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Support group for New Brunswickers with mystery illness has first in-person meeting

Click to play video: 'New Brunswick  group affected by mysterious brain disease frustrated' New Brunswick group affected by mysterious brain disease frustrated
WATCH: An online support group for New Brunswickers affected by a possible mystery neurological disease, and their loved ones, have had their first in-person meeting in Moncton. As Suzanne Lapointe reports, the group feels frustrated by a lack of clarity from the provincial government. – Feb 14, 2022

An online support group for those affected by New Brunswick’s supposed mystery neurological illness met in person for the first time on Saturday in Moncton.

“It was a chance for us to get together to show that we’re not alone and to show that we will not be silenced until we can get answers,” organizer Steve Ellis said in an interview on Monday.

His father is one of the original confirmed patients of a degenerative neurological disease that some doctors are saying is an unknown new syndrome unique to New Brunswick.

He said communication between patients, families and the province broke down after Health Minister Dorothy Shephard questioned the validity of the supposed new disease last October.

Read more: N.B. health minister questions validity of mysterious neurological disease after report

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“As I have said from the beginning, the lack of transparency is atrocious,” he said, adding he isn’t expecting the province to have all the answers.

Three MLAs were in attendance, including Green Party Leader David Coon, who says he is alarmed by the province’s lack of transparency on the issue.

“It’s extremely puzzling, how the province is handling this. None of it makes sense to me and certainly that was reinforced by what the patients and families were saying at the meeting,” Coon said on Monday.

“They feel abandoned, disrespected and fearful for the future.”

Liberal Health Critic Jean-Claude d’Amours, who also attended the meeting, echoed Coon’s comments regarding the lack of communication, and also criticized the province for not involving the federal government in the investigation of possible causes.

“Minister Shephard said last fall it’s a New Brunswick issue and will be dealt with in New Brunswick, but there is no reason and no excuse to not take help from somebody else who may have better resources,” d’Amours said.

Read more: Committee struck to investigate the nearly 50 cases of a mysterious N.B. brain disease

In a statement sent to Global News on Monday afternoon, a spokesperson for the Department of Health said, “We have been, and will continue to work with our partners, including the federal government and the Public Health Agency of Canada.

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“We have always said that if more investigation is required, we would do it.”

While no representative from the Department of Health was present at his group’s meeting, Ellis said he did receive an email from Shephard requesting a meeting when the government issues its upcoming report on the matter on an as yet unspecified date.

“As far as getting an audience with Minister Shephard [our group] has been asking for many months. Myself, I’ve been declined in writing to meet with her many many months ago and other requests have been ignored, but now she wants to meet with us,” Ellis said.

“That is definitely a positive thing that has come out of the last few days.”

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