> There isn't a summary because I get accused of having Munchausen Syndrome ...
And it has occurred to you that you may have Munchausen Syndrome, yes?
> It is quite dangerous to try to tell my story.
Not if you tell the truth. "Truth never damages a cause that is just" -- Gandhi
> It routinely results in public attacks, and moderators typically side with my attackers.
But with no justification or reason at all. Right?
It's obvious that you're playing this out for all it is worth, without providing any real information, portraying yourself as the innocent victim of persecution, but in a way calculated to avoid providing any actual data, or anything that might lead to a resolution.
I wonder if you realize how transparent you are, to an objective observer?
People with Munchausen claim to be ill and manufacture fake symptoms when they are not. I was ill and am getting well, a claim most people will not accept as true.
What "real information" do you want? I linked to my website. You are the one focusing on dismissing me, personally, and have apparently not bothered to even check the website.
I think the reason people dismiss your posts is because your posts are always acrimoniously bitter, and usually off-topic and centered around your (unfortunate) medical history.
If people continually dismiss your stories and call you a liar...why keep sharing them? Why do you feel the need to spread the bitter resentment to every thread you comment in?
This thread is a good example: why did you need to say "I also know it is nearly impossible to talk to people about that. My views and experiences are dismissed wholesale before I even open my mouth."? It added nothing to your argument, except for dragging your medical condition into the conversation (which has since taken over this thread).
However, at the end of the day, I don't know you at all and do not presume to judge your situation. This is the internet, so don't take anything other people say too seriously. I'd like to wish you well to you and your family =)
They weren't always acrimoniously bitter. They have become bitter, due largely to being dismissed and attacked. And that is what has taken over this discussion -- multiple people dismissing and attacking me while I defend myself. There has been no real discussion of my medical situation. And to call my recovery "unfortunate" is merely another form of attacking and dismissing me. All of which you are free to stop doing if it bothers you so much that I feel I have a right to defend myself when so treated.
What? I meant your CF being unfortunate, not your recovery. I don't think anyone would say a recovery is unfortunate. Sorry if I was unclear about that, it was not my intention.
To my point though: if your posts have become increasingly bitter as people stop listening to you...why keep posting at all? That was my point.
I'm a diehard Windows Phone 7 fan, but people on HN decidedly do not like WP7. I tried to defend it for a long time but simply stopped, because no one listened to me or cared. I don't go into iOS/Android threads and post bitter comments about WP7. It isn't productive.
So that's a silly analogy (obviously, phone operating systems != life threatening disease), but the substance of my point is the same.
I have made every effort to avoid arguing with people about this. It has basically left me no outlet for discussing it at all, which is something I very much need. This is a big part of my life. It is not going to go away. Being suffocated by having zero outlet is, at this point, a bigger problem than engaging in debate with people have zero intent to be supportive of my need to talk about it. I wish it were not so.
> I have made every effort to avoid arguing with people about this.
Obviously false -- you've done exactly the opposite.
Your rant reminds me of the girl in "Five Easy Pieces" who, while riffing endlessly about something perpetual and tiresome, interrupts herself periodically to say, "But i don't want to talk about it."
> Being suffocated by having zero outlet is ...
Obviously false. You have any number of outlets for your rant, including this one.
> It has basically left me no outlet for discussing it at all ...
You're leaving out the option of writing a comprehensive scientific article that replaces emotion with reason and tries to change the world instead of complaining about it. An article like this:
You have done no such thing. You haven't defended yourself, you have only complained about unfair treatment, just as though you were as mentally ill as we are beginning to suspect you are.
And your choice of forums can only add to the presumption: "Hello, computer nerds, here's my personal story about evil, uncaring doctors".
> All of which you are free to stop doing if it bothers you so much that I feel I have a right to defend myself when so treated.
And you have the right to stop posting, whenever you want.
> People with Munchausen claim to be ill and manufacture fake symptoms when they are not.
People with Munchausen fake medical difficulties. You're displaying all the classic symptoms. The distinction between suffering from an imaginary ailment, or slowly recovering from an imaginary ailment, makes no difference.
> You are the one focusing on dismissing me, personally, and have apparently not bothered to even check the website.
I read your comments there, and they're as uninformative as your comments here. Color me surprised.
> What "real information" do you want?
If you weren't a Munchausen sufferer, you would already know the answer to that question, and you would have already answered it -- either here or on the other forum at which you vent your dissatisfaction with reality.
What discussion is that? If you had any idea what a discussion consisted of, you would be well underway by now. And you would have avoided trying to connect CF with
"germs", even among computer people, people you obviously chose in the forlorn hope of sympathy from ignoramuses.
I am going to guess you are sarcasticly "surprised" because he is saying something that you have heard many times before... my money is on, "Because it is true".
Based on what I've read in this thread and your site, it seems that at the very least, you have no idea how to construct a viable argument and defend it with the scientific and medical community. Until you realize this and solve this problem, you won't make any headway.
And depending on what your idea of success is, there are people making successful challenges. They just understand the framework they need to operate in.
I am not specifically looking to defend an argument with the scientific and medical community. I am looking for a means to effectively communicate with people who might be interested in useful information for their own health. I am aware I need to back up my statements with established research. I am still working on figuring out how to do that. Unfortunately, again, simply dismissing me does not help me find that path forward. I realize you may have no goal to help me find a path forward. But that is my goal and it is why I discuss the matter here at all.
And it has occurred to you that you may have Munchausen Syndrome, yes?
> It is quite dangerous to try to tell my story.
Not if you tell the truth. "Truth never damages a cause that is just" -- Gandhi
> It routinely results in public attacks, and moderators typically side with my attackers.
But with no justification or reason at all. Right?
It's obvious that you're playing this out for all it is worth, without providing any real information, portraying yourself as the innocent victim of persecution, but in a way calculated to avoid providing any actual data, or anything that might lead to a resolution.
I wonder if you realize how transparent you are, to an objective observer?