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0 pointsMz14y ago0 comments

I'm guessing you didn't look at the site.

A) I am well on my way to being well. Although I continue to learn, the site does not exist to get me well. It exists because I made some off-the-cuff remark on an email list where I was held in high esteem, got attacked for it, was politely asked to "prove" what I had said and I said "give me a day or two to get back to you so I can put together the information". The response to the next email where I backed up my remark was stuff like "Can I forward it to someone I know who has a child with the same condition?". So I began working on putting the information on a website so people can share the links without asking to forward my emails.

B) It turns out that there is actually research that backs up some of what I kind of stumbled across. But it doesn't get much press because it won't make any drug companies rich.

C) I don't mind helping people but 1) I have bills to pay myself 2) if it benefits others and has value, why shouldn't I get something in return? and 3) people don't take it seriously when it isn't "for profit". Just being some nice person who got well and is willing to share what I know is very unconvincing for helping others.

D) I often contemplate just taking the site down. I am okay with just getting on with my life now that I am healthy enough to do that. But other people have made it clear they don't want it to come down. Both this year and in a previous year, donations paid my hosting service renewal when I couldn't afford it (this year: Thank you HN!).

As for the ethics question, I have had that thrown in my face before. People are dying from what I have and doctors can't really help them. Is it possible for people to misuse the information on my site and wind up with a problem because of it? Yes. Is it likely that doing nothing is worse? Very much so. My approach is much more conservative than what doctors do and much safer.

Thanks very much for responding.

0 comments

seanp2k14y ago

You are 100% incorrect about C-3. I don't take sites that want you to pay for information seriously. Information and knowledge should be free. Charging for information makes you "them" instead of "us" and totally leads people to not trust you.

Examples: - Get rich selling stuff on ebay! (internet treasure chest) - Save your marriage! (google "save your marriage ebook") - Penis enlargement! (...) - How one mom found a cheap way to whiten her kids teeth! (in ads everywhere, usually leads to a site where you pay for an ebook).

Also, people will pirate it if it's any good.

jodrellblank14y ago

You don't take academic sites with paywalls seriously? You don't take O'Reilly subscription eBooks seriously? You don't take curated commercial data feeds seriously? You don't take licensed film/Netflix style sites seriously?

You do value free "get rich selling stuff on eBay" and "save your marriage" sites?

People want free information, but people don't act like free information has any value.

If I tell you about the feeling elimination technique, which is useful where you imagine a situation and feel a sudden physical feeling (e.g. imagine a being in an aircraft and feel your stomach tense up and you get anxious, or imagine eating fish and your face screws up in disgust, or imagine confronting someone and wanting to curl up and hide, that kind of thing).

That the technique involves imagining one situation hard, noticing the physical reaction in your body, focusing on what you're imagining to intensify the physical response - like grasping a nettle hard - then holding that state while counting backwards from your age to 0 (start in 5 year increments to age 5, then 1 year increments to age 1, then month increments to -9 months) and each time pause a couple of seconds and ask yourself if you still feel this way.

That's it. It exists, it works, if you practise doing it you can get rid of some kinds of automatic fears which have been a deep set part of your life for decades, and you can do so in minutes. This is free, potentially life changing information. I would bet money that you wont even try it, and think it probable that you wont even take seriously the idea to try it and plan to do so "one day" and never do. That nobody who reads this will give it a second thought.

But if you'd paid good money to meet a consultant about some fear you have, and they told you about it, you would think hard about it, try it, and when you fail the first time, you would try again. And if you can't do it, you would try a different fear assuming it was you at fault not the idea. But if it's free, you're much more likely to try it once and if you can't get it to work first time on one fear, assume it's bunk.

MzOP14y ago

Information and knowledge should be free.

I completely agree. And the site is free for use. Still, how does one monetize an informational site? If I know something of value that was hard-won knowledge, how do I share that without feeling like I am cutting my own throat for the benefit of others?

(Please note that I have said elsewhere in this discussion that I don't expect this site to be where the money is. But problem solving for this site is intended to be a learning experience for me.)

Also, people will pirate it if it's any good.

In this case: Yay!

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