9 ms·

> Not to dismiss your valid concern, the problem is that when doctor's kill someone, the death gets blamed on a disease or on the patient not taking the medicat

> Not to dismiss your valid concern, the problem is that when doctor's kill someone, the death gets blamed on a disease or on the patient not taking the medication correctly, etc. No. We are not in the time of Benjamin Rush. You have almost certainly read the Institute of Medicine's report on medical error. We know that we commit error and that we kill patients. We admit this. We need to do better and we seek evidence for how we can do so. We welcome outside help, and there is good money to be made by those who would participate. Anyway, surely you know what we call alternative medicine that is supported by evidence: "medicine".

Mz 14y ago
I know "medicine" happily sentenced me to death. I declined its offer. I lived. I also know it is nearly impossible to talk to people about that. My views and experiences are dismissed wholesale before I even open my mouth.
- lutusp 14y ago
  > My views and experiences are dismissed wholesale before I even open my mouth. Try describing your experience scientifically, rather than emotionally (as you are doing). See how that works. You might learn something you don't already know, as might your listeners. The chances are very high that your story is one of coincidence rather then repeatable effect, but until you actually think about it analytically, you will never know.
  - ColinWright 14y ago
    I'm pretty sure you're talking to someone who has tried pretty much every possible avenue to get people to listen to her, failed, and is now rather bitter about how she is treated over the whole episode. Mz can speak for herself, but I suspect your advice is well-meant, but badly misplaced.
    - lutusp 14y ago
      > I suspect your advice is well-meant, but badly misplaced. The advice to post a scientific description instead of an emotional one is never misplaced.
    - carbocation 14y ago
      His advice is great. She might not take it, but lutusp's audience is the entire internet.
  - Mz 14y ago
    I think about it analytically all the time. And I know it to be repeatable. Twelve years of steady improvement would be one helluva "coincidence". I spent many years trying to learn to argue "correctly" in my martiage -- unemotionally, citing my sources, etc. I can do that. But it matters not how well I do it, I am still dismissed. You are dismissing me without knowing my story, and conveniently blaming me. I imagine you will never see my point, no matter how I present it. I am working on trying to find the right presentation. But your approach is largely antithetical to mine and mine got me well. Finding a meeting ground is challenging, and most people make no attempt to meet me halfway. Thank you for replying though.
    - carbocation 14y ago
      Do you happen to have a summary of your story on the web somewhere? Not that you should feel obligated to share it, but if you have shared it before I would like to try to understand.
      - Mz 14y ago
        There isn't really a summary of my story anywhere but there is a website. I commented on that elsewhere earlier today: http://news.ycombinator.com/item?id=4895256 http://news.ycombinator.com/item?id=4895256 There isn't a summary because I get accused of having Munchausen Syndrome -- a sick need for attention -- rather than Cystic Fibrosis. It is quite dangerous to try to tell my story. It routinely results in public attacks, and moderators typically side with my attackers. You are welcome to email me if you wish to discuss it privately.
        lutusp 14y ago
        > There isn't a summary because I get accused of having Munchausen Syndrome ... And it has occurred to you that you may have Munchausen Syndrome, yes? > It is quite dangerous to try to tell my story. Not if you tell the truth. "Truth never damages a cause that is just" -- Gandhi > It routinely results in public attacks, and moderators typically side with my attackers. But with no justification or reason at all. Right? It's obvious that you're playing this out for all it is worth, without providing any real information, portraying yourself as the innocent victim of persecution, but in a way calculated to avoid providing any actual data, or anything that might lead to a resolution. I wonder if you realize how transparent you are, to an objective observer?
  - juniper5 14y ago
    > Try describing your experience scientifically, rather than emotionally (as you are doing). See how that works. It works terribly, which is probably why she tends to be skittish on that front. If/when you do get a straight answer, she's going to tell you she cured CF with sea salt (yes, that's the big mystery).
- polyfractal 14y ago
  I choose to ignore the idea that asteroids can destroy our planet by fatal, apocalyptic impact. The earth has not yet been hit by an asteroid. QED, asteroid impacts are a farce. Correlation != causation. I'm happy you have lived through your medical problems. But you are a data point of n=1, and I'm sure there are plenty of people who have ignored solid medical advice and died because of it. Lastly, "medicine" doesn't happily sentence anyone to death. Doctors and nurses are people too. People who got into their career to help other people. Do you think they become a doctor just to write death pronouncements?
  - Mz 14y ago
    First, I am not a single data point. My oldest son has the same diagnosis, my youngest son is a carrier and by living with me they were both exposed to the same germs. All three of us have gotten healthier together. Second, there are a handful of people who have listened to me and seen significant improvements. Most of them are unwilling to speak up publically. They just want to get better. They don't want to be subjected to the personal attacks I routinely endure. Third, everyone seeing better results than doctors predict for my deadly condition pretty much follow some of the same general principles I follow in some form or other, including looking to diet as a major means to address their health issues. Last, doctor's routinely dismiss people with CF and write them off. It is a very deadly condition. Most doctor's make no real effort to get soneone with CF healthier. If you have spent no time in the CF community, let me suggest you have no idea what you are talking about.
    - lutusp 14y ago
      > First, I am not a single data point. You most certainly are. Cystic Fibrosis is not a communicable disease caused by germs, it is a genetically linked ailment. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001167/ http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001167/ A quote: "Cystic fibrosis is a disease passed down through families that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. It is a life-threatening disorder." > My oldest son has the same diagnosis, my youngest son is a carrier and by living with me they were both exposed to the same germs. They weren't exposed to the same "germs", they were both exposed to you. This is Munchausen by Proxy. > ... doctor's routinely dismiss people with CF and write them off. False, absolutely false. You were dismissed, not because you have CF, but because you're mentally ill. > ... let me suggest you have no idea what you are talking about. Which of us tried to claim that CF is transmitted by germs?
- ColinWright 14y ago
  I'm absolutely certain that "modern medicine" doesn't have all the answers, and is woefully incomplete. I'm absolutely certain that there are things currently considered as "alternative medicine" that will turn out to be valid when practised correctly, and on suitable patients with suitable conditions. I'm absolutely certain that there are people for whom the prescribed treatment from "modern medicine" was, in fact, wrong. I'm also absolutely certain that the vast majority of "alternative medicine" is not, in fact, better than "modern medicine." Exceptions will exist, and true scientists would use them as stepping stones to better knowledge, better practice, and better medicine. The fact that your experience indicates otherwise is a clear indication that things not only could be better, but should be better. The true failure is not that modern medicine was wrong and that you appear to have been saved by "alternative medicine", but that your success is not taken seriously, and is basically ignored, by those in whom we ultimately place our trust to find and implement cures. That doesn't stop it being true that there are people who seek "alternative treatments" when they would be better off going with "modern medicine", and all evidence suggests that they are the vast majority of cases.
  - Mz 14y ago
    There are really huge problems with the entire current system. That is why so many people seek alternatives. When I turned to "alternative treatments", doctors were calling me crazy and denying me treatment. Had they offered me real treatment, I would have gladly taken it. This is not a journey I desired to make. Not at all. But the problem with this being posted here is that the entire discussion will revolve around dismissing alternative medicine and not on what is wrong with the bigger picture that I and other people would consciously choose to take our chances on unproven methods rather than accept what little was offered us. I was in constant excruciating pain. If my own experiments had resulted in sudden death, I felt that was better than the slow torturous death modern medicine offers people like me. I know you are a mathematician. I imagine this piece hits a nerve for you. But bashing alternatives doesn't fix the real problem and will help close off avenues of escape from a larger system which is not working. That larger failure includes conflating "health care" and "medicine" when they are not the same thing but it is hardly limited to that issue. Thank you for replying.

Mz 14y ago

I know "medicine" happily sentenced me to death. I declined its offer. I lived. I also know it is nearly impossible to talk to people about that. My views and experiences are dismissed wholesale before I even open my mouth.

lutusp 14y ago
> My views and experiences are dismissed wholesale before I even open my mouth. Try describing your experience scientifically, rather than emotionally (as you are doing). See how that works. You might learn something you don't already know, as might your listeners. The chances are very high that your story is one of coincidence rather then repeatable effect, but until you actually think about it analytically, you will never know.
- ColinWright 14y ago
  I'm pretty sure you're talking to someone who has tried pretty much every possible avenue to get people to listen to her, failed, and is now rather bitter about how she is treated over the whole episode. Mz can speak for herself, but I suspect your advice is well-meant, but badly misplaced.
  - lutusp 14y ago
    > I suspect your advice is well-meant, but badly misplaced. The advice to post a scientific description instead of an emotional one is never misplaced.
  - carbocation 14y ago
    His advice is great. She might not take it, but lutusp's audience is the entire internet.
- Mz 14y ago
  I think about it analytically all the time. And I know it to be repeatable. Twelve years of steady improvement would be one helluva "coincidence". I spent many years trying to learn to argue "correctly" in my martiage -- unemotionally, citing my sources, etc. I can do that. But it matters not how well I do it, I am still dismissed. You are dismissing me without knowing my story, and conveniently blaming me. I imagine you will never see my point, no matter how I present it. I am working on trying to find the right presentation. But your approach is largely antithetical to mine and mine got me well. Finding a meeting ground is challenging, and most people make no attempt to meet me halfway. Thank you for replying though.
  - carbocation 14y ago
    Do you happen to have a summary of your story on the web somewhere? Not that you should feel obligated to share it, but if you have shared it before I would like to try to understand.
    - Mz 14y ago
      There isn't really a summary of my story anywhere but there is a website. I commented on that elsewhere earlier today: http://news.ycombinator.com/item?id=4895256 http://news.ycombinator.com/item?id=4895256 There isn't a summary because I get accused of having Munchausen Syndrome -- a sick need for attention -- rather than Cystic Fibrosis. It is quite dangerous to try to tell my story. It routinely results in public attacks, and moderators typically side with my attackers. You are welcome to email me if you wish to discuss it privately.
      - lutusp 14y ago
        > There isn't a summary because I get accused of having Munchausen Syndrome ... And it has occurred to you that you may have Munchausen Syndrome, yes? > It is quite dangerous to try to tell my story. Not if you tell the truth. "Truth never damages a cause that is just" -- Gandhi > It routinely results in public attacks, and moderators typically side with my attackers. But with no justification or reason at all. Right? It's obvious that you're playing this out for all it is worth, without providing any real information, portraying yourself as the innocent victim of persecution, but in a way calculated to avoid providing any actual data, or anything that might lead to a resolution. I wonder if you realize how transparent you are, to an objective observer?
- juniper5 14y ago
  > Try describing your experience scientifically, rather than emotionally (as you are doing). See how that works. It works terribly, which is probably why she tends to be skittish on that front. If/when you do get a straight answer, she's going to tell you she cured CF with sea salt (yes, that's the big mystery).
polyfractal 14y ago
I choose to ignore the idea that asteroids can destroy our planet by fatal, apocalyptic impact. The earth has not yet been hit by an asteroid. QED, asteroid impacts are a farce. Correlation != causation. I'm happy you have lived through your medical problems. But you are a data point of n=1, and I'm sure there are plenty of people who have ignored solid medical advice and died because of it. Lastly, "medicine" doesn't happily sentence anyone to death. Doctors and nurses are people too. People who got into their career to help other people. Do you think they become a doctor just to write death pronouncements?
- Mz 14y ago
  First, I am not a single data point. My oldest son has the same diagnosis, my youngest son is a carrier and by living with me they were both exposed to the same germs. All three of us have gotten healthier together. Second, there are a handful of people who have listened to me and seen significant improvements. Most of them are unwilling to speak up publically. They just want to get better. They don't want to be subjected to the personal attacks I routinely endure. Third, everyone seeing better results than doctors predict for my deadly condition pretty much follow some of the same general principles I follow in some form or other, including looking to diet as a major means to address their health issues. Last, doctor's routinely dismiss people with CF and write them off. It is a very deadly condition. Most doctor's make no real effort to get soneone with CF healthier. If you have spent no time in the CF community, let me suggest you have no idea what you are talking about.
  - lutusp 14y ago
    > First, I am not a single data point. You most certainly are. Cystic Fibrosis is not a communicable disease caused by germs, it is a genetically linked ailment. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001167/ http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001167/ A quote: "Cystic fibrosis is a disease passed down through families that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. It is a life-threatening disorder." > My oldest son has the same diagnosis, my youngest son is a carrier and by living with me they were both exposed to the same germs. They weren't exposed to the same "germs", they were both exposed to you. This is Munchausen by Proxy. > ... doctor's routinely dismiss people with CF and write them off. False, absolutely false. You were dismissed, not because you have CF, but because you're mentally ill. > ... let me suggest you have no idea what you are talking about. Which of us tried to claim that CF is transmitted by germs?
ColinWright 14y ago
I'm absolutely certain that "modern medicine" doesn't have all the answers, and is woefully incomplete. I'm absolutely certain that there are things currently considered as "alternative medicine" that will turn out to be valid when practised correctly, and on suitable patients with suitable conditions. I'm absolutely certain that there are people for whom the prescribed treatment from "modern medicine" was, in fact, wrong. I'm also absolutely certain that the vast majority of "alternative medicine" is not, in fact, better than "modern medicine." Exceptions will exist, and true scientists would use them as stepping stones to better knowledge, better practice, and better medicine. The fact that your experience indicates otherwise is a clear indication that things not only could be better, but should be better. The true failure is not that modern medicine was wrong and that you appear to have been saved by "alternative medicine", but that your success is not taken seriously, and is basically ignored, by those in whom we ultimately place our trust to find and implement cures. That doesn't stop it being true that there are people who seek "alternative treatments" when they would be better off going with "modern medicine", and all evidence suggests that they are the vast majority of cases.
- Mz 14y ago
  There are really huge problems with the entire current system. That is why so many people seek alternatives. When I turned to "alternative treatments", doctors were calling me crazy and denying me treatment. Had they offered me real treatment, I would have gladly taken it. This is not a journey I desired to make. Not at all. But the problem with this being posted here is that the entire discussion will revolve around dismissing alternative medicine and not on what is wrong with the bigger picture that I and other people would consciously choose to take our chances on unproven methods rather than accept what little was offered us. I was in constant excruciating pain. If my own experiments had resulted in sudden death, I felt that was better than the slow torturous death modern medicine offers people like me. I know you are a mathematician. I imagine this piece hits a nerve for you. But bashing alternatives doesn't fix the real problem and will help close off avenues of escape from a larger system which is not working. That larger failure includes conflating "health care" and "medicine" when they are not the same thing but it is hardly limited to that issue. Thank you for replying.