Skeptic Mentality
Thank you for saying that. You are right Jugular, if to some people CCSVI has become nothing more than some kind of movement science will not interest them.Jugular wrote:What some of the more sensible skeptics should realize that for a significant portion of MS patients, and many of those posting here, that CCSVI isn't so much a theorem to be debated, as it is a political movement and a patient revolt.For many, the information that's out there is proof enough and all these further studies are roadblocks and delays thrown down by the reactionary neurology-biased, drug-funded MS establishment.
To these individuals, your reasoned questions and desire for further studies are gum and muck under their feet. Don't stand in the doorways, don't block up the halls.
I have to admit, there's some attraction in that.
To others, acceptance of CCSVI is an article of science not faith and they'll debate you all you want, and thank-you for creating a polemic to deepen their knowledge.
Still you skeptics have to realize that skepticism will only take you so far. At some point continuous doubt and need for proof of everything results in opportunities, cures, life passing you by. At some point you have to make a reasoned choice and go with your best bet and try to make it work. And then learn from your mistakes and look for new opportunities.
Zamboni has shaken up the MS world. From such circumstances all sorts of possibilities, new angles, new light on tired ideas, arise for the bold and circumspect alike.
We are in desperate need of good skeptics.
I repeat what I said before and nobody except Lyon (well Lyon didn't provide a reasonable answer, just a joke) answered.
If you doubt the science, the results, the findings, whatever, please use the forum and go directly to Dr. Sclafani thread. Post your questions there. Don't waste your time (and other's time) making the point-counterpoint dance - wisely advised against in the rules of the board.
Posting the same questions (hey, they even post the same "negative" paper several times!) over and over again, distracts people and goes against the claimed well intentions of presenting "the other side" to new people, because it is just VERY cheap skepticism .
Well reasoned arguments will do far, far better than annoying mantras or jokes or posting lyrics of a song.
I repeat what I said before and nobody except Lyon (well Lyon didn't provide a reasonable answer, just a joke) answered.
If you doubt the science, the results, the findings, whatever, please use the forum and go directly to Dr. Sclafani thread. Post your questions there. Don't waste your time (and other's time) making the point-counterpoint dance - wisely advised against in the rules of the board.
Posting the same questions (hey, they even post the same "negative" paper several times!) over and over again, distracts people and goes against the claimed well intentions of presenting "the other side" to new people, because it is just VERY cheap skepticism .
Well reasoned arguments will do far, far better than annoying mantras or jokes or posting lyrics of a song.
-
CCSVIhusband
- Family Elder
- Posts: 475
- Joined: Sun Jun 27, 2010 2:00 pm
- Location: Pittsburgh, PA USA
- Contact:
fernando wrote:We are in desperate need of good skeptics.
I repeat what I said before and nobody except Lyon (well Lyon didn't provide a reasonable answer, just a joke) answered.
If you doubt the science, the results, the findings, whatever, please use the forum and go directly to Dr. Sclafani thread. Post your questions there. Don't waste your time (and other's time) making the point-counterpoint dance - wisely advised against in the rules of the board.
Posting the same questions (hey, they even post the same "negative" paper several times!) over and over again, distracts people and goes against the claimed well intentions of presenting "the other side" to new people, because it is just VERY cheap skepticism .
Well reasoned arguments will do far, far better than annoying mantras or jokes or posting lyrics of a song.
It's the circular logic ... and "it" (anything) will never be enough for some. There will never be enough proof, they'll want to know why some cases aren't helped, or say CCSVI isn't the panacea or the "cure" ... it is like the polio vaccine, it stops polio, but it's not a cure, so it's not the end of MS ...
Now they want to make it a "political movement" argument, to lead the conversation in a different direction because they can see what some are saying is true.
They pick and choose what they want, ignoring the rest.
When we have a doctor and answers available. One doctor isn't enough though, they want certain doctors ... and certain studies. They'd rather listen to a non-practicing blowhard named Colin Rose (who has no personal experience with CCSVI) ... than doctors who do. Dr.s like Sinan, Siskin, Zamboni, Sclafani, Dake, Hubbard (a neurologist who thinks CCSVI makes sense), Mehta, McDonald, Simka, Zivadnov (another neurologist), Lyduga et al, who are highly respected doctors in their profession. (I could name more who are heads of vascular surgery and interventional radiology at hospitals that would make you say "wow, THEY are practicing CCSVI liberation THERE" - but I'm not at liberty to do so on this board - be aware they are top hospitals in the world though - right here in the USA).
They pick and choose quotes from people who haven't had personal experience with CCSVI ... yet ignore the hundreds from TIMS (or thousands elsewhere) who have personal success stories resulting from liberation ... (Magoo, myself, CureIOUs, and so on). Go ahead, read blogs (healing happens by Mark Kalina - a doctor who was liberated in February) ... watch YouTube videos ... no they're fake though, anyone could "act" ... it must be placebo.
Like I've been saying, it's never going to be enough ... so I'm going to stop arguing with them ... we all see the same thing. They choose not to see it.
I agree science needs to be proven ... but when is science proven? When every last answer is obtained? (Like I said, we'll all be long gone when that happens) ... (again see the Polio vaccine analogy ... people don't spend billions on polio anymore, yet it's not cured ... so has science been answered enough for some? Yes! But not enough in general).
It's that simple ... but I'm sure we'll get more circular logic trying to show why I'm wrong (and you're wrong, and Dr. Sclafani is wrong) ...
and ... go ahead "skeptics" ...
The bit about it being a political movement resonated with me, I have my activist side.
Being sensitive or having thin skin isn't all about over-feeling any slights to myself, I'm also sensitive to the slights and the horrors that are happening to everyone else. We are on this journey but the boat is crowded and some people have fallen over the side. When I'm telling people, "If your symptoms come back, clotting is a possibility, it can go bad from here, get yourself checked with a ccsvi ultrasound, I cannot watch this," I'm trying to throw out the life preservers. And if someone from the shore warns, don't get on that boat, wait for a sturdier one, I think that is reasonable advice. But the shore has its dangers too.
For the political movement side, I think the objective should be to get intelligent research funded and underway as quickly as possible, and also to have the procedure available on a compassionate basis to those who want it (as jgkarob said, if progressing rapidly, his decision would be different), and quite importantly to have local care available after treatment for any complications that arise. And that the treatment itself meet some standards.
Raising awareness of CCSVI will bring in donations: Annette Funicello donated a large sum to Dr. Dake's study, a $10,000 donation came in to Dr. Siskin's study through Denise Manley's site just the other day. Pharma is not funding this and so far the NIH is not funding this. Dr. Sclafani talked about the paradigm shift in spleen trauma treatment (save it or cut it out?) and that it took years before people came around to his right way of doing it (save it) and that CCSVI will go faster because young gunshot victims had no one advocating for them.
Being sensitive or having thin skin isn't all about over-feeling any slights to myself, I'm also sensitive to the slights and the horrors that are happening to everyone else. We are on this journey but the boat is crowded and some people have fallen over the side. When I'm telling people, "If your symptoms come back, clotting is a possibility, it can go bad from here, get yourself checked with a ccsvi ultrasound, I cannot watch this," I'm trying to throw out the life preservers. And if someone from the shore warns, don't get on that boat, wait for a sturdier one, I think that is reasonable advice. But the shore has its dangers too.
For the political movement side, I think the objective should be to get intelligent research funded and underway as quickly as possible, and also to have the procedure available on a compassionate basis to those who want it (as jgkarob said, if progressing rapidly, his decision would be different), and quite importantly to have local care available after treatment for any complications that arise. And that the treatment itself meet some standards.
Raising awareness of CCSVI will bring in donations: Annette Funicello donated a large sum to Dr. Dake's study, a $10,000 donation came in to Dr. Siskin's study through Denise Manley's site just the other day. Pharma is not funding this and so far the NIH is not funding this. Dr. Sclafani talked about the paradigm shift in spleen trauma treatment (save it or cut it out?) and that it took years before people came around to his right way of doing it (save it) and that CCSVI will go faster because young gunshot victims had no one advocating for them.
This forum is to discuss CCSVI. I will be respectful of others, try to not to repeat myself(alhtough this only has been pointed out as a problem when something critical of CCSVI is stated,how many times have we heard about Colin Rose??), and remain mindful of the rules of this board. I WILL post when I have a new idea or thought and I will post it in the CCSVI forum if it relates to CCSVI.However I will attempt to start new threads so that, if you know what I write may upset you, please do not click on my post. Generally I believe most of us can have a decent discussion but unfortunately some of the members on here seem to go into a tailspin when there is anything critical of CCSVI posted. Lyon, concerned, Malden,etc. may I suggest not repsonding to the few on here that conitnue to rant and rave over any thought, idea, or question we may have relating to CCSVI. I have received numerous PM's from people who believe that CCSVI is the real deal supporting keeping this board neutral and keeping this a place of OPEN discussion. If I choose to post my questions to Dr. Scalfini I will do so but what I value is the discussion I have with the people on this board.CCSVIhusband wrote:fernando wrote:We are in desperate need of good skeptics.
I repeat what I said before and nobody except Lyon (well Lyon didn't provide a reasonable answer, just a joke) answered.
If you doubt the science, the results, the findings, whatever, please use the forum and go directly to Dr. Sclafani thread. Post your questions there. Don't waste your time (and other's time) making the point-counterpoint dance - wisely advised against in the rules of the board.
Posting the same questions (hey, they even post the same "negative" paper several times!) over and over again, distracts people and goes against the claimed well intentions of presenting "the other side" to new people, because it is just VERY cheap skepticism .
Well reasoned arguments will do far, far better than annoying mantras or jokes or posting lyrics of a song.
It's the circular logic ... and "it" (anything) will never be enough for some. There will never be enough proof, they'll want to know why some cases aren't helped, or say CCSVI isn't the panacea or the "cure" ... it is like the polio vaccine, it stops polio, but it's not a cure, so it's not the end of MS ...
Now they want to make it a "political movement" argument, to lead the conversation in a different direction because they can see what some are saying is true.
They pick and choose what they want, ignoring the rest.
When we have a doctor and answers available. One doctor isn't enough though, they want certain doctors ... and certain studies. They'd rather listen to a non-practicing blowhard named Colin Rose (who has no personal experience with CCSVI) ... than doctors who do. Dr.s like Sinan, Siskin, Zamboni, Sclafani, Dake, Hubbard (a neurologist who thinks CCSVI makes sense), Mehta, McDonald, Simka, Zivadnov (another neurologist), Lyduga et al, who are highly respected doctors in their profession. (I could name more who are heads of vascular surgery and interventional radiology at hospitals that would make you say "wow, THEY are practicing CCSVI liberation THERE" - but I'm not at liberty to do so on this board - be aware they are top hospitals in the world though - right here in the USA).
They pick and choose quotes from people who haven't had personal experience with CCSVI (see Lyon's quotes above from before he went to work) ... yet ignore the hundreds from TIMS (or thousands elsewhere) who have personal success stories resulting from liberation ... (Magoo, myself, CureIOUs, and so on). Go ahead, read blogs (healing happens by Mark Kalina - a doctor who was liberated in February) ... watch YouTube videos ... no they're fake though, anyone could "act" ... it must be placebo.
Like I've been saying, it's never going to be enough ... so I'm going to stop arguing with them ... we all see the same thing. They choose not to see it.
I agree science needs to be proven ... but when is science proven? When every last answer is obtained? (Like I said, we'll all be long gone when that happens) ... (again see the Polio vaccine analogy ... people don't spend billions on polio anymore, yet it's not cured ... so has science been answered enough for some? Yes! But not enough in general).
It's that simple ... but I'm sure we'll get more circular logic trying to show why I'm wrong (and you're wrong, and Dr. Sclafani is wrong) ...
and ... go ahead "skeptics" ...
-
concerned
Funny that Canada just pledged $58.8 million dollars for polio eradication.CCSVIhusband wrote: (again see the Polio vaccine analogy ... people don't spend billions on polio anymore, yet it's not cured ... so has science been answered enough for some? Yes! But not enough in general).
http://www.torontosun.com/news/canada/2 ... 06791.html
And Bill Gates too: ($250 million)
http://www.reuters.com/article/idUSTRE50K5YI20090121
If I post even a couple more stories about polio eradication we will be at the $1 billion mark rather quickly.
http://www.torontosun.com/life/healthan ... 73226.html
According to this article, $2.6 billion is needed for global polio eradication for the time period 2010-2012.
It also talks about why 99% reduction is not good enough without a cure because if we stop our efforts now, polio could make a comeback. So we need complete eradication or a cure, and neither have been achieved yet.
According to the Global Polio Eradication Initiative, $2.6 billion is needed to fight polio for the 2010 to 2012 period and there is currently a funding gap of $810 million.
Yes, if we do not bait each other and we do not rise to the bait, it might eliminate some of the fun (?) but it would be easier to get along. Both sides are guilty of both things.scorpion wrote:Lyon, concerned, Malden,etc. may I suggest not repsonding to the few on here that conitnue to rant and rave over any thought, idea, or question we may have relating to CCSVI.
I was feeling heated when I started that other thread, it helped to read everyone's opinions. Calmer heads prevailed, as they often do....
-
CCSVIhusband
- Family Elder
- Posts: 475
- Joined: Sun Jun 27, 2010 2:00 pm
- Location: Pittsburgh, PA USA
- Contact:
Steer the conversation away from the points I make about CCSVI ... good. Point proven.concerned wrote:Funny that Canada just pledged $58.8 million dollars for polio eradication.CCSVIhusband wrote: (again see the Polio vaccine analogy ... people don't spend billions on polio anymore, yet it's not cured ... so has science been answered enough for some? Yes! But not enough in general).
http://www.torontosun.com/news/canada/2 ... 06791.html
And Bill Gates too: ($250 million)
http://www.reuters.com/article/idUSTRE50K5YI20090121
If I post even a couple more stories about polio eradication we will be at the $1 billion mark rather quickly.
http://www.torontosun.com/life/healthan ... 73226.html
According to this article, $2.6 billion is needed for global polio eradication for the time period 2010-2012.
It also talks about why 99% reduction is not good enough without a cure because if we stop our efforts now, polio could make a comeback. So we need complete eradication or a cure, and neither have been achieved yet.
According to the Global Polio Eradication Initiative, $2.6 billion is needed to fight polio for the 2010 to 2012 period and there is currently a funding gap of $810 million.
-
concerned
Or maybe we should go with Gordon's recommendationCece wrote: I was feeling heated when I started that other thread, it helped to read everyone's opinions. Calmer heads prevailed, as they often do....
(http://www.thisisms.com/ftopict-14515.html),
and don refrigerated toques to let cooler heads prevail.
-
prairiegirl
- Family Elder
- Posts: 228
- Joined: Fri Feb 05, 2010 3:00 pm
-
prairiegirl
- Family Elder
- Posts: 228
- Joined: Fri Feb 05, 2010 3:00 pm
.