> Not to dismiss your valid concern, the problem is that when doctor's kill someone, the death gets blamed on a disease or on the patient not taking the medication correctly, etc.
No. We are not in the time of Benjamin Rush. You have almost certainly read the Institute of Medicine's report on medical error. We know that we commit error and that we kill patients. We admit this. We need to do better and we seek evidence for how we can do so. We welcome outside help, and there is good money to be made by those who would participate.
Anyway, surely you know what we call alternative medicine that is supported by evidence: "medicine".
I'm absolutely certain that "modern medicine" doesn't have all the answers, and is woefully incomplete. I'm absolutely certain that there are things currently considered as "alternative medicine" that will turn out to be valid when practised correctly, and on suitable patients with suitable conditions. I'm absolutely certain that there are people for whom the prescribed treatment from "modern medicine" was, in fact, wrong.
I'm also absolutely certain that the vast majority of "alternative medicine" is not, in fact, better than "modern medicine." Exceptions will exist, and true scientists would use them as stepping stones to better knowledge, better practice, and better medicine. The fact that your experience indicates otherwise is a clear indication that things not only could be better, but should be better. The true failure is not that modern medicine was wrong and that you appear to have been saved by "alternative medicine", but that your success is not taken seriously, and is basically ignored, by those in whom we ultimately place our trust to find and implement cures.
That doesn't stop it being true that there are people who seek "alternative treatments" when they would be better off going with "modern medicine", and all evidence suggests that they are the vast majority of cases.
There are really huge problems with the entire current system. That is why so many people seek alternatives. When I turned to "alternative treatments", doctors were calling me crazy and denying me treatment. Had they offered me real treatment, I would have gladly taken it. This is not a journey I desired to make. Not at all.
But the problem with this being posted here is that the entire discussion will revolve around dismissing alternative medicine and not on what is wrong with the bigger picture that I and other people would consciously choose to take our chances on unproven methods rather than accept what little was offered us. I was in constant excruciating pain. If my own experiments had resulted in sudden death, I felt that was better than the slow torturous death modern medicine offers people like me.
I know you are a mathematician. I imagine this piece hits a nerve for you. But bashing alternatives doesn't fix the real problem and will help close off avenues of escape from a larger system which is not working. That larger failure includes conflating "health care" and "medicine" when they are not the same thing but it is hardly limited to that issue.
I don't know what you mean by real treatment, but a doctor will offer you what he knows is best based on his education, experience, past medical history and medical tests. If that's unreal to you, well, I don't know what can the doctor do about that.
> what is wrong with the bigger picture that I and other people would consciously choose to take our chances on unproven methods rather than accept what little was offered us.
I am sorry but I am missing the bigger picture. If the doctor could help, he will. If he won't, some other doctor would. It's a service industry after all. But when doctors say they can't help you, it's because they can't. What's the bigger picture here? Modern medicine has limitations, error rates and unknowns. People acknowledge and work on them.
As another commenter pointed out, the "alternate medicine" that actually works is called "medicine". If eating some fruit is curing cancer, it will be researched and integrated in modern medicine. The pharma companies or any other researcher have no reason not to accept things that work, whether they are manufactured in a lab or found in jungles of India.
My doctor told me outright "people like you do not get well. Symptom management is the name of the game." When I improved anyway, he expressed no curiosity. He scheduled me fewer and fewer appointments and indicated other patients were more in need of his services than I was.
It is routine that when patients with CF decline, their doctor makes zero effort to reverse the decline. Their decline is blamed on their genes. One doctor who did make real effort had a track record of helping people with CF improve. People used to travel very long distances to see him. Last I heard, he is now retired. But it is the norm in the medical community to tell people with CF, in essence, "Do not even bother to try. You are doomed anyway." even though all evidence supports the idea that this is not true.
> My views and experiences are dismissed wholesale before I even open my mouth.
Try describing your experience scientifically, rather than emotionally (as you are doing). See how that works. You might learn something you don't already know, as might your listeners.
The chances are very high that your story is one of coincidence rather then repeatable effect, but until you actually think about it analytically, you will never know.
I'm pretty sure you're talking to someone who has tried pretty much every possible avenue to get people to listen to her, failed, and is now rather bitter about how she is treated over the whole episode. Mz can speak for herself, but I suspect your advice is well-meant, but badly misplaced.
I think about it analytically all the time. And I know it to be repeatable. Twelve years of steady improvement would be one helluva "coincidence".
I spent many years trying to learn to argue "correctly" in my martiage -- unemotionally, citing my sources, etc. I can do that. But it matters not how well I do it, I am still dismissed. You are dismissing me without knowing my story, and conveniently blaming me. I imagine you will never see my point, no matter how I present it.
I am working on trying to find the right presentation. But your approach is largely antithetical to mine and mine got me well. Finding a meeting ground is challenging, and most people make no attempt to meet me halfway.
> I spent many years trying to learn to argue "correctly" in my martiage -- unemotionally, citing my sources, etc. I can do that. But it matters not how well I do it, I am still dismissed.
You're not being dismissed because your accurate, concise description is being ignored, you're being dismissed because you haven't provided an accurate, concise description.
When I want to argue a controversial point, I link to one of my many articles on diverse topics. Example:
I have made good faith efforts for many years which ascribed to the rules you are trying to dictate, to no avail. No matter how well I argue the latest supposed reason for dismissing me, it makes no difference. There is another excuse behind that one. You are only the latest in a very long string of people to dismiss me, then justify that dismissal as somehow my fault. It isn't anything new to me, not at all. It's a very old story in fact.
> I have made good faith efforts for many years which ascribed to the rules you are trying to dictate, to no avail.
Look, no offense, but you're obviously not going to win over intelligent readers with your diligent avoidance of anything substantive. You are quite obviously trying for sympathy but without providing anything concrete or testable. It's a symptom of Munchausen Syndrome.
> You are only the latest in a very long string of people to dismiss me, then justify that dismissal as somehow my fault.
It's not "somehow" your fault. It is your fault. You want sympathy but without earning it. This is why you have to keep changing forums -- people catch on too quickly.
You're a textbook case of Munchausen Syndrome -- imaginary ailments, ailment you go to great lengths to (a) complain about but (b) conceal, a marked persecution complex, the usual accompanying histrionic syndrome ("It's dangerous to try to describe my condition"), and a general inability to picture yourself realistically.
> And diagnosing someone with Munchausen after a few minutes of internet argument -- that's scientific? Since when?
Since psychology began to masquerade as a science. Want to get better, fairer treatment? Visit a hospital instead of a computer science forum. But I suspect you've already been turned away from any number of hospitals.
You're the one who chose to post your rant on the least likely of forums, one that discusses computer science issues. So either stop complaining about your treatment by unsympathetic computer scientists, or choose another forum.
I came here to learn to program, so I can more effectively share what I know. It is a legitimate interest in HN. I was not ranting. Merely defending myself against rabid attacks, as often happens when I try to talk about this.
Seriously, why does my supposed "mental illness" have you so wrapped around the axle? Such a strong, persistent negative response is the sort of thing I usually see from people with CF or with a child with CF who feel personally threatened by my views.
Anyway, I am about to go to lunch. I will be gone for a bit.
> I came here to learn to program, so I can more effectively share what I know.
Ah, yes, that would explain why you immediately asked about computer programming, instead of commencing your rant about your unfair treatment by doctors.
As to the legitimate topic, for analysis work and to avoid a lot of unnecessary minutiae, and to maximize your productivity, I recommend Python. There is lots online about Python, including a great number of analytical/scientific/technical libraries. There is even a free partial stand-in for Mathematica called "Sage" that can help you do some very sophisticated work in analysis, mostly written in Python:
Unfortunately, it didn't do much for me. Getting well took longer and was more arduous than I anticipated.
I have no doubt I am not at my best right now. But it takes two to communicate effectively and you have so far taken zero responsibility for your repeated ad hominems.
I am about to log off. I will check the links you posted some other time.
You realize that crazy coincidences happen all the time? A disease that's 99.999% fatal will routinely have survivors if the disease is common enough. A single data point doesn't mean a whole lot.
As I said elsewhere: I am not a single data point.
Further, I did not merely live. The hole in my lung closed and I have gradually but steadily reversed my symptoms over the course of more than a decade. Would you like to actually discuss it? I am pretty tired of being dismissed by people who assume I am not thorough but themselves fail to be thorough enough to read all existing remarks in the discussion before jumping up with the same tired criticisms I have heard before and addressed previously in this very discussion.
Maybe people wouldn't be so ready to dismiss you if you didn't lead off with such awful arguments for your position. You give an emotional story about your own personal improvement, then complain when, what, we don't read your mind and realize there's more? If you're thorough, show it. It's completely unreasonable to start off so weakly and then complain when people call you on it.
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.
"Further, I did not merely live. The hole in my lung closed and I have gradually but steadily reversed my symptoms over the course of more than a decade"
Again, with enough persons, these spontaneous remissions DO happen. With a source of one person, it would certainly appear a miracle.
Do you happen to have a summary of your story on the web somewhere? Not that you should feel obligated to share it, but if you have shared it before I would like to try to understand.
There isn't a summary because I get accused of having Munchausen Syndrome -- a sick need for attention -- rather than Cystic Fibrosis. It is quite dangerous to try to tell my story. It routinely results in public attacks, and moderators typically side with my attackers. You are welcome to email me if you wish to discuss it privately.
> 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.
I choose to ignore the idea that asteroids can destroy our planet by fatal, apocalyptic impact. The earth has not yet been hit by an asteroid. QED, asteroid impacts are a farce.
Correlation != causation. I'm happy you have lived through your medical problems. But you are a data point of n=1, and I'm sure there are plenty of people who have ignored solid medical advice and died because of it.
Lastly, "medicine" doesn't happily sentence anyone to death. Doctors and nurses are people too. People who got into their career to help other people. Do you think they become a doctor just to write death pronouncements?
First, I am not a single data point. My oldest son has the same diagnosis, my youngest son is a carrier and by living with me they were both exposed to the same germs. All three of us have gotten healthier together. Second, there are a handful of people who have listened to me and seen significant improvements. Most of them are unwilling to speak up publically. They just want to get better. They don't want to be subjected to the personal attacks I routinely endure. Third, everyone seeing better results than doctors predict for my deadly condition pretty much follow some of the same general principles I follow in some form or other, including looking to diet as a major means to address their health issues.
Last, doctor's routinely dismiss people with CF and write them off. It is a very deadly condition. Most doctor's make no real effort to get soneone with CF healthier. If you have spent no time in the CF community, let me suggest you have no idea what you are talking about.
A quote: "Cystic fibrosis is a disease passed down through families that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. It is a life-threatening disorder."
> My oldest son has the same diagnosis, my youngest son is a carrier and by living with me they were both exposed to the same germs.
They weren't exposed to the same "germs", they were both exposed to you. This is Munchausen by Proxy.
> ... doctor's routinely dismiss people with CF and write them off.
False, absolutely false. You were dismissed, not because you have CF, but because you're mentally ill.
> ... let me suggest you have no idea what you are talking about.
Which of us tried to claim that CF is transmitted by germs?
Mz may have been referring to the fact that CF patients often have chronically infected lungs, and share infections with each other when in close proximity.
I did not say CF is transmitted by germs. But infection is what kills people with CF. In other words, germs.
You are trying awfully hard here to peg me as a lunatic. It makes me wonder what your stake in this is. It is rather bizarre. Most people stop arguing with me at some point. If you really believe me to insane, why bother talking to me?
No. We are not in the time of Benjamin Rush. You have almost certainly read the Institute of Medicine's report on medical error. We know that we commit error and that we kill patients. We admit this. We need to do better and we seek evidence for how we can do so. We welcome outside help, and there is good money to be made by those who would participate.
Anyway, surely you know what we call alternative medicine that is supported by evidence: "medicine".