Kev
Senior Member
I placed this thread here because I felt the topic is applicable to all forms of treatment. It is a carry over of some posts I tossed into another thread, but I wanted it to be clear that the concern I feel is not directed at any one form of treatment, therapy, regimen... whether it be mainstream, alternative, dietary, holistic, whatever. OK, enough pre-amble. Now, a little back story. I heard a news report about a recent study that indicated that something some use to treat Crohns MAY double the risk of a certain form of cancer. I posted the info (in very lapse terms... the treatment doesn't apply to me.. and I neither had all the details NOR was I willing to trust my memory to provide them). It was more of an FYI, or heads up... to those who have considered this treatment or are actively trying it... to look into it further. Well, the response that the post did get set me back. It was like I was illuminating a dirty little secret that no one wanted illuminated. But, posting is fraught with mis-communication and even more mis-interpretation, so my feel is strictly subjective, and could be wrong. Someone posted a response that if the study was correct, and the odds of developing this cancer went from 0.04% to 0.08%, they were willing to take that risk. I understand that point of view. My response is... well, if you know ahead of time and take on the risk knowingly, that is a personal decision, and I've always held that we, and we alone, have the right to decide what options we will take, the risks we need to face, in fighting this disease; and no one has the right to second guess our choices. But the crucial thing is knowing, then deciding. I don't feel we do ourselves, or each other, or this forum; justice if we know things like that AND don't share the info. But, I don't mean to come across holier than thou.. or is it thee? I believe the response I got was more a case of the old number game. You know what I mean? Nations around the world are on the brink of total financial meltdown... because they've gone into debt in the order of billions, even trillions, and no one has stood up and said Enough!
Why? Well, there is a theory .. I think they call it the Law of Big Numbers.. that everyday people can't conceptualize numbers that big.. the human brain just can't concieve it. I used to work with numbers all the time. Big, small, plotting co-ordinates, RMS values, sigmas, medians, it was part of my work. And I came to realize that, just like big numbers, people can't fathom small ones either. How many ordinary folks play the lottery, despite the miniscule chance it will ever pay off. Tell them they are a dozen more times as likely to get hit by lightning than to hit the jackpot, it doesn't matter, it doesn't sink in. And, besides, it is only a small gamble. So, when someone counters that the risk of getting a cancer as a side effect only increases from 0.04% to 0.08% (and these may be the 'real' numbers, or just picked out of thin air as an example) I personally don't think those numbers meant anything more than the numbers on hitting a jackpot. It is simply too small for a typical person to conceptualize.
OK, so let me use some other numbers. Lets say there is this thing. We will call it 'X' for the moment (again, I'm not trying to single out any treatment). If you do 'X', then you run the risk of having this side effect. That risk ranges from 0.0033% to 0.005%. Sounds pretty remote, right? What are the odds it would effect anyone on here with Crohns if they did this 'X' thing? Well, that is the rub. These numbers, they represent the risk of developing Crohns. All of us with it have hit those odds... no matter how small they seem to appear. You see, numbers, just numbers, can fool us into a false sense of security. If I were to ask anyone with Crohns... if they knew what the 'X' was that gave them Crohns, AND could access a reliable form of time travel; if they would use the time machine to go back and keep their younger selves as far away from 'X' as possible. I know I would. I think everyone with Crohns would also.
So, in closing, please don't be fooled by small numbers. Please don't ignore them. If you have data, hard data, from a reliable source, about any possible risk associated with any treatment anyone here may be on or contemplating; please share that info. And if anyone tries to shut you up, say it even louder.
OK, time to put the soapbox away.
Why? Well, there is a theory .. I think they call it the Law of Big Numbers.. that everyday people can't conceptualize numbers that big.. the human brain just can't concieve it. I used to work with numbers all the time. Big, small, plotting co-ordinates, RMS values, sigmas, medians, it was part of my work. And I came to realize that, just like big numbers, people can't fathom small ones either. How many ordinary folks play the lottery, despite the miniscule chance it will ever pay off. Tell them they are a dozen more times as likely to get hit by lightning than to hit the jackpot, it doesn't matter, it doesn't sink in. And, besides, it is only a small gamble. So, when someone counters that the risk of getting a cancer as a side effect only increases from 0.04% to 0.08% (and these may be the 'real' numbers, or just picked out of thin air as an example) I personally don't think those numbers meant anything more than the numbers on hitting a jackpot. It is simply too small for a typical person to conceptualize.
OK, so let me use some other numbers. Lets say there is this thing. We will call it 'X' for the moment (again, I'm not trying to single out any treatment). If you do 'X', then you run the risk of having this side effect. That risk ranges from 0.0033% to 0.005%. Sounds pretty remote, right? What are the odds it would effect anyone on here with Crohns if they did this 'X' thing? Well, that is the rub. These numbers, they represent the risk of developing Crohns. All of us with it have hit those odds... no matter how small they seem to appear. You see, numbers, just numbers, can fool us into a false sense of security. If I were to ask anyone with Crohns... if they knew what the 'X' was that gave them Crohns, AND could access a reliable form of time travel; if they would use the time machine to go back and keep their younger selves as far away from 'X' as possible. I know I would. I think everyone with Crohns would also.
So, in closing, please don't be fooled by small numbers. Please don't ignore them. If you have data, hard data, from a reliable source, about any possible risk associated with any treatment anyone here may be on or contemplating; please share that info. And if anyone tries to shut you up, say it even louder.
OK, time to put the soapbox away.
