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It's a harder problem than it appears. As I've written about before on Hacker News, I have Celiac disease and over my lifetime I've suffered from a variety of nutritional deficiencies. In the past year I've gone from suffering heart problems so bad that I was becoming completely unable to sleep at night to having them nearly fixed [1]. (Point here being, we are waaaay beyond anything "placebo" could possibly do. Bright, shining, clear-as-day signals here.) I've done this by finding information from various sources about supplements that can address these problems. Now, being a HN denizen and reasonably rational, I've done this by figuring out nutritional deficiencies and reading various papers. So I'm not taking random herbs or anything; I'm taking amino acids and magnesium and some other things that I can find various papers that suggest that they may help. I can even find actual doctors who seem to be quite reasonable and respected in their field recommending the core of regimen I'm on, so I'm far away from looney-land. However, in strict scientific terms, that is as far as science has gotten... some papers that suggest that further research is necessary, but said further research has not (as far as I can tell) been done yet, and substantial case reports from doctors but not much in the way of formal studies. Everything I've tried, generally speaking the worst case scenario is that Nothing Happens, the upside is "maybe my heart will start working better", and the monetary cost has been negligible to me, so I've been able to work through things and figure out what helps, and the things that didn't help my particular problem. (It is often pointed out that drug companies have little incentive to study the effectiveness of unpatentable substances on disease. My Celiac may be skewing the results, but based on the digging I've done into may various issues over the years, I have to say that it certainly appears to me that there is good reason to believe that there are a lot of cures, treatments, and ameliorations available for a whole host of diseases that are often studied in a cheap paper with a small sample size, or even in the form of case studies, but that are never followed up on because nobody's got the funding if it isn't going to produce a drug. If you've got something even slightly rare and you aren't getting a good treatment, I highly recommend trawling through the sludge of the internet and filtering it through a scientific understanding. You may be surprised at what you can find. You'll certainly find sludge, but there may be unexpected diamonds in there. Very often many of the interventions carry little risk beyond not working and are very cheap to try. I always double-check and triple-check the risks first, but sometimes it's as simple as "have you tried vitamin B supplements?" or something, where the risks are generally very well understood.) But drawing a bright shining line between the resources I used to do this and "psuedoscience" is going to be very, very difficult. In fact at times the two were outright mixed together, and I had to untangle them myself. Yes, we know the worst stuff when we see it, absolutely, and I am not suggesting this space should be unregulated. However, I am suggesting that free speech is still a concern here, and I will personally be very unhappy if you lop what could very well be 30 years off my life in the name of "protecting" me. Is it a challenge to filter this stuff correctly? Yeah. Nobody said life would be easy. [1]: Conventional medicine put me on a heart monitor for a month and proceeded to announce to me that it was all normal that my heart was beating so wrongly that it was literally keeping me up at night. I have to admit this was definitely a bit of a blow in my confidence in the medical field. It all worked out for the best in the end anyhow; fixing the underlying deficiencies is a better idea that trying to take any medication to patch over the broken system, which is probably what would have happened. As my own further digging into the problem revealed, heart arrhythmia medicine can be a lifesaver in some circumstances, but it is also almost as like to cause the problems as to improve them. I'm pretty sure it wouldn't have helped me, because my problem was, again, missing nutrients, and generally you can't medicine over that. (So, for the aforementioned reasons, I don't have an official diagnosis, but I'm pretty sure it would be called "Vagal Paroxysmal Atrial Fibrillation". My mother suffers from AF, though I'm not sure of the exact subclassification, and I get my celiac from my father, so... yay genes.) |