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Ask HN: How can I do something meaningful?

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Re: Ask HN: How can I do something meaningful?

#141

Post by Mz »

gfodor wrote: post #136
Mz wrote: post #99

Earlier quoted context omitted.

Thank you for your reply. I am guilty as charged of thinking that the whole thing is rather stupid. When I discovered that addressing excess acidity was effective in helping me need less medication, I thought this was some major revelation. It turns out it is rather well established in the CF community that CF leads to very extreme excess acidity. Yet it goes largely untreated, in spite of acidosis being a known seri…

It sounds to me like your physician is a poor one. One of the first rules with CF is to embrace what seems to work well for the patient, and try to understand it. I'd suggest you attempt to find a new one, or at least contact others in better clinics if you wish to share your story with someone who might be more interested to listen. I've had a lot of success at the CF clinics at Johns Hopkins, VCU, and Stanford.

I actually haven't seen a physician in roughly five years. So that doesn't happen to be a concern for me. However most people I meet, you included, are simply dismissive. I appreciate that you haven't been ugly about it but your response -- that I have an attitude problem of some sort, that my views are filled with logical fallacies and so on -- is the typical response of the majority of people in the CF community whether they are patients, family members or professionals. So I really see no reason to believe that getting a different doctor would make some sudden, radical difference in that regard.

Folks who are genuinely interested in my experiences and my understanding of the problem space are few and far between. I leave the site up for the benefit of the small number of people who are interested in the information. These days, I spend a great deal less time posting on health lists than I used to. It accomplishes very little and gets me loads of very negative attention. So I see little point in pursuing such activities. Having gotten myself basically well, my main focus is on other things these days.

Take care.

Re: Ask HN: How can I do something meaningful?

#142

Post by gfodor »

Mz wrote: post #141
gfodor wrote: post #136

Earlier quoted context omitted.

It sounds to me like your physician is a poor one. One of the first rules with CF is to embrace what seems to work well for the patient, and try to understand it. I'd suggest you attempt to find a new one, or at least contact others in better clinics if you wish to share your story with someone who might be more interested to listen. I've had a lot of success at the CF clinics at Johns Hopkins, VCU, and Stanford.

I actually haven't seen a physician in roughly five years. So that doesn't happen to be a concern for me. However most people I meet, you included, are simply dismissive. I appreciate that you haven't been ugly about it but your response -- that I have an attitude problem of some sort, that my views are filled with logical fallacies and so on -- is the typical response of the majority of people in the CF community wh…

I'm a skeptic, as anyone who has CF should be. As I said, I am happy for you, but you need to be very careful when making claims as you do since lives are at stake. If you are going to post information that CF patients might act upon it is your responsibility to put it into appropriate context, try to disprove it yourself, and be open to alternative theories as to why your approach worked other than that you have cured your CF through consuming sea salt and tonic water.

The history of CF is full of stories like yours where people seem to be onto something only to find out that it was circumstantial or not scalable to the rest of the CF population. This is still a very mysterious disease. My point is that a large part of the reason you might not be taken seriously is due to your tone, your apparent skepticism of western medicine, and your lack of expertise on the fields you are making claims about.

If you do not want to try to use the information you have to help others, so be it. But if you do, posting on health lists and arguing over the internet is not the way to do it. The way to do it is to educate yourself enough that you can hold a real discussion with medical researchers, and find medical researchers (or become one yourself) who would be willing to test your claims empirically. You've positioned yourself as a champion against the establishment, and this is not the way to actually get anything meaningful accomplished. Posting anecdotal evidence, contradictory claims, and lots of random speculations about the effects of various foods and dietary changes without accurate measurement and study does little good towards this end, if the goal is to help the wider CF community, despite your intentions to be helpful.

Re: Ask HN: How can I do something meaningful?

#143

Post by Mz »

gfodor wrote: post #142
Mz wrote: post #141

Earlier quoted context omitted.

I actually haven't seen a physician in roughly five years. So that doesn't happen to be a concern for me. However most people I meet, you included, are simply dismissive. I appreciate that you haven't been ugly about it but your response -- that I have an attitude problem of some sort, that my views are filled with logical fallacies and so on -- is the typical response of the majority of people in the CF community wh…

I'm a skeptic, as anyone who has CF should be. As I said, I am happy for you, but you need to be very careful when making claims as you do since lives are at stake. If you are going to post information that CF patients might act upon it is your responsibility to put it into appropriate context, try to disprove it yourself, and be open to alternative theories as to why your approach worked other than that you have cur…

I would be very concerned if you were not skeptical. I have no issue with skepticism. My experience has been that individuals new to the CF community or individuals who have long pursued alternative approaches are the most able to understand and act on the information. I have come to believe a more information dense delivery mechanism would be helpful. I don't personally see any reason to believe that normal research channels are the way to go with this. I like being helpful. I just don't feel obligated to cram my views down anyone's throat and most members of the CF community have made it abundantly clear that they have no interest in what I am doing. I see no reason to either fight with people or martyr myself. The information is there if someone is interested and has already helped some people. So I see no reason to defer to your opinion that sharing it online is not the way to go.

Take care.

Re: Ask HN: How can I do something meaningful?

#144

Post by edmullen »

quique wrote: post #138

Epic question for humanity but I would phrase the question as, "how do I do something with meaningful [impact]?" Currently I think of meaningful impact as: -The depth of behavioral change you create in an individuals' lifetime -The breadth and scale of behavioral interactions created eg you use Instagram for 1min/day for a month with 100 friends vs a computer for 12hrs/day for life with millions of people (note: I'm…

Before you can make something meaningful, you must immerse yourself in problems, either yours or someone else's. You need to learn what the ailments are, then find a cure. It's easy to see when someone is simply targeting a market they think is ripe for exploiting, and are not really immersed in solving problems.

Re: Ask HN: How can I do something meaningful?

#145

Post by chubs »

Find a mentor. If you're serious, and not just 'going through a phase', you'll need people to spur you on with this. Find some organisations you admire, eg kiva, and email the founders to see if they'd mentor you or if they could recommend anyone.

Some friends and I have been going through these issues lately, and we're desperately trying to find out how we can change the world. Here's what we've come up with:

* Do what you can now. Start small. eg Don't put it off until "one day when i'm rich". * Work with what's in your hands, in your sphere of influence. If nothing is in your hands right now, you can change yourself. * Find friends who are of the same mind, and spur each other on. * Read LOTS. Grow yourself. Read about leadership. That's the starting point. Start by reading seth godin, i'd recommend. * Change the world for the better in one small way every day. * Learn how to take initiative, start things, and complete them.

Re: Ask HN: How can I do something meaningful?

#146

Post by quique »

edmullen wrote: post #144
quique wrote: post #138

Epic question for humanity but I would phrase the question as, "how do I do something with meaningful [impact]?" Currently I think of meaningful impact as: -The depth of behavioral change you create in an individuals' lifetime -The breadth and scale of behavioral interactions created eg you use Instagram for 1min/day for a month with 100 friends vs a computer for 12hrs/day for life with millions of people (note: I'm…

Before you can make something meaningful, you must immerse yourself in problems, either yours or someone else's. You need to learn what the ailments are, then find a cure. It's easy to see when someone is simply targeting a market they think is ripe for exploiting, and are not really immersed in solving problems.

Totally agree, immersion (plus interviews & observation) is often essential to discovering insights, especially for changing behaviors and solving latent needs.

I've learned first hand immersing myself in communities like East Palo Alto with http://muralmusicarts.org and in nations like Myanmar, South Africa & the White Mountain Apache tribe with http://extreme.stanford.edu.

Re: Ask HN: How can I do something meaningful?

#147

Post by ed »

aaronbrethorst wrote: post #85
edw519 wrote: post #27

Please don't fall into the trap of believing that your daily work and working for the greater good are mutually exclusive. You may not realize it, but you are often contributing to the greater good on a daily basis simply by doing your job. It's sometimes hard to visualize this because we are often many degrees of separation away from the "end user". You don't actually have to be physically building that home for the…

Wow, that makes one of us. Most[1] of my day jobs over the past eight years have been: - Make sure Visual Studio 2005 doesn't look like shit. - Make sure Visual Studio 2008 doesn't look like shit. - 'Something something, dead Microsoft product.' - Make sure we can ship this product in order to get a 'B' round of funding. - 'Something, something dead startup.' And, on that depressing note... On the other hand, if you…

I love cocoacontrols! As does everyone I've referred to it. I'm a regular visitor, so thanks! :)

Re: Ask HN: How can I do something meaningful?

#148

Post by aaronbrethorst »

ed wrote: post #147
aaronbrethorst wrote: post #85

Earlier quoted context omitted.

Wow, that makes one of us. Most[1] of my day jobs over the past eight years have been: - Make sure Visual Studio 2005 doesn't look like shit. - Make sure Visual Studio 2008 doesn't look like shit. - 'Something something, dead Microsoft product.' - Make sure we can ship this product in order to get a 'B' round of funding. - 'Something, something dead startup.' And, on that depressing note... On the other hand, if you…

I love cocoacontrols! As does everyone I've referred to it. I'm a regular visitor, so thanks! :)

Great to hear, and thank you! Please feel free to hit me up with any feedback you might ever have. My email address is on CC's about page.

Re: Ask HN: How can I do something meaningful?

#149

Post by karambahh »

kamens wrote: post #140
karambahh wrote: post #109

Earlier quoted context omitted.

Sorry to hijack OP's post, but I'd like to take this opportunity to ask you a few things about Khan Academy. All I know about is based on a piece that appeared in Wired US august issue. To me, your method relied on a)having kids learning a lesson at home b)drilling exercises. On a), I must say that it surprised me much. It means that kids must all have computer available at home (which is clearly not the case, even i…

@rubergly handled the drilling comment well, so I'll just quickly add: 1) We do want kids to learn lessons at home so that teachers are freed up to do more project-based learning and...well...teaching (instead of lecturing). This doesn't mean the world falls apart if kids aren't watching videos at home. As @rubergly says, computers in the classroom allow for individualized instruction and solid data, which humanizes…

Thanks for your answers

Indeed, I used the word drill in precisely that meaning.

I think I might have been biased by wired's piece. Maybe it's just me or maybe they failed to render correctly what your org really is.

Re: Ask HN: How can I do something meaningful?

#150

Post by jodrellblank »

nick_urban wrote: post #52
jodrellblank wrote: post #3

http://lesswrong.com/lw/3gj/efficient_charity_do_unto_others... "Just as there is only one best charity, there is only one best way to donate to that charity. Whether you volunteer versus donate money versus raise awareness is your own choice, but that choice has consequences. If a high-powered lawyer who makes $1,000 an hour chooses to take an hour off to help clean up litter on the beach, he's wasted the opportunit…

I agree that people who are capable of doing high level work should do so, but the comparison shouldn't be a high-powered lawyer vs. picking up trash, it should be: being a high powered lawyer vs. being a "high-powered leader" of a social movement. If Gandhi had decided to continue being a lawyer and donating his profits to charity, there's no way that all the cheap labor he could have hired would have added up to th…

It's more of an encouragement to think about the choices you make than a blanket "don't go doing good directly" warning. Trash collecting for an hour is easy to value compared to an hour of legal overtime, but an hour of "high powered leading a social movement" is much more nebulous.
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