4 ms·

I suppose HN is not a good place to get answers for questions like this. There are plenty of AS support groups on Facebook, people there have more information.

zilian 8y ago
I am a hacker and this is about hacking yourself to get better, so I disagree. (I have AS too) Moreover, I don't really want to join a health support group on Facebook. Fellow hackers with AS and autoimmune disorders, shoot me a PM for my nonprofit project about data & collaboration with various health actors ! (Such as biologic producers/ big pharmas)
bjt2n3904 8y ago
Facebook is the last place I'd go to ask health questions of any sort. In record time I'd find every advertisement on the web would be advertising doctors and herbal treatments and medicine and what have you. Not to mention, the botspam accounts and general "low effort/content responses" I'd have to filter through.
DoreenMichele 8y ago
Most "support groups" for specific medical conditions are awful. They frequently wind up being places you can't actually talk about what's effective lest you offend or hurt the feelings of the sickest and most miserable members who typically are willfully ignorant and broadcast a "Why bother? It won't really help anyway" attitude. I'm not sure how to find or create a group for really discussing pro active caretaking in the face of a serious medical condition. There seems to be no place that actually gets done. You get that kind of discussion amongst very healthy people -- weight lifters, marathon runners etc -- looking to push for extra performance. You don't get it among people who are supposed to be terribly sick and defying that expectation.
- king_panic 8y ago
  +1 from personal experience using such forums/support groups
rorykoehler 8y ago
AS support groups in Facebook are heavy on pity and light on solutions. If I want to feel depressed I'll go there.

zilian 8y ago

I am a hacker and this is about hacking yourself to get better, so I disagree. (I have AS too) Moreover, I don't really want to join a health support group on Facebook. Fellow hackers with AS and autoimmune disorders, shoot me a PM for my nonprofit project about data & collaboration with various health actors ! (Such as biologic producers/ big pharmas)

bjt2n3904 8y ago

Facebook is the last place I'd go to ask health questions of any sort. In record time I'd find every advertisement on the web would be advertising doctors and herbal treatments and medicine and what have you. Not to mention, the botspam accounts and general "low effort/content responses" I'd have to filter through.

DoreenMichele 8y ago

Most "support groups" for specific medical conditions are awful. They frequently wind up being places you can't actually talk about what's effective lest you offend or hurt the feelings of the sickest and most miserable members who typically are willfully ignorant and broadcast a "Why bother? It won't really help anyway" attitude. I'm not sure how to find or create a group for really discussing pro active caretaking in the face of a serious medical condition. There seems to be no place that actually gets done. You get that kind of discussion amongst very healthy people -- weight lifters, marathon runners etc -- looking to push for extra performance. You don't get it among people who are supposed to be terribly sick and defying that expectation.

king_panic 8y ago
+1 from personal experience using such forums/support groups

rorykoehler 8y ago

AS support groups in Facebook are heavy on pity and light on solutions. If I want to feel depressed I'll go there.