I know "medicine" happily sentenced me to death. I declined its offer. I lived.
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.
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.
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.
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.
Thank you for replying.
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.
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.
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.
The advice to post a scientific description instead of an emotional one is never misplaced.
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.
Thank you for replying though.
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:
http://arachnoid.com/trouble_with_psychology
Where's yours? And do you think you have the right to claim unjust treatment if you haven't ever clearly explained your case?
> Finding a meeting ground is challenging, and most people make no attempt to meet me halfway.
No, and I can see why -- if someone tries to meet you halfway, you move the goal posts, then complain about how badly you've been treated.
But thank you for replying.
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.
Get professional help.
Again, what evidence do you want? You won't answer that. You are too busy engaging in ad hominems.
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.
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.
Catch you later.
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:
My free Sage tutorial:
> ... who feel personally threatened by my views.
You very clearly have no idea how you come across.
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.
False. One will do nicely. But you're not it.
Your inability to comment on the computer science links I provided hasn't escaped my attention or that of anyone else.
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.
By scientists in a science/technology forum that has no connection whatever to health or medicine? What did you expect?
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.
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.
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.
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.
Unfortunately, no, no publication is interested.
Are you intent on advertising your ignorance? Of course purely genetic ailments are progressive.
http://lifestyle.iloveindia.com/lounge/genetic-diseases-2505...
Appearance of the word "progressive" in the above list: eight. Time required: ten seconds.
More examples:
http://www.steadyhealth.com/articles/Huntington_s_Disease__P...
http://news.softpedia.com/newsTag/progressive+genetic+disord...
http://www.ncbi.nlm.nih.gov/pubmed/15946126 (title: Progressive familial intrahepatic cholestasis: genetic disorders of biliary transporters)
http://medical-dictionary.thefreedictionary.com/adrenoleukod...
http://www.medicalhomeportal.org/issue/slowly-progressive-di... (links between "progressive" and "genetic": seven)
http://www.thefreedictionary.com/muscular+dystrophy
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.
Again, with enough persons, these spontaneous remissions DO happen. With a source of one person, it would certainly appear a miracle.
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.
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?
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.
Here are the direct links if you need them again:
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 =)
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.
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:
http://arachnoid.com/trouble_with_psychology
> I wish it were not so.
It is not so. Get over yourself.
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 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.
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.
But thank you for replying.
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?
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.
You most certainly are. Cystic Fibrosis is not a communicable disease caused by germs, it is a genetically linked ailment.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001167/
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?
http://en.wikipedia.org/wiki/Cystic_fibrosis#Chronic_infecti...
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?
If you really believe you have a medical case to make, why are you posting in a computer science forum? What's wrong with:
http://www.reddit.com/r/medicine
> Most people stop arguing with me at some point.
Yes, and I can see why -- you're inaccessible to reason.