I am trying to figure out how to show it and have been for a long time. What you seem to not understand, and likely do not wish to understand, is that showing it is quite difficult when a) everyone attacks you and b) the mental models which worked are "unproven" and do not fit easily into the mental models other people require as evidence.
People in this discussion are being very vehement about calling me crazy. There is no opening there for discussing how I view CF differently from current mental models. And to a large degree my credibility problem boils down to either you believe my story, that I have CF and got well and it is the basis for useful insights, or you do not. Most people do not. You can use whatever excuse du jour you want, but at the root of it, that is why I get dismissed: Because the entire world believes people with CF do not get well. Period. To claim otherwise automatically makes one "crazy".
I continue to try to figure out how to more effectively engage people in discussion. But most people are unwilling to engage me in discussion. Even when they are being listed for transplant and in serious decline. If the speak to me at all, it is to reiterate that belief that their decline is inevitable, everyone knows that. People are dying to prove that belief true. I understand why they feel the need to defend it, but I have tried every avenue to try to find a means to talk to people. HN is less ugly about it than most places. This is actually as good as it gets, which, unfortunately, is not very helpful in my effort to find a means to present my case effectively.
If I had come out with a phd length dissertation on what I did to get well, most likely no one would read it. I am sorry you don't get my point here. I hope you are never in the kind of position I am in currently. Presumably you don't get it because you haven't experienced anything like it.
> ... my credibility problem boils down to either you believe my story ...
Busted. Science nowhere depends on belief. You, on the other hand, would like this to be an issue of belief, as though it's 1500 and you're being tried for witchcraft.
> If I had come out with a phd length dissertation on what I did to get well, most likely no one would read it.
Even more likely, you're mentally ill.
> I am sorry you don't get my point here.
On the contrary -- everyone who reads your posts gets the point right away.
Maybe showing it is difficult, but it looks to me like you're not even trying. You make very poor claims, and only present stuff that's even remotely sensible later on. For a good argument, you need to think through all of the possible objections ahead of time and then present your best case, not your worst.
Ditch the emotional language, ditch the obvious fallacies, and present a good argument. If you are still dismissed with that, then you can complain about it.
I know you say that you've done this and have still been dismissed. That does not excuse putting forth bad arguments now and then complaining about the reaction. Do your best, or don't bother.
> Because the entire world believes people with CF do not get well.
It really depends on what you mean. If you mean that the genetic defect(s) causing CF resolved, then that basically cannot be true.
If you mean that you have genetically confirmed CF but the progressive nature of the disease was halted due to some novel therapy, then that would be a case report worthy of publication in a high impact factor journal.
Halted and reversed. Of course the genetic defect cannot be removed. But since it is progressive, no, it is not merely genetic expression. Hair color is mostly genetic expression and in most people does not vary that much, until they go grey. A progressive condition is a combination of genes and environmental factors, something most people seem to have difficulty with. It gets chalked up mostly to "genes" as a means to insist the progression cannot be halted.
A quote from the above: "Any of a group of progressive muscle disorders caused by a defect in one or more genes that control muscle function and characterized by gradual irreversible wasting of skeletal muscle."
> A progressive condition is a combination of genes and environmental factors ...
I am now going to ask you to stop posting these lies in this public forum. Your mental illness should be a private matter, not an excuse to mislead people who are, or who might become, as ignorant as you are.
> Unfortunately, no, no publication is interested.
That is because you are a ignoramus, unqualified to offer advice to anyone on anything.
People in this discussion are being very vehement about calling me crazy. There is no opening there for discussing how I view CF differently from current mental models. And to a large degree my credibility problem boils down to either you believe my story, that I have CF and got well and it is the basis for useful insights, or you do not. Most people do not. You can use whatever excuse du jour you want, but at the root of it, that is why I get dismissed: Because the entire world believes people with CF do not get well. Period. To claim otherwise automatically makes one "crazy".
I continue to try to figure out how to more effectively engage people in discussion. But most people are unwilling to engage me in discussion. Even when they are being listed for transplant and in serious decline. If the speak to me at all, it is to reiterate that belief that their decline is inevitable, everyone knows that. People are dying to prove that belief true. I understand why they feel the need to defend it, but I have tried every avenue to try to find a means to talk to people. HN is less ugly about it than most places. This is actually as good as it gets, which, unfortunately, is not very helpful in my effort to find a means to present my case effectively.
If I had come out with a phd length dissertation on what I did to get well, most likely no one would read it. I am sorry you don't get my point here. I hope you are never in the kind of position I am in currently. Presumably you don't get it because you haven't experienced anything like it.