‘No answers to our pain’: N.B. families upset after report finds mysterious brain illness doesn’t exist

FREDERICTON –

A highly-anticipated report investigating the validity of a neurological syndrome of unknown cause has found that no such illness exists.

“This does not mean that these people are not seriously ill. It means they are ill with a known neurological condition,” said New Brunswick’s chief medical officer of health, Dr. Jennifer Russell, in a press conference Thursday.

Last March, New Brunswick health officials alerted the province’s doctors, nurses and pharmacists about a possible cluster of residents with an unknown and potentially new neurological syndrome with symptoms similar to those of Creutzfeldt-Jakob disease, or CJD.

Some of those symptoms included sudden movements, hallucinations, memory loss and behavioral changes. Since then, 48 people have been identified in the cluster and nine have died.

Russell said New Brunswickers should feel confident there is nothing in their environment that could be causing such symptoms.

“Public health became aware of many theories and uncorroborated opinions being amplified in the media. Some of these rumours suggested that soil, water and environmental testing was suspected – that is untrue,” she said.

An oversight committee consisting of six independent neurologists has been conducting a clinical review of the cases since last summer. A report outlining their findings was released Thursday.

“The Oversight Committee has unanimously agreed that the individuals who were included in this cluster do not represent a neurological syndrome of unknown cause and has therefore concluded that no such syndrome exists,” the report stated.

The report broke down the 48 cases:

  • Patients who met the full case definition of mystery brain syndrome: 0
  • Patients with rapidly progressing dementia (within two years): 25
  • Patients with clinical symptoms displayed within three years: 19
  • Patients with four clinical symptoms matching the case definition: 18
  • Patients who need further investigation: 17
  • Patients who could have an alternative diagnosis (Alzheimer’s disease, Lewy body disease, post-concussion syndrome and others): 17

Health officials say all the patients have been referred to the MIND clinic in Moncton, N.B., or other “specialty providers.”

Right now, 10 are receiving treatment at the clinic. Officials say they have approval to expand the MIND clinic so that it can expedite appointments and care.

Dr. Susan Brien, vice-president of medical, academic and research affairs at the Horizon Health Network, said the clinic’s goal is to assess and improve the quality of life of patients and their families.

“I want to acknowledge the patients and families who have been patiently waiting for the results of this report,” said Brien.

The MIND clinic will continue to provide ongoing testing assessment and care and treatment to patients who do not have a diagnosis, as well as assist their families in assessing and accessing community resources.

“The clinical care and expertise that our MIND clinic provides, will continue to focus on each patient and their families and their individual needs,” said Brien.

Patients and their families met virtually with Health Minister Dorothy Shephard Thursday, ahead of the report’s publication.

“This entire process has been extremely trying for these families and this news is difficult for them to hear,” said Shephard.

“Throughout this time, they have been desperately seeking answers and hoping for a cure. It’s heartbreaking to have to tell them the syndrome did not exist. I recognize the process we put in place was frustrating for them.”

The committee also identified a lack of a defined federal and provincial process for the identification and investigation of a novel disease or condition has caused much speculation and public distrust.”

In its final report, Public Health New Brunswick has made several recommendations to ensure a similar situation does not occur again:

  • Public Health New Brunswick may require a review of cases by a second specialist physician, prior to including cases in a cluster of unknown ideology.
  • If the two physicians do not agree, the case should be presented to a board of specialty doctors, or an oversight committee for a decision.
  • The reporting and diseases regulation, under the Public Health Act, be amended to require suspect cases of a new variant of animal human prion disease be reported to public health.
  • Public Health New Brunswick should continue to work with the Canadian Health Agency to better monitor CJD.

Dr. Howard Njoo, deputy chief public health officer at the Public Health Agency of Canada, spoke at Thursday’s press conference via video link.

“Collectively, our thoughts are with the patients and the families of those involved. We understand the impacts that this investigation has had on each and every one of you,” said Njoo.

He said the Public Health Agency of Canada will continue to work with the government of New Brunswick and will build on any lessons learned during the investigation.

FAMILIES DISAPPOINTED IN REPORT

The families of the patients have been outspoken about what they say has been a lack of communication, and expressed concerns about the transparency of public health over the last year.

Steve Ellis started a Facebook support group for families after his 64-year-old father was admitted to the cluster. He said the group is “extremely disappointed and angry” with the report.

“No additional testing was conducted. No testing for neurotoxins was conducted. No case controls were performed during the “review” of the oversight committee. Our questions were not answered,” said Ellis in a statement.

He says the group started as 48, but has grown to more than 148.

“We do not need a national committee formed on the backs of our suffering. We demand scientific answers from both the Public Health Agency of Canada and from the Government of New Brunswick,” said Ellis.

Ellis’ father is scheduled to see their family doctor next week to hear what the committee has to say about his case.

“I don’t consider what the oversite committee has done as being a diagnosis,” he said.

Ellis says the report offers no answers to their pain and suffering. He’s vowing to continue pressuring the province to do a more scientific study to determine what is happening to their loved ones.

With files from The Canadian Press.

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