What I mean about Japanese Americans is that they were rounded up wholesale. There was no sorting. The immune system works like that. After years of being sick, as I grew stronger, exposures resulted in wholesale roundup of both the new germs and old ones which had been quietly flying below the radar for years.
I am not a big fan of vaccines, but that's a bear I usually try to not wrestle. Still, I appreciate the acknowledgement that the principle is valid.
I really dislike that mental model. I dislike the entire concept of "we don't really know what is going on, so we will claim your body is merely attacking itself for no real reason". I cannot prove it wrong, but I believe it to be wrong. For my edification, can you list some of the specific conditions which are viewed as "auto-immune disorders" caused by a "strong" immune system?
Why is difficult to accept that a system that evolved to attack certain cells can misidentify targets, especially if the real targets have selective pressures to mimic friendly cells?
It happens all the time in other systems (friendly fire, false positives in anti-virus-software)
They say that about my condition. It doesn't explain what is going on. If it were accurate, it should be actionable.
They say people with CF "overproduce" mucus and are "drowning in their own mucus". It isn't true. They are drowning in phlegm because they underproduce healthy mucus and become highly infected. Unlike skin, mucus membranes do not keep out infection when dry. One study found people with CF produce too little mucus, yet this crazy idea persists, even though it isn't logical and doesn't fit the facts.
Well maybe your specific condition is more complex, but I have a pollen allergy and antihistamine alleviates the symptoms. You didn't address the general mechanism at all.
Antihistamines alleviate the symptoms. They do not resolve the underlying problem. Allergies indicate some overload on the system. Removing other (chemical/biological) stressors on the system can help. So can nutritional support for the adrenals and thyroid. And if you need nutritional support, that is a weakness in the system, not evidence of an overly strong immune system. An allergy is a reaction to an outside source. I do not see how it makes sense to call reaction to an outside source an auto-immune disease. I think that is a bad mental model for the problem and actively interferes with finding real solutions which do more than merely alleviate the symptoms.
I am sorry that I don't know how to make my case in the format you feel it needs to be made in. That is a problem space I am working on resolving. But I did not get well in order to impress anyone or prove anything. I did it to get my life back. Being good at doing something does not automatically make one good at explaining it.
Nothing you state is in contradiction to the hypothesis that my symptoms are caused by the immune system misidentifying targets. Stressors or nutrition might have something to do with it, they might not. Maybe it's excessive hygiene and lack of exposure to certain infectious agents (http://en.wikipedia.org/wiki/Hygiene_hypothesis)
The proper treatment of the root cause is allergen immunotherapy, which completely consistent with the false-target hypothesis. I'm just too lazy to do it and I'm fine with treating the symptoms or suffering through them for a few weeks a year.
Then I am sorry to have wasted your time. I cannot really afford to merely suffer through what my condition causes and alleviating symptoms without treating underlying problems is known to kill people like me. That no doubt biases my assumption that an individual would prefer to solve the underlying problem, especially if it isn't a significant burden to do so.
"I dislike the entire concept of "we don't really know what is going on, so we will claim your body is merely attacking itself for no real reason". "
Likely because you have an unrealistic expectation for how the immune system actually works. One that works "too well" is not advantageous. "No real reason" is silly, because that is the job of the immune system, to attack invaders. If it misidentifies your own systems as invasive, it will attack your own systems. The mechanism is not in question, how to treat it best is.
And the conclusion about how to treat it will be strongly shaped by the mental models framing the inquiry. A lot of our current mental models are actively hostile to the body. There have been articles posted to HN about the fact that most medical research is highly biased from the get go to confirm the researcher's pre-existing bias.
"A lot of our current mental models are actively hostile to the body."
Because plenty of the conditions are due to the body's hostility to itself, or because what may kill invaders will also injure the body.
There are rarely, if ever cure-alls that do not affect the body's normal function, and assuming that the body's function is at all times beneficial is a mistake, a flaw in your "alternate" models.
The body can generally take care of itself, but does not always, in every person and situation. We are not perfect beings and clinging to those assumptions hurts humanity more than any flaw in the dominant model.
Reform is a wonderful, necessary goal. Tossing aside evidence-based medicine to do so is utterly foolish.
Your mental model is that it is due to the body's hostility to itself. You do not need to defend that because that is a generally accepted model. It is still a mental model, which is distinct from reality. Yet mental models also shape reality. How we perceive or frame something influences how we address it.
I am not saying nothing ever goes wrong or that we are perfect beings. Nor am I clinging to any assumptions.
"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?
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.
"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?
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.
It is an observation after the act, not an assumption. I did not go around intentionally exposing myself to anything. My focus was on removing things and eating better.
I am not a big fan of vaccines, but that's a bear I usually try to not wrestle. Still, I appreciate the acknowledgement that the principle is valid.