​Advocates say they don't trust N.B. health minister to do fair probe of mystery illness

An advocate for New Brunswickers suffering from unexplained neurological symptoms says a letter obtained by CBC News suggests Health Minister Dr. John Dornan wasn't truthful astir his relation successful the removal of a Moncton neurologist from his station at the session treating galore of the patients.

The missive dated July 4, 2022, shows it was Dornan — then CEO of the Horizon Health Network — who informed Dr. Alier Marrero his information successful the Moncton Interdisciplinary Neurodegenerative Diseases Clinic would soon cease.

"Despite our repeated attempts to pass you of our expectations and the deficiencies successful your performance, you person not demonstrated a sustained quality to conscionable our expectations," Dornan wrote.

Dornan is present overseeing Premier Susan Holt's pre-election pledge arsenic Opposition person to launch a transparent technological probe into the "mystery illness" that Marrero says is making much than 500 radical successful New Brunswick and six other provinces sick.

The mandate missive Dornan got erstwhile helium became curate includes "a technological reappraisal into the enigma encephalon disease."  

WATCH | 'We're calling connected Premier Holt to measurement in': 

Advocate Stacie Quigley Cormier of Dalhousie Junction says she asked Dornan during a gathering past month whether he had "any engagement whatsoever" in Marrero's removal from the MIND Clinic at the Moncton Hospital.

"He said unequivocally, 'No,' and helium repeated it astir 3 times," she alleged.

Knowing present that Dornan was down Marrero's removal "raises a batch of concerns" astir whether helium tin pb an objective investigation, Quigley Cormier said.

"We're calling connected Premier Holt to measurement successful and to denote publically that Public Health Agency of Canada is going to instrumentality the technological pb connected this due to the fact that there's a struggle of involvement with members astir the array that we can't beryllium satisfied with an probe that is led by them," she said, referring to Dornan and Chief Medical Officer of Health Dr. Yves Léger.

Holt, Dornan and Léger did not respond to requests for interviews. Nor did Marrero.

1st lawsuit dates backmost 10 years

It was aboriginal 2021 erstwhile the nationalist learned that Public Health was monitoring much than 40 New Brunswick patients with symptoms akin to those of Creutzfeldt-Jakob disease, a uncommon and fatal encephalon disease. The archetypal lawsuit dated back to 2015, according to an internal memo.

Marrero, who sounded the alarm astir a imaginable enigma disease, said astatine the clip it was not considered genetic, based on preliminary data, and could beryllium contracted from water, nutrient oregon air.

"It astir apt is simply a caller disease," Dr. Jennifer Russell, then-chief aesculapian serviceman of health, told reporters.  

The former Higgs government launched an investigation into the clump of 48 patients, aged 18 to 85, located chiefly connected the Acadian Peninsula and successful the Moncton region. Quigley Cormier's stepdaughter Gabrielle Cormier, 23, was 1 of the youngest.

The state consulted experts from some levels of government, but wrong 3 months enactment meetings with federal experts and much than $5 cardinal from the Canadian Institutes of Health Research connected hold. Instead, it created its ain oversight committee.

In February 2022, that committee concluded the cases, showing symptoms ranging from achy musculus spasms and hallucinations to representation nonaccomplishment and behavioural changes, did not person a communal cause. 

The committee recovered "potential alternative diagnoses" for 41 of the patients, including Alzheimer's disease, Lewy assemblage dementia, post-concussion syndrome and cancer, Russell said.

Paperwork demands

Marrero was sidelined from that investigation. His subsequent removal from the MIND Clinic sparked questions astir his abilities and tainted his reputation, said Quigley Cormier.

It besides meant patients similar her stepdaughter had to permission the clinic and its interdisciplinary attraction if they wanted to instrumentality with Marrero and spot him astatine Vitalité's Dr. Georges-L.-Dumont infirmary successful Moncton instead, she said.

No details astir wherefore Marrero was removed are provided successful Dornan's letter, but Health officials person said the neurologist "struggled to fulfil his legally required notification duties."

Under the Public Health Act, aesculapian professionals indispensable study notifiable diseases, including certain "unusual illnesses" to the section by filling retired paperwork.

Marrero asked for assistance with the one-page notifiable diseases and events notification forms but alleges helium was alternatively threatened with disciplinary action. The Health Department subsequently created enhanced surveillance forms, requiring further information.

Meanwhile, Gabrielle's health,  "like different patients' health, continues to decline," Quigley Cormier said. She said Gabrielle has uncommon antibodies affecting her vision, equilibrium and cardinal tense system.

Seeks recusal of main aesculapian officer

Lori Ann Roness, a diligent advocator in Sackville, wrote an unfastened "call to action" letter to Holt and Dornan past month, signed by much than 70 patients and household members.

She asked the state to petition instantly that the Public Health Agency of Canada lead the investigation "to guarantee autarkic technological integrity and credibility," and to unafraid the wealth offered by the Canadian Institutes of Health Research.

She also asked that Léger recuse himself from the investigation for what she called a "failure to enactment successful the champion involvement of nationalist health." Roness did not elaborate successful the missive but refers mostly to a "bias" against Marrero and a deficiency of resources.

In a followup missive past week, obtained by CBC News, Roness detailed concerns astir the "accuracy of statements" Léger made in a Feb. 25 letter to First Nations chiefs astir the "neurodegenerative illness of chartless origin."

Roness, who works with First Nations but does not talk connected their behalf, wrote that Léger implies "the thought of imaginable biology causes lies exclusively with Dr. Marrero."

"Actually, Dr. Marrero has been advocating for autarkic technological probe that considers each possibilities, including but not constricted to, biology factors," wrote Roness, who tested precocious for copper aft her father, Ralph, 80, developed an unexplained tremor successful 2023 and tested precocious for arsenic.

Marrero has warned that immoderate patients' humor enactment showed elevated levels for compounds recovered successful herbicides, such as glyphosate, which is utilized successful agriculture and successful concern forestry operations, and said much investigating should beryllium done to regularisation retired biology toxins, specified arsenic BMAA, which is produced by blue-green algae.

But Roness contends the Public Health Agency of Canada — not Marrero — was archetypal to suggest considering biology factors.

"Focusing solely connected Dr. Marrero makes this contented astir him, erstwhile it is truly astir the patients. And much importantly astir the state arsenic a full and what is going connected here."

She noted the humor and urine samples of Marrero's patients are tested by autarkic labs in Ontario, Quebec, and the Mayo Clinic successful the U.S., among others. 

Patient full climbs to 507, deaths scope 50

Roness besides takes contented with Léger's connection that Public Health doesn't person capable accusation to measure claims astir potential environmental exposure.

According to her, Marrero has submitted 381 notifiable diseases and events notification forms, and 227 enhanced surveillance forms, arsenic of her March 6.

"Those are conscionable the radical [Marrero] knows about;" Roness said in an interview. There could beryllium others, including people who don't person a doctor to notation them to specialists.

Marrero wrote a missive Feb. 24 to Dornan, Léger, federal Health Minister Mark Holland and Canada's Chief Public Health Officer Dr. Theresa Tam in which helium said the fig of patients suffering from unexplained neurological symptoms has accrued to 507, in seven provinces. These see New Brunswick, Nova Scotia, P.E.I., Newfoundland, Ontario, Quebec and Alberta.

About 127 of them are inactive nether investigation, he wrote. Three much patients have died since helium wrote to Dornan connected Jan. 30, raising the decease toll to 50. 

Marrero said his bureau has provided "more than ample evidence" that an "urgent, thorough, and multidisciplinary investigation" is needed, yet helium continues to look important paperwork and has received no update on the investigation.

'How galore much radical person to die?'

Roness questions wherefore the forms Marrero has submitted to day aren't capable to commencement the probe now, and whether the anticipation of chemicals, pesticides and herbicides being a origin has created a "reluctance to analyse further."

"How galore much radical person to die? Are they waiting for a tribunal case?" she asked.

She wants politicians and high-level bureaucrats to admit thing is wrong.

"Something is fishy successful the state of New Brunswick, and I would similar the decision-makers to get successful interaction with their humanity and inquire themselves, if their loved 1 oregon themselves had an arsenic speechmaking successful the thousands erstwhile it should beryllium nether 60, what would they do?"

Feds accidental N.B. is lead

Public Health Agency of Canada spokesperson Tammy Jarbeau said completing the provincial notification process and related information postulation is the indispensable adjacent measurement to pass immoderate review. 

"Until information postulation and fulsome investigation is complete, immoderate comments made successful the lack of this remains speculative," she said successful an email.

But New Brunswick is the pb jurisdiction, Jarbeau said.

"PHAC continues to support an unfastened dialog with New Brunswick … and remains acceptable to supply further support."

Canadian Institutes of Health Research, for its part, "remains acceptable to supply probe enactment should a petition beryllium made by those starring the probe successful New Brunswick," said spokesperson David Coulombe.