[HN Gopher] New Brunswick's Mystery Disease
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New Brunswick's Mystery Disease
Author : Geekette
Score : 98 points
Date : 2021-10-24 16:40 UTC (6 hours ago)
(HTM) web link (thewalrus.ca)
(TXT) w3m dump (thewalrus.ca)
| throwaway2048 wrote:
| The New Brunswick government is corrupt to the core, the entire
| province is run by the Irving family, including the government,
| so its not any kind of shock they stifle oversight.
|
| About 60% of the employees in the province are employed by Irving
| family owned businesses, they have basically total economic
| control.
| tejtm wrote:
| As a child when there I did not know that ... but I knew the
| name
|
| https://trademark.trademarkia.com/irving-75613723.html
| gruez wrote:
| >so its not any kind of shock they stifle oversight.
|
| How does suppressing this disease help the corrupt government
| and/or the Irving family?
| matthewdgreen wrote:
| The Irving businesses seem to include a number of industrial
| concerns, including oil refineries, forestry and factories.
| If environmental contamination is a possible factor in this
| disease (and here's an article suggesting that's a top
| candidate) then one of those businesses could very well be a
| source. (And even if it isn't the cause of this disease
| cluster, who knows what results might pop out of a thorough
| environmental analysis.)
|
| https://beta.ctvnews.ca/local/atlantic/2021/3/26/1_5363850.h.
| ..
| msbarnett wrote:
| If they have reason to believe that, eg, the timing of the
| appearance of this cluster lines up with (to pull a
| hypothetical out of the air) industrial waste dumping in the
| Acadian peninsula water supply, attempting to muddy the water
| over whether this is a cluster with a shared cause or a bunch
| of fluke one-offs is certainly in their interests.
| baybal2 wrote:
| NB is also the most immigration friendly province in Canada. It
| proactively imports tons of IT companies looking for cheap
| visas.
| revolvingocelot wrote:
| This is a factor often overlooked when discussing New Brunswick
| (though I'm not certain I've ever seen New Brunswick discussed
| on HN before.
|
| Add in the McCains, and that's pretty much everybody.
| bink wrote:
| The thought of an as-yet-unknown CJD-like prion disease that's
| slowly developing somewhere is absolutely terrifying. This made
| me wonder about how tests are run for prion diseases, though. Is
| it just a matter of placing the spinal fluid sample under a
| microscope or is it more complicated than that?
| ampdepolymerase wrote:
| The most effective thing you can do as a software engineer is
| to contribute to applied machine learning research and
| implementation in bio/chemoinfomatics. Solve protein folding,
| and entire classes of such diseases would be curable. DeepMind
| has given computational biology its ImageNet moment, but there
| is still a large amount of room to improve for production level
| use (beyond merely as a research tool). Truly talented ML
| engineers willing to work on biology are very rare.
| jamespwilliams wrote:
| CJD is almost always a clinical diagnosis. MRIs and lumbar
| punctures give hints, but aren't conclusive.
|
| The only way to diagnose conclusively is via a brain biopsy,
| which apparently isn't worth the risk in most cases. Conclusive
| diagnosis is often done post-mortem.
|
| (my girlfriend works in this area)
| supernova87a wrote:
| From my 2nd-hand info (my comment below about friend-of-family
| stricken with the disease), I understand that the local
| hospital was unequipped to diagnose it fully. They had to send
| a sample to CDC (?) or maybe Mayo as part of autopsy.
|
| If I remember what I read years ago (see "Deadly Feasts" book
| by Richard Rhodes, I recall it being a good read, and part of
| what made me swear off beef) they actually look at the brain
| matter to see if the amyloid plaques are present -- the
| degenerated holes in the brain tissue. I didn't think there was
| some molecular-kind of test for the proteins themselves. But my
| info is from years ago on this.
| bink wrote:
| The article says they took spinal taps from the patients and
| found no evidence of CJD. Presumably that means it can be
| detected that way, but how? And is it close to 100% reliable?
| abeyer wrote:
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5266667/
| supernova87a wrote:
| Well, aside from the government ineptitude-angle of the story (or
| conspiracy to block investigation, whatever you want to call it),
| CJD is definitely a frightening disease. Especially if the
| immediate cause cannot be identified and isolated.
|
| Article doesn't say how the patients are related, in geography,
| time, etc. Did the patients all have surgeries at some point?
| CJD/prions can persist on medical equipment used to treat a CJD
| patient even if sterilized in the usual (non-extreme) ways. Where
| were they located? Not enough info.
|
| A long time ago, like 1997, I gave up eating beef (for a variety
| of reasons, one of which was mad cow being in the news -- I know,
| that's a little extreme on its own, but I had other reasons too).
| That's at least an avoidable factor. But to think that there's
| this disease that is highly lethal and incurable, and potentially
| transmitted by medical instruments, well, ugh. creepy. Like Lasik
| surgery in some medical plaza office, where the tools are lightly
| sterilized after operating on the eyes, one of the umm, most
| highly concentrated prion-carrying body parts of someone who
| carries a prion infection.
|
| I happen to comment on this thread particularly now because a
| distant friend-of-family member just came down with this disease,
| and died within weeks of first symptoms onset. My family (who
| were skeptical, borderline mocking, of my swearing off beef years
| ago) were suddenly interested in talking to me all about it...
| rp1 wrote:
| Is there any evidence that this is CJD or a different pryon
| disease? From the article, it seemed like a few people did have
| CJD, but most came back negative.
|
| Either way, definitely seems like the NB government is trying to
| cover something up.
| aj3 wrote:
| No, association with CJD is simply due to it being the most
| mysterious neurodegenerative disease and the last one to be
| tested (also pryons are hard to detect without knowing which
| protein exactly to examine).
| max-ibel wrote:
| I really wish that we'd be more proactive analyzing those
| afflicted more longitudinally.
|
| I know that for maybe $400-$500, you can do a high-res brain MRI
| and track size of brain regions, thickness of cortical layers
| etc.
|
| Brainkey.ai is such a company (I'm affiliated), and I find it
| amazing what you can do now and what you can likely do in the
| future.
|
| If nothing else, having a baseline scan would be super handy if
| anything causes cause for alarm later.
| aj3 wrote:
| Having more options to share medical records would be helpful
| as well (with patients consent obviously). Legacy attitude
| stating that all medical information should be kept super
| private is irrational and to me looks like a cargo cult.
| adventured wrote:
| The article mentions 65 CJD deaths per year in Canada. I was
| surprised it was that high, I had thought CJD was far more rare
| than that (an order of magnitude more rare). It more or less
| matches the present US figures however, at the typical 10-1 ratio
| between the two nations. So the near doubling of CJD deaths in
| the US from 2006 to 2019 (from 290 to 560), would that likely
| imply a lot of CJD infections ocurred many decades ago
| (1970s-1990s?) and they're now manifesting in older persons
| (resulting of course in a rapid death)?
| iammisc wrote:
| Most CJD is not caused by ingesting meat, but rather are
| spontaneous. You can develop CJD spontaneously.
| aj3 wrote:
| Sporadic CJD is diagnosis of exclusion. That it happens
| spontaneously is a hypothesis, there might be root cause(s)
| that we simply don't know yet.
| max-ibel wrote:
| citation ?
| geenew wrote:
| The article we're discussing mentions that.
| iammisc wrote:
| https://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_dis
| e...
|
| Classification section, quote:
|
| Sporadic (sCJD), caused by the spontaneous misfolding of
| prion-protein in an individual.[20] This accounts for 85%
| of cases of CJD.[56] Familial (fCJD), caused by an
| inherited mutation in the prion-protein gene.[55] This
| accounts for the majority of the other 15% of cases of
| CJD.[56] Acquired CJD, caused by contamination with tissue
| from an infected person, usually as the result of a medical
| procedure (iatrogenic CJD). Medical procedures that are
| associated with the spread of this form of CJD include
| blood transfusion from the infected person, use of human-
| derived pituitary growth hormones, gonadotropin hormone
| therapy, and corneal and meningeal transplants.[55][56][57]
| Variant Creutzfeldt-Jakob disease (vCJD) is a type of
| acquired CJD potentially acquired from bovine spongiform
| encephalopathy or caused by consuming food contaminated
| with prions.[55][58]
| [deleted]
| LinuxBender wrote:
| If governments are locked out, you can send your own samples to
| labs. [1] Some labs can test for even more chemicals and heavy
| metals, it just gets more expensive.
|
| [1] - https://watercheck.com/products/water-check-with-
| pesticide-o...
| roywiggins wrote:
| The article notes that at least one possible culprit just can't
| be tested for at private labs:
|
| (also, knowing _what to test for_ is going to be tricky and
| probably require expert help, especially with a brand new
| disease. It 's not like lead poisoning)
|
| "BMAA can also accumulate in seafood and develops in the kind
| of blue-green algae blooms that are increasingly common in New
| Brunswick's lakes and rivers. (It's been tentatively linked to
| elevated levels of ALS in the United States.) Murch's lab at
| UBC's Okanagan campus is the only one in the country capable of
| testing for BMAA in human tissues. Initial discussion with the
| PHAC fell silent, however, after New Brunswick asked its
| federal counterparts to stand aside."
| LinuxBender wrote:
| I would leave that on the table as one possible option when
| all other options are completely exhausted. That would not
| stop me from sending off samples to labs for extensive
| testing however, especially if a family member or friend was
| affected by this.
|
| That algae can also leave traces in the liver. [1]
|
| [1] - https://oehha.ca.gov/media/downloads/ecotoxicology/docu
| ment/....
| inter_netuser wrote:
| You are not limited to one country, and can sent samples
| anywhere.
|
| You may not like hearing this, but Canada is quite frankly
| underdeveloped when it comes to medicine overall, and
| diagnostic equipment specifically. I've been told by
| physicians who practised in some Canadian health systems that
| healthcare in Canada is quite cash strapped.
|
| 2 years wait for hip surgery, 6 months wait for MRI. This is
| apparently with close to 50% of government budgets dedicated
| to healthcare. Yet they have fundraisers for MRI equipment in
| hospitals, google it.
| antonvs wrote:
| How is that relevant? You think amateurs are going to solve
| this mystery disease where top experts have failed so far?
| aprdm wrote:
| Everyone was an amateur once, an amateur with determination
| can certainly see things from angles a top expert doesn't.
| There's plenty of movies telling stories like that, like a
| father who discovers a new treatment for their kid studying
| medicine by himself. Never discount a curious and determined
| amateur.
| gdsdfe wrote:
| You know movies are made up, right?
| gdsdfe wrote:
| lol ... I guess I'm being down voted by people getting
| medical advice from podcasts?
| gruez wrote:
| >There's plenty of movies telling stories like that, like a
| father who discovers a new treatment for their kid studying
| medicine by himself.
|
| I can't tell whether this is sarcasm, or you're actually
| citing movies as how real life works.
| [deleted]
| newsbinator wrote:
| https://en.wikipedia.org/wiki/Lorenzo%27s_Oil
|
| > Subsequent research with Lorenzo's oil has not clearly
| proven its long-term effectiveness in treating ALD after
| its onset.[8] The actual subject of the film, Lorenzo
| Odone, died of pneumonia in May 2008 at the age of 30,
| having lived two decades longer than originally predicted
| by doctors
| adventured wrote:
| Another interesting one:
|
| Awakenings (a decent movie starring Robin Williams and
| Robert DeNiro)
|
| https://www.imdb.com/title/tt0099077/
|
| https://en.wikipedia.org/wiki/Awakenings
| EamonnMR wrote:
| Sacks was a doctor, not an amateur. The book is less
| narrative and more clinical case studies.
| gruez wrote:
| I'm not saying that movies are never right, just that
| it's baffling someone would cite movies rather than the
| source itself. It's like citing conspiracy theorists.
| Yeah, sometimes they're actually right, but you're doing
| a massive disservice to your argument by citing them
| compared to a more reputable source.
| LinuxBender wrote:
| _> You think amateurs are going to solve this mystery disease
| where top experts have failed so far?_
|
| Maybe. I have learned to be skeptical of local government
| testing. Sometimes people want to avoid finding an answer
| because the answer could result in a very expensive and
| litigious fallout.
| antonvs wrote:
| > Do people just trust that local officials have tested for
| every type of metal and chemical?
|
| That's kind of the point of the article. Local government
| has shut down a broader investigation by expert outsiders.
|
| The solution to that situation is extremely unlikely to
| involve untrained individuals doing rare disease research
| on their own.
| LinuxBender wrote:
| _Local government has shut down a broader investigation
| by expert outsiders._
|
| That isn't even possible in the most totalitarian of
| societies. Nothing is stopping locals from grabbing water
| and soil samples and sending it off to labs. This is
| quite common practice for people will wells and farms.
| The only difference is bothering to pay for the more
| expensive tests. They could do GoFundMe fund raisers to
| get the money. Maybe they find nothing exciting and can
| at least check that off the list of things to do. If they
| do find something, perhaps publishing the results in the
| local media would force the local government to step
| aside.
|
| I will take this a step further and suggest that
| individual citizens can do tests that governments can not
| even do. Just as one example if one was so inclined, they
| could get a doctor to extract liver tissue samples from
| volunteers and get that analyzed for toxins. Most toxins
| will result in metabolites in the liver as it will try to
| neutralize anything toxic you consume. This test is super
| painful though, its a big needle. Nowhere near as painful
| as a chest tube. Testing could be done on those recently
| passed away as part of the autopsy obviously with the
| families permission. Why the liver? Because toxins in the
| serum will only remain for a short period of time. The
| liver will do whatever it can to filter those toxins.
| There is often evidence that remains in the liver for a
| very long time.
|
| If that is too painful another option would be for the
| locals to pool money and hire private investigators to
| research all the people that were ever involved in the
| testing to determine if there is collusion, conflicts of
| interest with local companies or maybe even evidence of a
| cover-up. Maybe they find nothing.
| SECProto wrote:
| > That isn't even possible in the most totalitarian of
| societies. Nothing is stopping locals from grabbing water
| and soil samples and sending it off to labs.
|
| Select quotes from the article:
|
| > As with most matters related to health, outbreak
| response in Canada falls under provincial jurisdiction,
| but in this case, New Brunswick asked the PHAC for help.
| Federal colleagues began assembling a nationwide working
| group, which eventually numbered about two dozen. [...]
| Then, on June 3, New Brunswick abruptly changed tack. The
| province told the emerging national working group to
| stand down.
|
| The issue is that health is a provincial matter, and
| without their cooperation you aren't going to make much
| progress. All the testing, patient records, autopsy
| reports, etc etc - would all be protected health
| information that could only be released with the
| cooperation of the province.
| LinuxBender wrote:
| I am not familiar with NB law but without relying
| entirely on the article I am going to assume that the
| surviving executors with power of attorney can order the
| records. Their attorneys should be able to provide
| options and hopefully the families don't just rely on the
| media for advise.
|
| Should water and soil samples start coming back positive
| those with power of attorney should also be able to order
| exhumation of the bodies assuming this would be relevant
| and assuming people were not cremated. If the suspect was
| heavy metals they would still be present. I am not sure
| if the metals would be detectable in cremated remains.
|
| Those impacted that are still alive if any could of
| course release their own records on their own accord.
| They could also have various organ tissues tested.
| hammock wrote:
| The notion that top experts were on the case, then suddenly
| locked out, points to a theory that they DID solve the
| mystery and don't want the answer made public.
| Hypergraphe wrote:
| Probably
| newsbinator wrote:
| > You think amateurs are going to solve this mystery
|
| As a member of a website called "Hacker News", I say: maybe!
| bpodgursky wrote:
| I think you may have been asleep for a couple years...
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