mystery brain disease.

The researchers, who reassessed 25 of the 222 patients, including 11 who have died, concluded they had well-known conditions, such as Alzheimer's and Parkinson's, traumatic brain injury, and metastatic cancer.

After the JAMA report, Holt said it was important New Brunswick push ahead with its own investigation into the disease because the question of why New Brunswickers have been getting sick hadn't been answered. 

Officials have said the main purpose of the province's investigation is to consider whether environmental substances, such as the herbicide glyphosate or heavy metals, are a factor. The objective is not a "detailed clinical review of patient records," the government website says. 

The data analysis phase of the investigation began in March, and the results were shared with the Public Health Agency of Canada.

Department of Health officials did not respond to a request to explain exactly what data was or was not provided to the federal agency.

Neurologist 'alarmed' by 'ignored' data

According to Marrero, who attended a June 20 meeting with Public Health officials, all the clinical data he provided, such as MRIs, CTs, and brain activity scans, was "ignored in totality."

All neurological autoimmune antibodies and most of the heavy metal test results were also excluded from the information sent to the agency, Marrero wrote in a letter to provincial and federal officials, expressing "alarm."

Meanwhile, only two of four herbicide-related products tested in patients were analyzed, and "only the minority" of results in a "qualitative manner," according to Marrero. 

Those considered "above range" for glyphosate and the metabolite aminomethylphosphonic acid, or AMPA, were compared only to Atlantic Canadian data, he said.

Glufosinate and the metabolite 3-methylphosphinicopropionic acid, known as 3-MPPA, were excluded, Marrero said.

"It will clearly be nearly impossible for PHAC to reach any conclusion or meaningful recommendations with such limited and partially interpreted set of information," wrote Marrero,

In his letter, he "urgently" requests all raw data and clinical information be submitted to the federal agency.

Patients want raw data sent

The June 25 letter from Nesbitt and Quigley Cormier said patients and their families "collectively demand" Holt direct Public Health to send the raw clinical data for all patients to the agency.

They also asked that a formal request be made "for a detailed forensic analysis by their independent scientific experts."

The request was signed by 60 patients of Marrero's and family members in New Brunswick, Nova Scotia and Ontario, who have been diagnosed with "high, sometimes toxic, levels of heavy metals, herbicides, and rare antibodies, and who are enduring the impacts of serious neurological symptoms and disease."

Patients and families also want Léger replaced as the lead of the province's investigation.

Nesbitt and Cormier wrote that Public Health and the government "seem to be caught up in a cycle of delay tactics."

They alleged these tactics include "isolating and discrediting the diagnosing physician, dismissing legitimate, scientific lab results, creating doubt, and replacing promised investigations with pseudo reviews that distill information into superficial, and partial bytes that have no scientific value."

They noted that last summer, during the provincial election campaign that led to a Liberal victory in October, Holt pledged to launch a transparent scientific investigation.

"It is imperative that there be meaningful and immediate action on the part of the Government of New Brunswick."

Raw data not required, PHAC says

CBC News requested an interview with Holt but was told she was not available.

CBC also requested interviews with Léger and Health Minister Dr. John Dornan.

In an emailed statement, Dornan said only that the government has "full faith" in Léger.

He did not address the data concerns.

According to the Public Health Agency of Canada, the data provided by Léger's office "had been aggregated (no identifying information) to protect patient privacy and confidentiality."

Spokesperson Anna Maddison declined to elaborate on the nature of the aggregated data provided, directing inquiries back to the province.

But she said raw data wasn't requested and isn't required for the agency to conduct its review of the New Brunswick analysis.

'That's not science'

Nesbitt isn't convinced. 

"They claim scientific review, and that's not science," she said in an interview from her home in Canaan Station. "In order to do science, you need the actual numbers and actual data to come to the conclusions."

Nesbitt, 42, a patient of Marrero's who tested high for glyphosate, manganese, arsenic, aluminum, copper, and two antibodies after she developed a number of health issues, said she's hopeful Holt will act.

"The sooner we get through this, the sooner we find out what the cause is, the sooner we can help patients," she said.

Maddison did not respond to questions about how long the federal review will take. She said the agency can provide additional support to Léger's office if asked.

A provincial report with recommendations is expected later this summer.