Whoa. Wasn't expecting that. Firstly, do not let go of your intense need/desire to fix this. There's someone out there who could really use your insights.
Reading through, couldn't help flash back to circumstances I've been through personally. The flawed medical system isn't new to me. Been called a hypochondriac. Prescribed tons of antibiotics. 'Irritable bowel' 'stress' 'migranes' 'whitecoat blah'; how quickly they'd come up their diagnosis. And, I'd gotten out (almost there) of my messed up state through a similar path as yours. Via massive dietary and lifestyle changes. Though, certainly nothing compared to what you've been through, and I've been trying to raise hell against the med community for quite a while. My folks are doctors; so I've had an insider preview of how bad things really are.
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Back to the CF community,
Would it be possible to get them on board, if you started over from a different perspective?
You've probably seen http://crohnology.com/. Certainly could derive a lot of inspiration from there. (including the HN post)
Existing communities might be harder to penetrate. Especially ones that're heavily moderated. BUT, I'd bet there's a ton of folks who share your opinions about the med community, and the ways they diagnose & treat symptoms.
What might the other reasons for why you've received those strong negative reactions be?
I'm all for the simulation/game idea. I'd even recommend starting a movement over on Kickstarter, if you don't mind the publicity. Although, it might be better if you'd build a new community from scratch first. Share your story, tell them what the goals are, speak of your vision. Trust me, it'll resonate with a whole bunch of folks. Much like 'crohnology' did.
AND, like you'd mentioned, the folks most active on these communities might have been there for quite some time, and to suggest something disruptive would do nothing but ignite a wildfire.
Could possibly start with those who've been diagnosed recently. The clueless ones. Perhaps the ones who haven't yet reached out for support. At a point where they're confused, looking for options, and they're just hoping some (usually clueless) doc has all the right answers. Of course, you'll still have to answer the question about how you'll actually get to them. Google adwords & seo, if not anything else.
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Lastly, I'm not sure you should pursue this with monetary goals in mind. Although, it'd be ridiculous to ignore the possibilities. Imagine all the positive press/attention/network/connections you'd attain, by starting a 'movement'. In a day and age where every other person seems to be trying their hand at the popular little social gizmo idea of the moment, making a real impact ensures you'll stand out like boeing 747 on a highschool playground. You've got a great story here. Leverage it. Save some lives.
Would you be willing to discuss your thoughts on how the simulation/game would work? What would the flow be like? How might it convince them about the changes they'd need to make?
Reading through, couldn't help flash back to circumstances I've been through personally. The flawed medical system isn't new to me. Been called a hypochondriac. Prescribed tons of antibiotics. 'Irritable bowel' 'stress' 'migranes' 'whitecoat blah'; how quickly they'd come up their diagnosis. And, I'd gotten out (almost there) of my messed up state through a similar path as yours. Via massive dietary and lifestyle changes. Though, certainly nothing compared to what you've been through, and I've been trying to raise hell against the med community for quite a while. My folks are doctors; so I've had an insider preview of how bad things really are.
-----
Back to the CF community, Would it be possible to get them on board, if you started over from a different perspective?
You've probably seen http://crohnology.com/. Certainly could derive a lot of inspiration from there. (including the HN post)
Existing communities might be harder to penetrate. Especially ones that're heavily moderated. BUT, I'd bet there's a ton of folks who share your opinions about the med community, and the ways they diagnose & treat symptoms.
What might the other reasons for why you've received those strong negative reactions be?
I'm all for the simulation/game idea. I'd even recommend starting a movement over on Kickstarter, if you don't mind the publicity. Although, it might be better if you'd build a new community from scratch first. Share your story, tell them what the goals are, speak of your vision. Trust me, it'll resonate with a whole bunch of folks. Much like 'crohnology' did.
AND, like you'd mentioned, the folks most active on these communities might have been there for quite some time, and to suggest something disruptive would do nothing but ignite a wildfire. Could possibly start with those who've been diagnosed recently. The clueless ones. Perhaps the ones who haven't yet reached out for support. At a point where they're confused, looking for options, and they're just hoping some (usually clueless) doc has all the right answers. Of course, you'll still have to answer the question about how you'll actually get to them. Google adwords & seo, if not anything else.
-----
Lastly, I'm not sure you should pursue this with monetary goals in mind. Although, it'd be ridiculous to ignore the possibilities. Imagine all the positive press/attention/network/connections you'd attain, by starting a 'movement'. In a day and age where every other person seems to be trying their hand at the popular little social gizmo idea of the moment, making a real impact ensures you'll stand out like boeing 747 on a highschool playground. You've got a great story here. Leverage it. Save some lives.
Would you be willing to discuss your thoughts on how the simulation/game would work? What would the flow be like? How might it convince them about the changes they'd need to make?