Let them eat cake! - Page 12

glatt · 12-07-2006, 04:23 PM

9th, you are fulfilling rkzenrage's prophecy that he will be turned on next after Mari. You're making him more nervous.

12-07-2006, 04:39 PM

9th, explain to me why anyone needs to show that they are, actually, sick? There is nothing "out of whack" about any of my statements.
I have a low opinion of you based on your actions in this forum, long before this thread.
You are showing that what I stated about what was to happen to anyone discussing their illness is true.

DanaC · 12-07-2006, 05:12 PM

The last acceptable prejudice. I think that's very well put.

12-07-2006, 05:40 PM

I don't care id you believe me, I have a genetic disorder, one that causes a all of what is wrong with me, as well as having caused some birth defects. I know what is wrong with me and how many times I have had it checked and by how many specialists.
I also know what the odds were, that is why it has no name, yet.
This is why I did not want to discuss this and why I am done with this thread.
I hope you are going to be in a lab and not actually working with sick individuals... I really do.

DanaC · 12-07-2006, 05:45 PM

I bet the first person to have any genetic condition that causes disparate symptoms (and there are many such) has been treated to the same skepticism. Everyone needs precedence as proof. Bit of a problem if you are the one setting that precedent.

lumberjim · 12-07-2006, 05:52 PM

let's call it Rage's syndrome.

9th Engineer · 12-07-2006, 06:08 PM

I just want to see the science, nothing more. If there hasn't been studies on this then how does he even know it's genetic? He's never mentioned a medical background, and even if a specialist told him it might be genetic they would need to preform tests under controlled conditions to confirm that, which would almost certainly lead to followup studies and publications in the event of a new genetic disorder. Why is it that everyone screams that nothing which science can't or hasn't proved is real, until something like this happens?
Now who's the one looking sideways at someone and saying "He want's proof?? Why can't he just understand that he needs to believe and not ask too many questions?"

12-07-2006, 08:16 PM

Quote:

Originally Posted by 9th Engineer

I just want to see the science, nothing more. If there hasn't been studies on this then how does he even know it's genetic? He's never mentioned a medical background, and even if a specialist told him it might be genetic they would need to preform tests under controlled conditions to confirm that, which would almost certainly lead to followup studies and publications in the event of a new genetic disorder. Why is it that everyone screams that nothing which science can't or hasn't proved is real, until something like this happens?
Now who's the one looking sideways at someone and saying "He want's proof?? Why can't he just understand that he needs to believe and not ask too many questions?"

Excuse me, but I have yet ti get a reply from you to my pm where I offered to send you a bibliography of medical publications regarding the effects of carbon monoxide poisoning. I don't think you want the science, I think you want to revel in your prejudice. Tell me what scientific coursework you are now taking. Molecular genetics? Cell biology? Human physiology? Embryology? Organic chemistry? You seem ignorant in all these areas. You also seem extremely ignorant of the scientific method.

A person with an extremely rare genetic disorder goes into his family doc. The doctor flounders around and refers you to a specialist. The specialist suspects a genetic disorder, but there's nothing in the literature. Now, if that specialist is affiliated with a University medical program and has the time and interest, he may apply for a government grant to find out more about this disease. But congress has just cut research funding in favor of killing people in Iraq. Three years later, the scientist gets the funding to begin his study. He then has to find a statistically acceptable number of patients with the same symptoms. Once he's done that, he and his grad students have to do research involving a double blind study that will be acceptable to a scientific, peer reviewed journal such as JAMA.
JAMA accepts the paper for publication and it comes out 6 months later. The government finally adds the condition to its list of disabling conditions 5 years later.

Meanwhile, RK has lost everything he has, is sicker than ever, and living on the streets. (God forbid).

Wake up 9th, I don't know who you are, but you are neither a scientist, nor are you living in the real world.

orthodoc · 12-07-2006, 08:36 PM

Quote:

Originally Posted by marichiko

snip You also seem extremely ignorant of the scientific method. snip

snip He then has to find a statistically acceptable number of patients with the same symptoms. Once he's done that, he and his grad students have to do research involving a double blind study that will be acceptable to a scientific, peer reviewed journal such as JAMA.
JAMA accepts the paper for publication and it comes out 6 months later. The government finally adds the condition to its list of disabling conditions 5 years later.

Marichiko, I believe you stated you were a librarian? For thirty years? How current is your molecular biology? There could be more than one reason that people are not racing to consult you on scientific matters.

Case reports are written on patients with very rare diseases; there is no need to find an 'acceptable number of patients with the same symptoms' before reporting something new. Clinical studies are structured in different ways. While the double blind prospective study is the gold standard, not everything can be studied that way. There are many other study types that are acceptable to peer-reviewed journals.

Your summary of how the research world works is out in left field. A little less posturing on what constitutes a 'scientist' or the 'scientific method' would become you better.

DanaC · 12-07-2006, 06:02 PM

What I find really disheartening about this whole discussion, is that I really did think that America was way ahead of the Uk on disablement issues. Not in terms of financial assistance, but in terms of general attitudes and understandings. I've been quite...taken aback by some of the general assumptions displayed here. I can only hope and assume that it's no more representative of American culture than some of the prejudices displayed by Brits here are representative of our culture.

DanaC · 12-07-2006, 06:14 PM

Hmm,

Lessee...Gays *tick*, Arabs *tick*, People with disability *tick*, the poor *tick*.....hey, 9th, have you done blacks, women and the Irish yet? I think you may be looking at a full house.

9th Engineer · 12-07-2006, 07:01 PM

I've said nothing about whether he is in pain or not, I can't say anything about that one way or the other. What I can dispute is whether he's right in saying he has a genetic condition that has no name, or whether he's in pain and his doctor doesn't know why.
Really, if doctors can't find what's causing the problem, then how can he make such detailed conclusions? And why can't I look at the information if it's in public health journals??

Aliantha · 12-07-2006, 07:24 PM

My older brother died when he was 5, I was three. He died of a genetic disorder. My cousin has it but is still alive. They think it might be Noonans disorder or Chromosone X, but they're not really sure. Whatever the problem is, their symptoms are very similar, but not exactly the same. They can't name it really, but it causes severe intellectual disablement along with physical disabilities - severe enough to kill a child at 5 yrs of age.

9th, you're being incredibly short sighted and rude. Think about things before you go posting them. You don't know shit about what you're saying. That's clear to everyone here.

orthodoc · 12-07-2006, 08:26 PM

Aliantha's description is typical of a chromosomal disorder. Rkzen's description, per his post, does not fit the pattern of these disorders. Note: I am saying nothing about his symptoms, nor his disability, and I am not stating that he does not have a rare disorder that has never been seen before and has no name, and which is written up in medical texts and journals that he declines to cite. Rkzen listed several things as part of his medical condition, said they were part of a genetic disorder that is so rare as to have no name, and then declined to give any further information. That is his prerogative. I am sure he does know what he has.

Aliantha · 12-07-2006, 08:28 PM

And like everyone else, he has a right to his own privacy.

12-07-2006, 05:52 PM	#6
lumberjim I can hear my ears Join Date: Oct 2003 Posts: 25,571	let's call it Rage's syndrome. __________________ This body holding me reminds me of my own mortality Embrace this moment, remember We are eternal, all this pain is an illusion ~MJKeenan

12-07-2006, 06:08 PM	#7
9th Engineer Bioengineer and aspiring lawer Join Date: Apr 2006 Location: Pittsburgh Posts: 872	I just want to see the science, nothing more. If there hasn't been studies on this then how does he even know it's genetic? He's never mentioned a medical background, and even if a specialist told him it might be genetic they would need to preform tests under controlled conditions to confirm that, which would almost certainly lead to followup studies and publications in the event of a new genetic disorder. Why is it that everyone screams that nothing which science can't or hasn't proved is real, until something like this happens? Now who's the one looking sideways at someone and saying "He want's proof?? Why can't he just understand that he needs to believe and not ask too many questions?" __________________ The most valuable renewable resource is stupidity.

12-07-2006, 06:02 PM	#10
DanaC We have to go back, Kate! Join Date: Apr 2004 Location: Yorkshire Posts: 25,964	What I find really disheartening about this whole discussion, is that I really did think that America was way ahead of the Uk on disablement issues. Not in terms of financial assistance, but in terms of general attitudes and understandings. I've been quite...taken aback by some of the general assumptions displayed here. I can only hope and assume that it's no more representative of American culture than some of the prejudices displayed by Brits here are representative of our culture. Last edited by DanaC; 12-07-2006 at 06:06 PM.

12-07-2006, 07:01 PM	#12
9th Engineer Bioengineer and aspiring lawer Join Date: Apr 2006 Location: Pittsburgh Posts: 872	I've said nothing about whether he is in pain or not, I can't say anything about that one way or the other. What I can dispute is whether he's right in saying he has a genetic condition that has no name, or whether he's in pain and his doctor doesn't know why. Really, if doctors can't find what's causing the problem, then how can he make such detailed conclusions? And why can't I look at the information if it's in public health journals?? __________________ The most valuable renewable resource is stupidity.

12-07-2006, 07:24 PM	#13
Aliantha trying hard to be a better person Join Date: Jan 2006 Location: Brisbane, Australia Posts: 16,493	My older brother died when he was 5, I was three. He died of a genetic disorder. My cousin has it but is still alive. They think it might be Noonans disorder or Chromosone X, but they're not really sure. Whatever the problem is, their symptoms are very similar, but not exactly the same. They can't name it really, but it causes severe intellectual disablement along with physical disabilities - severe enough to kill a child at 5 yrs of age. 9th, you're being incredibly short sighted and rude. Think about things before you go posting them. You don't know shit about what you're saying. That's clear to everyone here. __________________ Kind words are the music of the world. F. W. Faber

12-07-2006, 04:23 PM	#1
glatt ™ Join Date: Jul 2003 Location: Arlington, VA Posts: 27,717	9th, you are fulfilling rkzenrage's prophecy that he will be turned on next after Mari. You're making him more nervous.

12-07-2006, 04:39 PM	#2
rkzenrage Guest Posts: n/a	9th, explain to me why anyone needs to show that they are, actually, sick? There is nothing "out of whack" about any of my statements. I have a low opinion of you based on your actions in this forum, long before this thread. You are showing that what I stated about what was to happen to anyone discussing their illness is true.

12-07-2006, 05:12 PM	#3
DanaC We have to go back, Kate! Join Date: Apr 2004 Location: Yorkshire Posts: 25,964	The last acceptable prejudice. I think that's very well put.

12-07-2006, 05:40 PM	#4
rkzenrage Guest Posts: n/a	I don't care id you believe me, I have a genetic disorder, one that causes a all of what is wrong with me, as well as having caused some birth defects. I know what is wrong with me and how many times I have had it checked and by how many specialists. I also know what the odds were, that is why it has no name, yet. This is why I did not want to discuss this and why I am done with this thread. I hope you are going to be in a lab and not actually working with sick individuals... I really do.

12-07-2006, 05:45 PM	#5
DanaC We have to go back, Kate! Join Date: Apr 2004 Location: Yorkshire Posts: 25,964	I bet the first person to have any genetic condition that causes disparate symptoms (and there are many such) has been treated to the same skepticism. Everyone needs precedence as proof. Bit of a problem if you are the one setting that precedent.

12-07-2006, 06:14 PM	#11
DanaC We have to go back, Kate! Join Date: Apr 2004 Location: Yorkshire Posts: 25,964	Hmm, Lessee...Gays tick, Arabs tick, People with disability tick, the poor tick.....hey, 9th, have you done blacks, women and the Irish yet? I think you may be looking at a full house.

12-07-2006, 08:26 PM	#14
orthodoc Not Suspicious, Merely Canadian Join Date: Oct 2006 Posts: 3,774	Aliantha's description is typical of a chromosomal disorder. Rkzen's description, per his post, does not fit the pattern of these disorders. Note: I am saying nothing about his symptoms, nor his disability, and I am not stating that he does not have a rare disorder that has never been seen before and has no name, and which is written up in medical texts and journals that he declines to cite. Rkzen listed several things as part of his medical condition, said they were part of a genetic disorder that is so rare as to have no name, and then declined to give any further information. That is his prerogative. I am sure he does know what he has. __________________ The greatness of a nation and its moral progress can be judged by the way its animals are treated. - Ghandi

12-07-2006, 08:28 PM	#15
Aliantha trying hard to be a better person Join Date: Jan 2006 Location: Brisbane, Australia Posts: 16,493	And like everyone else, he has a right to his own privacy. __________________ Kind words are the music of the world. F. W. Faber

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