4 ms·

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...

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...