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A battle over Canada’s mystery brain disease

bbc.com

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Re: A battle over Canada’s mystery brain disease

#131

Post by OutOfHere »

devmor wrote: post #56

This is such a frustrating situation to read about, because it is clear that Dr. Marrero is out of his depth, but it’s also clear that whatever this cluster is - real or imagined - was horribly mismanaged by the health officials in charge. The fact that the investigation was disbanded simply because the patients had symptoms that can be tied to existing diseases is utterly asinine. As if there’s no reason to investig…

The doctor is a distraction that keeps tripping up everyone here. Once the real cause is discovered, he will move on. If a real cause is not discovered, it's probably due to an insufficient investigation, in which case the investigation should continue.

Re: A battle over Canada’s mystery brain disease

#132

Post by jacquesm »

Waterluvian wrote: post #124
jacquesm wrote: post #114

Earlier quoted context omitted.

This was one of the more surprising things to me when I lived in Canada: that there is so much of this. Depending on which region you are in you will either have state monopolies on the strangest things and/or a couple of families that have their fingers in just about every pie. And don't get me started on the telecommunications sector.

I wonder if this is largely a function of geography and population. Do we see similar strange things in countries like Australia, Sweden, etc.? Kind of like a small town effect at the national scale.

I think it goes back all the way to the founding days of Canada, essentially the Hudson Bay Company.

Re: A battle over Canada’s mystery brain disease

#133

Post by BenoitEssiambre »

I know doctors who've worked with Marrero and they seem to be split in their opinion. They seem to agree he tends to be "excessively thorough", frequently sending tests to labs across the world. This makes him liked by desperate patients with potentially incurable diseases who want someone to "do something".

They are split on whether his thoroughness is just fueling false hopes and sending patients down unnecessary rabbit holes or if he could have potentially identified a real issue.

Re: A battle over Canada’s mystery brain disease

#134

Post by whimsicalism »

ggm wrote: post #39
closewith wrote: post #15

Earlier quoted context omitted.

What did ME and what post covid syndrome show?

The NIH/RECOVER programme and equivalents worldwide provide a path to treatment for ME/CFS. Prior to covid, substantive funding for ME research was too small to explore disease pathways and diagnostics. Many ME sufferers were told their disease was solely treatable with CBT, and lacked aetiology. Basically, they were denied any validation of having a disease. The NB thing, right now is "no common cause" and probably…

What you are stating is considerably more controversial among medical researchers than you claim. I find HN tends towards these sort of views.

Re: A battle over Canada’s mystery brain disease

#136

Post by whimsicalism »

nickhodge wrote: post #97

FND == neurologist gaslighting the patient. Formerly known as hysteria.

FND is a useful label because it helps provide clarity, feeling of responsiveness, and direction towards effective treatments like CBT, rather than calling a patient experiencing real discomfort/disability ‘hysterical’.

i do think we have to think hard about how we want to deal with the rapid expansion of FNDs and social contagion.

Re: A battle over Canada’s mystery brain disease

#137

Post by whimsicalism »

zoeysmithe wrote: post #38

Its hard not to see this as FND and similar conditions with a cult of personality around a charming but misguided doctor. Lang's team really seems to have solved this mystery, but some patients seem to prefer the allure of a mystery illness and the one young lady in the article seems to have munchausen by proxy-esque parents. The article ends in a heart breaking way. The one woman is applying for MAID. I wonder if sh…

MAID for an FND is crazy, i hope Canada is not so ridiculous

Re: A battle over Canada’s mystery brain disease

#138

Post by skrebbel »

whimsicalism wrote: post #134
ggm wrote: post #39

Earlier quoted context omitted.

The NIH/RECOVER programme and equivalents worldwide provide a path to treatment for ME/CFS. Prior to covid, substantive funding for ME research was too small to explore disease pathways and diagnostics. Many ME sufferers were told their disease was solely treatable with CBT, and lacked aetiology. Basically, they were denied any validation of having a disease. The NB thing, right now is "no common cause" and probably…

What you are stating is considerably more controversial among medical researchers than you claim. I find HN tends towards these sort of views.

Fwiw I downvoted you because you didn't even bother to specify which of the GP’s many statements you think are controversial, nor why.

Re: A battle over Canada’s mystery brain disease

#139

Post by darubedarob »

jacquesm wrote: post #114
patcon wrote: post #77

I grew up in New Brunswick. It is a strange place politically. I find it wild that the BBC never mentioned the most glaring underbelly of this: New Brunswicks most significant employer for the past 100 years is Irving Oil & Irving Paper and Irving Forestry. They are different arms of a privately held family-run business, run by the descendants of the original founder (whose records are not as public as a traded compa…

This was one of the more surprising things to me when I lived in Canada: that there is so much of this. Depending on which region you are in you will either have state monopolies on the strangest things and/or a couple of families that have their fingers in just about every pie. And don't get me started on the telecommunications sector.

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Re: A battle over Canada’s mystery brain disease

#140

Post by darubedarob »

ajb wrote: post #127
elric wrote: post #81

Earlier quoted context omitted.

It's a diagnosis that's made only after excluding a wide range of other potential causes for the symptoms (like brain damage, structural abnormalities, strokes, seizures, MS, infections, ...). It's not just a case of "we don't know", it's a case of "we've looked at everything under the sun and nothing fits". Sounds like one of those things that needs more research.

Saying to a patient "you have X" can communicate three different things: - a casual diagnosis: your problem is caused by C - a syndrome: you have this collection of symptoms which often appear together, we don't know what causes it, we may have some treatments that can help. The difference between these two is often not communicated well, but they are valid diagnostic categories. There is a bigger problem with the th…

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