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by dokein
3083 days ago
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Our current mental model (which is a bit more complicated than what is endorsed) is built upon evidence. The genetic mutation leading to CF was discovered, and the treatment (based on investigating this, rather than trying compounds at random) has extended lives. Before clinical trials, doctors gave advice based on anecdotes (i.e. "experience"). As a whole we seemed to do no better than random chance, but we made sure to take credit for patients who naturally recovered. Your experiences are important and 100% relevant to yourself, and nobody can ever devalue that. And it's also true that our understanding of the human body is extremely limited. But it's not clear to me that the magnitude of your personal suffering leads to generalized knowledge or a better mental model. |
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I have seen at least two discussions online about how vaginal dryness routinely ruins the sex lives of women with CF. I have yet to meet a woman with CF who brags that CF means she can handle 10 men a night at her regular orgies. Yet women with CF also produce a lot of goopy vaginal drainage, no doubt from infection. But it isn't mucus. If it were, vaginal dryness should not ruin their sex life.
I posit that people with CF are coughing up phlegm which is drainage from infection. Helping them produce healthy mucus can eventually put a stop to that.
My oldest son has the same diagnosis. I know other people with CF who have taken some pointers from me. It isn't accurate to say it is merely the anecdotal stories from a single person.
I appreciate you commenting. But our current mental models are inadequate and it is incredibly tiresome to be told for 17 years that I know nothing, my track record of success is just luck or something, etc.
Mental models tend to change only when the old guard dies. This is historical fact.
We probably should not waste anymore of each other's time. The odds are poor that it will be constructive.