Earlier quoted context omitted.
That said, the healthy effects of the exercising on the sea must counteract the bacteria That was my initial thought as well, basically. Cystic fibrosis is a deadly genetic disorder that makes one vulnerable to infection. Last I checked, the life expectancy was about 37 in the US, though someone on HN recently said it is now age 40. People with CF who surfed had such a better prognosis than average that it led to dev…
>But everyone tells me that's anecdotal Most people have NO idea/sympathy for what its really like to have a disease/condition that medicine doesn't totally understand yet.. including doctors. The bar for a certain treatment to be scientifically accepted is rightly pretty high - studies/research etc. that takes decades to do. But as a patient, when medicine has no real treatments to offer you, of course our own bar s…
As is often the case, the point I was trying to make has been completely ignored while multiple people jump on the personal angle of whether or not I actually know something medically useful and most comments are coming from an assumption of no, she can't possibly know anything medically useful, she is merely crazy. This is always a personally frustrating experience for me.
I'm human. I slept 14 hours last night and I am still tired and it is aggravating that the entire world wants me to either scientifically prove my personal opinions about my firsthand experience or be condemned to never, ever mention them at all. Sheesh.
So it might be time for me to just step away from this derail of a discussion because a. It is off topic and b. Most of it is openly and unnecessarily hostile and dismissive.
I'm not trying to prove anything here. I'm just human and don't always know how to separate my firsthand experience of life from some point I am trying to make and for whatever reason the world at large is often excessively interested in talking about that personal piece, whether the topic is my health or something else. And it is frequently a very negative experience for me.
TLDR: Thanks, but that wasn't the point and if I step away from this discussion it is not an admission that other people are right and I am wrong. It is just evidence that this discussion is off topic, not a positive experience for me and I don't feel like continuing it.