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Sad that this is getting down voted. Science is wonderful, and it's behind many incredible breakthroughs in modern technology, obviously. But in my book, logic

Sad that this is getting down voted. Science is wonderful, and it's behind many incredible breakthroughs in modern technology, obviously. But in my book, logic beats science every time. You can point to all the studies in the world, but if they conflict with my own literal experience, I am going to be at the very least skeptical of the science.

DoreenMichele 8y ago
Thank you. I wish people would actually engage me on the logic rather than acting like I must be crazy and making things up while they pretend such assumptions aren't some form of prejudice. I'm starved for actual meaty engagement on such subjects. Like explain to me why you think I'm wrong instead of telling me I hallucinated my entire life and if I really do have CF and I really am getting well, it's 18 years of placebo effect and I couldn't possibly know what I'm talking about. Fear me. I can apparently hallucinate my body into better health. Up next: Darth Vader Force chokehold, clearly.
- hkeide 8y ago
  You’re very articulate and it all makes sense. Science is about building better models and explanations of things which can be observed. It’s not about simple hypothesis testing. Read The Beginning of Infinity by David Deutsch if you’re interested in this subject. Please ignore the anonymous HN dilettantes.
- darkerside 8y ago
  Reading other replies to your original post is alternately enlightening and incredibly frustrating. So much armchair crap from people who have clearly never encountered anything outside of established science and so refuse to believe that anything outside of established science can exist! As if established science were somehow virgin birthed into existence, and not built upon centuries of painstaking observation and analysis. Especially considering your form of CF is atypical, you'd think researchers would be tremendously interested in identifying a possibly conflated disease that presents with the same symptoms.
  - DoreenMichele 8y ago
    It's definitely very frustrating. In the good news column, this discussion is the most meaty engagement I've ever gotten and I'm generally pleased with this unexpected turn of events. I think the most charitable reading I can give is that when I was much sicker, I tended to do a poor job of trying to present my case and "you never get a second chance to make a first impression." Hopefully the silver lining is that some people will recognize how much my writing has improved over time and will see my past typo-filled and often not very coherent posts as compared to later ones as evidence that my claim that I was very sick at one time and I've gotten healthier holds water and makes sense, even without ever meeting me in person.
asdfasgasdgasdg 8y ago
Because this smacks of the same logic that people use to deduce things like "homeopathy works." Develop a hypothesis. Find a few people on the internet who support it. Badah bing badah boom you are now a quack. The big problem with the GP's "logic" here is that, at least according to cursory googling (the best kind!), plenty of women with CF do report having thick vaginal mucous. Any doctor will tell you that a given disease can present many different ways. It's a terrible idea to reason from your own personal experience with a disease to how the disease works in general.
- DoreenMichele 8y ago
  Except you have it backwards. I didn't develop a hypothesis and look for a few internet people to support it. Instead, I did what worked and then tried to understand why it worked. Thick mucus tends to be poor quality mucus. Mucus is supposed to be viscous. Women self reporting on vaginal mucus also fail to distinguish vaginal "goopiness" from mucus. This is why i paid attention to anecdotal evidence that lack of vaginal mucus was ruining their sex lives. This was pretty uniformly reported. It's possible there is some sex worker or fetish club member out there with CF who has sex with multiple men every day and is just not admitting it for done reason. But I spent several years on multiple CF lists and the consesus was CF causes vaginal dryness and this harms women's sex lives. Your casual dismissal also fails to explain how an excess of mucus causes a compromised immune system. It seems obvious on the face of it that a lack of healthy mucus would be a problem because an important element of our immune system would basically be missing. Mucus is a gating system. It's like saying "We have too many illegal immigrants in this country because Trump not only built his wall, he made many layers of fencing to go with it, which makes it easier than ever for them to get through. It was better when there was no wall. That did a better job of keeping them out." (Not intended as political commentary. Hopefully just a readily relatable example of logic fail -- more fencing should not be worse for keeping out unwanted invaders.)
  - asdfasgasdgasdg 8y ago
    I'm sorry, but no matter what you say, your experience on forums is not going to move my priors very much. Plenty of people hear plenty of things on forums. It's not an efficient way of obtaining reliable scientific knowledge. Every other person has their pet cause where they know better than doctors because they did X or Y and it helped, and they found other people on the internet who agreed with them. It's a common story, and 99.9% of the time it's incorrect. People don't engage with you on this because it's pointless. You're not going to convince anyone who isn't predisposed to accepting your story, the same way a religious person who claims a divine experience isn't going to convince anyone who doesn't already want such a story to be true. In the same way, me telling Paul that he was probably hallucinating on the road to Damascus because he was dehydrated is not going to make him stop preaching the word of god. You don't have good evidence to present, besides hearsay about other internet people's anecdotal experiences. Read that last sentence. That type of thing is about three or four degrees removed from solid evidence. Surely you can understand how unconvincing this is going to be to a disinterested third party?

DoreenMichele 8y ago

Thank you. I wish people would actually engage me on the logic rather than acting like I must be crazy and making things up while they pretend such assumptions aren't some form of prejudice. I'm starved for actual meaty engagement on such subjects. Like explain to me why you think I'm wrong instead of telling me I hallucinated my entire life and if I really do have CF and I really am getting well, it's 18 years of placebo effect and I couldn't possibly know what I'm talking about. Fear me. I can apparently hallucinate my body into better health. Up next: Darth Vader Force chokehold, clearly.

hkeide 8y ago
You’re very articulate and it all makes sense. Science is about building better models and explanations of things which can be observed. It’s not about simple hypothesis testing. Read The Beginning of Infinity by David Deutsch if you’re interested in this subject. Please ignore the anonymous HN dilettantes.
darkerside 8y ago
Reading other replies to your original post is alternately enlightening and incredibly frustrating. So much armchair crap from people who have clearly never encountered anything outside of established science and so refuse to believe that anything outside of established science can exist! As if established science were somehow virgin birthed into existence, and not built upon centuries of painstaking observation and analysis. Especially considering your form of CF is atypical, you'd think researchers would be tremendously interested in identifying a possibly conflated disease that presents with the same symptoms.
- DoreenMichele 8y ago
  It's definitely very frustrating. In the good news column, this discussion is the most meaty engagement I've ever gotten and I'm generally pleased with this unexpected turn of events. I think the most charitable reading I can give is that when I was much sicker, I tended to do a poor job of trying to present my case and "you never get a second chance to make a first impression." Hopefully the silver lining is that some people will recognize how much my writing has improved over time and will see my past typo-filled and often not very coherent posts as compared to later ones as evidence that my claim that I was very sick at one time and I've gotten healthier holds water and makes sense, even without ever meeting me in person.

asdfasgasdgasdg 8y ago

Because this smacks of the same logic that people use to deduce things like "homeopathy works." Develop a hypothesis. Find a few people on the internet who support it. Badah bing badah boom you are now a quack. The big problem with the GP's "logic" here is that, at least according to cursory googling (the best kind!), plenty of women with CF do report having thick vaginal mucous. Any doctor will tell you that a given disease can present many different ways. It's a terrible idea to reason from your own personal experience with a disease to how the disease works in general.

DoreenMichele 8y ago
Except you have it backwards. I didn't develop a hypothesis and look for a few internet people to support it. Instead, I did what worked and then tried to understand why it worked. Thick mucus tends to be poor quality mucus. Mucus is supposed to be viscous. Women self reporting on vaginal mucus also fail to distinguish vaginal "goopiness" from mucus. This is why i paid attention to anecdotal evidence that lack of vaginal mucus was ruining their sex lives. This was pretty uniformly reported. It's possible there is some sex worker or fetish club member out there with CF who has sex with multiple men every day and is just not admitting it for done reason. But I spent several years on multiple CF lists and the consesus was CF causes vaginal dryness and this harms women's sex lives. Your casual dismissal also fails to explain how an excess of mucus causes a compromised immune system. It seems obvious on the face of it that a lack of healthy mucus would be a problem because an important element of our immune system would basically be missing. Mucus is a gating system. It's like saying "We have too many illegal immigrants in this country because Trump not only built his wall, he made many layers of fencing to go with it, which makes it easier than ever for them to get through. It was better when there was no wall. That did a better job of keeping them out." (Not intended as political commentary. Hopefully just a readily relatable example of logic fail -- more fencing should not be worse for keeping out unwanted invaders.)
- asdfasgasdgasdg 8y ago
  I'm sorry, but no matter what you say, your experience on forums is not going to move my priors very much. Plenty of people hear plenty of things on forums. It's not an efficient way of obtaining reliable scientific knowledge. Every other person has their pet cause where they know better than doctors because they did X or Y and it helped, and they found other people on the internet who agreed with them. It's a common story, and 99.9% of the time it's incorrect. People don't engage with you on this because it's pointless. You're not going to convince anyone who isn't predisposed to accepting your story, the same way a religious person who claims a divine experience isn't going to convince anyone who doesn't already want such a story to be true. In the same way, me telling Paul that he was probably hallucinating on the road to Damascus because he was dehydrated is not going to make him stop preaching the word of god. You don't have good evidence to present, besides hearsay about other internet people's anecdotal experiences. Read that last sentence. That type of thing is about three or four degrees removed from solid evidence. Surely you can understand how unconvincing this is going to be to a disinterested third party?