[illuminate]

"It is an observation after the act, not an assumption."

You are unsatisfied with the "assumptions" of medical science's model, so you are offering your own interpretation of reality. Why should your assumptions about behavior and causal relationships be judged any less harshly than you judge the dominant model?

[Mz]

I am not trying to offer my own "interpretation" of reality. I am trying to figure out how to share my best understanding of what worked and why. I don't assume it will merely stop there. And I am trying to figure out how to cross the chasm of communication. However, when I make sincere efforts to try to find out what I need to do to get there from here, the most common result is dismissive and hostile personal attacks, not useful feedback.

I realize that is not your problem to solve. But when you accuse me of not even trying, the only meaningful reply I have is that I can find no path forward since I am constantly attacked and shut out. For now, I remain at an impasse, unable to develop the site in a manner satisfactory to those who feel it is inadequate and feel that is sufficient justification for ugly ad hominems.

Your willingness to talk to me about this is essentially a first. Most people either wish to paint me as a potential savior, who can magically get them well without this communication process, or evil and insane. I want neither role. So I have intentionally stepped away from situations where I was given no other option. I believe it is far better to not share the information than to have people trying things on personal faith in me with no understanding of the process involved. I view that as deadly dangerous. Educating people is hard work. It is impossible work when they want salvation rather than education -- when they want me to tell them what to do, not how to think and problem solve on their own.

So thank you for taking the time to talk to me.

[illuminate]

"I am not trying to offer my own "interpretation" of reality. I am trying to figure out how to share my best understanding of what worked and why. I don't assume it will merely stop there. And I am trying to figure out how to cross the chasm of communication. However, when I make sincere efforts to try to find out what I need to do to get there from here, the most common result is dismissive and hostile personal attacks, not useful feedback."

My point is, as an individual point of data, you are unable prove that what you did had anything to do with the end result.

"I remain at an impasse, unable to develop the site in a manner satisfactory to those who feel it is inadequate and feel that is sufficient justification for ugly ad hominems."

Well, without proper research methods and controls being employed, it is tough to extrapolate the experience to others.

"Most people either wish to paint me as a potential savior, who can magically get them well without this communication process"

Could it be possible that you are fitting into this mold, where your condition is varying as your expectations shift?

[Mz]

As I have already said, I am not an individual data point.

I am not looking to extrapolate the experience to others. I am trying to figure out how to share my best understanding. What I have done is not "unique". I have, at best, gone farther, faster than others. A lot of people are pursuing alternative treatments and better nutrition to help themselves. Most people are far less open about that fact. It gets seriously bashed on CF lists.

The climate used to be a lot more rejecting of anything proactive and filled with a lot of prayer requests on the assumption that no human could really do much, not even doctors. The one thing I have managed to do so far is to change the discussion from "My child needs surgery. Please pray for us." to "My child needs surgery. Please tell me your experiences with this specific surgery. Did it help? Do you regret it? Were there complications? What is the best way to prepare for this?"

I do not really know what you mean by your last question. I have gotten off multiple drugs. I no longer have constant excruciating pain. I no longer dehydrate so readily. I am more resilient to both heat and cold. My skin does not tear as readily. My blood sugar is more stable. And on and on. There are significant physical changes. Those are not the result of some kind of magical thinking. They are the result of sustained effort to resolve the underlying problem.