5 ms·

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 expens

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-option https://watercheck.com/products/water-check-with-pesticide-o...

antonvs 5y ago
How is that relevant? You think amateurs are going to solve this mystery disease where top experts have failed so far?
- aprdm 5y ago
  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.
  - gruez 5y ago
    >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.
    - newsbinator 5y ago
      https://en.wikipedia.org/wiki/Lorenzo%27s_Oil 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 5y ago
        Another interesting one: Awakenings (a decent movie starring Robin Williams and Robert DeNiro) https://www.imdb.com/title/tt0099077/ https://www.imdb.com/title/tt0099077/ https://en.wikipedia.org/wiki/Awakenings https://en.wikipedia.org/wiki/Awakenings
        EamonnMR 5y ago
        Sacks was a doctor, not an amateur. The book is less narrative and more clinical case studies.
      - gruez 5y ago
        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.
        aprdm 5y ago
        potatoes potatos
    - deleted 5y ago
      [deleted]
  - gdsdfe 5y ago
    You know movies are made up, right?
    - gdsdfe 5y ago
      lol ... I guess I'm being down voted by people getting medical advice from podcasts?
- LinuxBender 5y ago
  > 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 5y ago
    > 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 5y ago
      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.
- newsbinator 5y ago
  > You think amateurs are going to solve this mystery As a member of a website called "Hacker News", I say: maybe!
- hammock 5y ago
  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 5y ago
    Probably
- bpodgursky 5y ago
  I think you may have been asleep for a couple years...
roywiggins 5y ago
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 5y ago
  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/document/microcystin031209.pdf#:~:text=The%20blue-green%20algae%20Microcystis%20aeruginosa%20can%20produce%20a,organs.%20Microcystins%20also%20act%20as%20a%20tumor%20promoter https://oehha.ca.gov/media/downloads/ecotoxicology/document/....
- inter_netuser 5y ago
  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.
  - klyrs 5y ago
    One of the challenges that Canadian healthcare faces is a political environment not unlike the US. We got "universal" healthcare, but right-wing politicians gut it at every opportunity. As a result, their constituents hate the system, and don't want to fund it because it's broken. Doctors and nurses can get better pay in the US, so it's especially hard to retain them. I know some nurses in BC, and the union doesn't really work for them, it's largely concerned with self-preservation. The whole thing is a hot mess.

antonvs 5y ago

How is that relevant? You think amateurs are going to solve this mystery disease where top experts have failed so far?

aprdm 5y ago
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.
- gruez 5y ago
  >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.
  - newsbinator 5y ago
    https://en.wikipedia.org/wiki/Lorenzo%27s_Oil 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 5y ago
      Another interesting one: Awakenings (a decent movie starring Robin Williams and Robert DeNiro) https://www.imdb.com/title/tt0099077/ https://www.imdb.com/title/tt0099077/ https://en.wikipedia.org/wiki/Awakenings https://en.wikipedia.org/wiki/Awakenings
      - EamonnMR 5y ago
        Sacks was a doctor, not an amateur. The book is less narrative and more clinical case studies.
    - gruez 5y ago
      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.
      - aprdm 5y ago
        potatoes potatos
  - deleted 5y ago
    [deleted]
- gdsdfe 5y ago
  You know movies are made up, right?
  - gdsdfe 5y ago
    lol ... I guess I'm being down voted by people getting medical advice from podcasts?
LinuxBender 5y ago
> 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 5y ago
  > 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 5y ago
    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.
newsbinator 5y ago
> You think amateurs are going to solve this mystery As a member of a website called "Hacker News", I say: maybe!
hammock 5y ago
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 5y ago
  Probably
bpodgursky 5y ago
I think you may have been asleep for a couple years...

roywiggins 5y ago

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 5y ago
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/document/microcystin031209.pdf#:~:text=The%20blue-green%20algae%20Microcystis%20aeruginosa%20can%20produce%20a,organs.%20Microcystins%20also%20act%20as%20a%20tumor%20promoter https://oehha.ca.gov/media/downloads/ecotoxicology/document/....
inter_netuser 5y ago
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.
- klyrs 5y ago
  One of the challenges that Canadian healthcare faces is a political environment not unlike the US. We got "universal" healthcare, but right-wing politicians gut it at every opportunity. As a result, their constituents hate the system, and don't want to fund it because it's broken. Doctors and nurses can get better pay in the US, so it's especially hard to retain them. I know some nurses in BC, and the union doesn't really work for them, it's largely concerned with self-preservation. The whole thing is a hot mess.