Canada - Unknown brain disease in New Brunswick

https://en.wikipedia.org/wiki/Formication
Not a hallucination, but says a certain something about the attitude of those investigating.

....and what's with the constant 'don't panic' message in our culture - panic must have some survival value, or it wouldn't have been evolutionarily preserved. i.e. if it was as bad for peoples survival prospects as suggested then people who panicked would have died out millions of years ago, and the purely rational ones been the only survivors to produce more erm...people.
 
I'm not going to read the guardian article but the CBC reporting was that when the news broke and there was no clear answer as to what was happening local people became concerned and worried about whether they might be affected eventually. This seems a reasonable concern to me.

There is no hint of all in the head thinking in the CBC article with regards to searching for answers. As is typical (IMO) from a Canadian stand point they are considering environmental issues.

https://www.cbc.ca/news/canada/new-brunswick/mystery-neurological-disease-neil-cashman-1.5957196
 
So now they have 2 clusters of a novel strange brain disease in Canada?

One was reported a month or 3 ago - as a total mystery, baffling the experts, possibly in carpet weaving, or maybe plumbing, in Canada - the type of experts wasn't specified, presumably if it was medical experts they would have said - but it was just 'experts'.

I can't read the article as I am not prepared to give them my details, I didn't have to for the last story on a similar subject, in Canada, a month or more ago.
 
The Washington Post article gives a link to a New Brunswick public health report:
https://www2.gnb.ca/content/gnb/en/departments/ocmoh/cdc/neuro_cluster.html

It sounds awful.
Washington Post article said:
One theory is that the syndrome is caused by an entirely new prion disorder. Another is that it’s tied to exposure to an environmental toxin.

One toxin that has come under scrutiny is beta-Methylamino-L-alanine, which is produced by cyanobacteria, or blue-green algae blooms. Another is domoic acid, a naturally occurring toxin produced by certain types of algae, that was responsible for a deadly contaminated seafood outbreak in Canada in 1987.
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I can read the article by deleting any cookies associated with the washington post, then it's readable when I refresh the page.

“The suffering is immense … because it’s beyond physical,” said Marrero, who works at Moncton’s Dr. Georges-L.-Dumont University Hospital Center. “There’s also the neuropsychiatric and moral suffering of the patients that is only partially relieved by medications.”
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I'm curious about the phrase "moral suffering". I've never heard of it before so I did a web search for it. I came across this :

https://oxfordmedicine.com/view/10.1093/med/9780190619268.001.0001/med-9780190619268-chapter-2

but it refers to the moral suffering of caregivers, not patients as the Washington Post does.

And this also seems to mention suffering of healthcare staff witnessing the suffering of patients :

Code: 
https://www.amazon.com/Moral-Resilience-Transforming-Suffering-Healthcare/dp/0190619260

Amazon product ASIN 0190619260
So I'm not really much the wiser.

And just an observation connected to the WP article ...

An otherwise healthy 75-year-old woman arrived at the Dumont emergency department last June. For months, she had experienced unexplained weight loss and what she described to her daughter as a “trembling sensation” inside her body. Her legs felt heavy. One arm was shaking involuntarily.
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Inner trembling is mentioned fairly frequently on the thyroid forum I read, and I've suffered from it myself. I am convinced that it is a problem associated with cortisol levels being too high or too low. I've managed to reduce my own cortisol levels and the inner trembling (invisible to anyone else) is now much more rare for me. I almost never get it now.
 
Wonko said:
So now they have 2 clusters of a novel strange brain disease in Canada?

One was reported a month or 3 ago - as a total mystery, baffling the experts, possibly in carpet weaving, or maybe plumbing, in Canada - the type of experts wasn't specified, presumably if it was medical experts they would have said - but it was just 'experts'.

I can't read the article as I am not prepared to give them my details, I didn't have to for the last story on a similar subject, in Canada, a month or more ago.
Click to expand...

It is the same cluster in the same province.
 
My cousin lives in NewBrunswick and she said the oil company Irving has a lot of power in that province. She also said that they do aerial spraying of an agent to control weeds, which would be a worry. I cannot say for sure this is what’s happening, but it may offer an explanation as of what is happening.
 
Arnie Pye said:
And just an observation connected to the WP article ...



Inner trembling is mentioned fairly frequently on the thyroid forum I read, and I've suffered from it myself. I am convinced that it is a problem associated with cortisol levels being too high or too low. I've managed to reduce my own cortisol levels and the inner trembling (invisible to anyone else) is now much more rare for me. I almost never get it now.
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Not visible no, but in my case, it can be felt by someone performing currently illegal acts, like during a hug.

Had it reported/questioned on several occasions.

Never really given it any thought.

It's just something that is.

Like pot plants, or cats.
 
Milo said:
My cousin lives in NewBrunswick and she said the oil company Irving has a lot of power in that province. She also said that they do aerial spraying of an agent to control weeds, which would be a worry. I cannot say for sure this is what’s happening, but it may offer an explanation as of what is happening.
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Absolutely terrible disease.

Wonder what that spray is. May be difficult to get to the bottom of this. Wonder if the spray can be tested for in those affected.
 
Arnie Pye said:
Inner trembling is mentioned fairly frequently on the thyroid forum I read, and I've suffered from it myself. I am convinced that it is a problem associated with cortisol levels being too high or too low. I've managed to reduce my own cortisol levels and the inner trembling (invisible to anyone else) is now much more rare for me. I almost never get it now.
Click to expand...

A trembling, thrumming inside is one of the ME symptoms. A good few years ago now on another forum I discussed this with another patient. She had a very good, well understanding, doctor and he said that what she was feeling was a turbulence in the arterial blood flow. It seemed to fit what I experience.
 
Mithriel said:
A trembling, thrumming inside is one of the ME symptoms. A good few years ago now on another forum I discussed this with another patient. She had a very good, well understanding, doctor and he said that what she was feeling was a turbulence in the arterial blood flow. It seemed to fit what I experience.
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I haven't seen any study reflecting this but it's a common symptom in Long Covid. The patient-led studies did find it, of course. None of the professional studies, because the hardest part is to know which questions to ask and they can't figure that out without working with patients. I assume it just gets lobbed in with "anxiety".

Frankly looks like part of dysautonomia. Or maybe undetected thyroid issues, it's not as if anyone has bothered doing the research anyway.
 
My only experience with internal tremors seemed to be related to taking pregabalin which it turns out according to the information leaflet in the packet has tremor as a common side effect. I’m at the less severe end of the spectrum of ME severity so this won’t be relevant to folks with more severe ME. But may be worth anyone with less severe illness looking at the side effects of any medication if getting tremors. I’m assuming Long Covid people will be getting prescribed the usual medication we get offered.
 
I have always had it as a symptom long before I was severe and before any medication. It may not be best described as a trembling as it is totally internal, a whooshing inside is a better description.

I also get a spasm inside which feels exactly like a baby kicking and in people who are thin enough they spoke about seeing ripples moving across the stomach.

All these as well as the tremors Mij mentions were accepted as common things among the people I knew with ME in the days before CFS moved the emphasis to fatigue.
 
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