On the other hand, it is my understanding that in Vietnam, brain injury surgeries without anesthesia and going in through the roof of the mouth instead of the skull were pioneered on seriously injured soldiers which yielded important forward progress in how to improve brain surgery. So if these patients would currently die anyway, it gives them a shot they don't currently have and is a potential learning experience for medical practitioners.
When current methods lead only to death, there is no real downside to trying something new. We know exactly what we are doing and it leads to certain death versus we don't really know what we are doing and it leads to probable death -- most folks will take the "probable death" option.
oh actually I agree with you completely! Don't mistake my negative impressions of the study... I am being purely objective based on existing evidence. Subjectively, I think we should continue to do everything we can to advance this area of knowledge and think it is ethical to do.
My bias is showing. I have a deadly condition and when doctors wrote me off, I began trying stuff. I didn't die. I got better. So I was kind of speaking from first-hand experience, which tends to be kind of biased. I generally read as a Shirley Temple-esque optimist type, not because I am naïve but because I know firsthand what can be done when things can't really get any worse so you decide to try "the crazy thing".
The self-interventions you've discussed in the past aren't at all comparable to, say, inducing hypothermia... and if they were so easy a cure for CF then I'm not sure that pleading bias against housewives with one weird trick would really serve to explain why remotely plausible cures to CF aren't in broader trials.
I have a form of cystic fibrosis. I was not diagnosed until my mid thirties. It is genetic. After I was ID'd, they tested my sons. My oldest has the same diagnosis. I spent about 3.5 months bedridden prior to the diagnosis. After the diagnosis, doctors told me "people like you don't get well." Given that I had managed to live that long without a diagnosis, I figured that, armed with new info, I could surely improve on my track record.
Thirteen years later, I am drug free, the hole in my left lung has healed up, and most of the world thinks I am a teller of tall tales. I talk a lot less about it than I used to. I would like to help other people but talking about it mostly gets a shitstorm of controversy aimed at me. Apparently, former homemakers aren't allowed to know more than doctors. Or something.
If you wish to discuss it further, I suggest you take it to email.
When current methods lead only to death, there is no real downside to trying something new. We know exactly what we are doing and it leads to certain death versus we don't really know what we are doing and it leads to probable death -- most folks will take the "probable death" option.
But thank you for chiming in.