3 ms·
>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 un
by zaptheimpaler 9y ago
>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 should be lower! Even if sea salt hasn't been studied in a million people with double-blind placebo-controlled blah-blah studies, this kind of experiment has zero downside and potentially a very high upside - you would have to be crazy not to try it.
Anyways, just want to offer my sympathy and ranting as someone with a rare and ill-understood disease. Tim Ferriss and the whole "bio-hacking" movement also have this idea of "you are an N of 1" - we don't need permission to do basic experiments on ourselves. And for many millions of people for whom medicine has no answers, this really is the best we have.
Please keep talking about what works and what doesn't work for you regardless of haters - anecdotes can help others and the right anecdotes will someday become experiments, which will one day become well-accepted "science". Maybe in a 100 years medicine will recommend sea salt for CF, it will be just as effective then as it is now, and all that will have changed is it will have the "REAL SCIENCE TM" stamp of approval.
- DoreenMichele 9y agoI appreciate the vote of support and sympathy, but I will note that I was just trying to agree with someone else's thought that surfing must do things that are generally beneficial. I think the established fact that it is known to improve the prognosis of people with CF, who are particularly prone to developing antibiotic resistant infections, is pretty strong evidence that this thought has merit. 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.
- ako 9y agoI would not just assume that sea salt has zero downside: http://www.pbl.nl/sites/default/files/cms/publicaties/650010033.pdf http://www.pbl.nl/sites/default/files/cms/publicaties/650010... "In the Netherlands a considerable part of PM10 is of natural origin. On a yearly average basis we have quite a large contribution of sea salt: 4 - 7 μg/m3. ... It would be wrong to conclude that this natural contribution does not have any associat- ed health effects. "