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cece - you may find it interesting to read my post .... on the general discussion forum titled "" Chivalry "" . It is about 2 years old ...... but well worth reading .
This webpage attracts people from all walks of life . Including those looking to trick people into sending them money.
I stand by my comments . Call me what you want.
As for your comments about you '' over posting '' or whatever .... I think you were / are doing Dr. S a service by answering his mail
Dr. S - a valuable TIMS poster - gets asked lot's of repeat questions that I'm sure wear him down. Your ability to research his reply's to previously asked questions ...... is helpful .
jgkarob wrote:Moitas grazas, o muchisimas gracias, hay muchos gallegos en Argentina.
Me encanta mi vida aqui. ¡Galicia para siempre¡
Pero me refería a que no te vayas del foro. Hay mucha discusión que a veces se vuelve un poco tensa, pero es bueno participar y preguntar.
Un abrazo galego.
Lo mismo...
Hay ignorantes aqui, pero, hay maestros tambien. No a leer los ignorantes, tienen miedo, o son enojado de algo... Quien sabe? Hay cambio aqui, talves cambio esta mejor? No mi pienso.
MrSuccess wrote:cece - you may find it interesting to read my post .... on the general discussion forum titled "" Chivalry "" . It is about 2 years old ...... but well worth reading .
This webpage attracts people from all walks of life . Including those looking to trick people into sending them money.
I stand by my comments . Call me what you want.
As for your comments about you '' over posting '' or whatever .... I think you were / are doing Dr. S a service by answering his mail
Dr. S - a valuable TIMS poster - gets asked lot's of repeat questions that I'm sure wear him down. Your ability to research his reply's to previously asked questions ...... is helpful .
Mr. Success
As I said before this is an open forum and you can post WHAT and however often you want. Hope nobody told you otherwise.
I think the skeptic board is the place to bring this up?? I was just reading a post on "tongue stimulation" and I saw Montel has put his support behind this therapy. In the post someone claims the reason Montel has not embraced CCSVI is basically because the MS Society and drug companies have gotten to him and that he has much to lose if he were to "jump the CCSVI bandwagon". A couple of things. First of all I seriously doubt if Montel is hurting for money so I would doubt that is a serious consideration for him. Second of all it is ashame that people continue to imply that someone with MS would not want a treatment to succeed for whatever reason. If I remember Montel suffers daily from a severe burning sensation from the waist down. It is amazing how we are losing empathy and a sense of a common cause among us because of CCSVI. It is interesting, from the beginning, how people identified the CCSVI researchers as "tireless beacons of hope" fighting to "liberate" people with MS from the chains of their disease and everyone else as money hungry capitalists. So whose side are you on, right? The liberators who have come to rescue you from your days of pain or the oppressors who want people with MS to remain living with the burden of their disease so that they may continue to make a profit and control the MS market. What imagery. I say bull puckey. There are just as many crooked people amongst the CCSVI researchers as there are among pharmas reps., neuros, etc. Please quit idealizing eveything that surronds CCSVI because the only thing that it has accomplished is to polarize peopel all fighting for the same cause, a cure for MS.
scorpion wrote:Please quit idealizing eveything that surronds CCSVI because the only thing that it has accomplished is to polarize peopel all fighting for the same cause, a cure for MS.
"Our doctors are all heroes" ? (That is me quoting myself there....)
I think it took guts to get into CCSVI when it went counter to everything that everyone understood about cerebral drainage ("the blood will find its way out") and MS, the autoimmune disease.
Here's a few things I don't understand. A lot is based in the fact that many people really only deal well with black or white, and they don't know what to do with uncertainty or shades of gray. And they don't understand numbers and statistics (not directing this towards anybody in particular, just general human nature).
Nobody at this point can say that CCSVI is THE answer or that the current treatment for CCSVI is THE cure for MS. But, nobody can say that everyone who takes copaxone or betaseron or any DMD will benefit. As a matter of fact, the reduction is relapse rate is not that high. It's something like 30% reduction for most of the drugs? Yet these are lauded as "disease modifying". We are also dealing with the same mentality and establishment that looks at Tysabri and its benefits, and seemingly ignores the number of people who have died or get seriously ill, and will then tell someone that angioplasty is "experimental". None of these drugs is the definitive answer, and we know and accept that (FYI, I was on copaxone for 5+ years).
As for Zamboni's discoveries, and the ongoing work by doctors/researchers like Dake, Haacke, Siskin, Sclafani, as well as the many doctors in Europe working on CCSVI), it seems things are moving really fast. Look at the changes in treatment philosophy with balloon size, treatment of the azygous, the looking at valve function, etc, that have already occurred in a year's timeframe! We are at the forefront of scientific discovery and nobody has all the answers yet. Many people are benefitting from the treatment, and some are not. Statistically, from what I've seen, the numbers are very positive from the macro view (which doesn't make someone it doesn't work for feel better). I can only imagine how much more knowledge will be gained across the next few years as the valid research piles up. A lot will be learned. Maybe there is still something missing in this whole puzzle that answers why some don't appear to respond. Anybody undergoing the procedure now is a pioneer. The procedure itself isn't experimental, but the connection to MS and all the other relationships make it pioneering. And really, when you listen to these pioneering (and very well respected in their fields) doctors, they all do bring the necessary scientific caution, although they have seen enough to believe in their hypothesis. They DO all believe they also need the science to show it.
My question to the "skeptics" is, are you open to what the ongoing research may bring, or are you beholden to some other belief? Even knowing someone it did not work for does not invalidate the theory. (That reminds me of how people say "Well, we didn't use car seats when we were young and we survived"... you can't look at any individual data point in isolation as proof of anything, really.). Is the argument that you just think it's a bunch of bunk, or you want to be able to ask questions and see where things go before jumping on the bandwagon, so to speak?
My one other thing... people who "don't respond"... we don't even really fully know what that means. I guess for me, first and foremost, if there is the connection to MS that some are theorizing, even if someone doesn't see a response, they may see a positive impact on disease progression. Maybe not. But hopefully the tracking studies will show how this goes. I know my thinking is that there are still pieces to this puzzle that will be found (I even look at how the azygous is viewed, and how some doctors initially weren't seeing the flow issues because they weren't looking for it in the right way).
I apologize for the babbling nature of this post. I really do want to understand the logic behind the skeptics. Pointing to flawed studies that can obviously be shown to have been done wrong or the data analyzed wrong doesn't work for me (and that kind of research exists all the time, even in peer-reviewed journals, and you can see when "discredited" research is pointed out in articles). To me, some of the "negative" research has come across so rushed, so flawed, so agenda-filled, all by people who seem hell bent on proving something, they sometimes even interpret their own data incorrectly - like the one that Zamboni just responded to. Do the skeptics expect 100% of people to respond? Do they not want to believe? Or just insulted that they aren't allowed to question, and they will be more than willing to "buy in" when the research is more copious and conclusive? I'm willing to say that IF (big IF) there is a plethora of valid research that shoots down or explains this away, by all means I'll buy. I also just want the "truth". I currently just happen to agree with the science showing that there is something big in CCSVI.
Obviously if conclusive evidence came out I would change my position. My current position is that I think that we just don't know. And that there's all kinds of people jumping on this to make all kinds of money off of medical tourism, without any kind of concrete proof of the theory, then that kind of really scares me.
Sometimes I wonder if the people who answer "Go for it, you'll never regret it" when people with no money ask if they should try to get a bank loan they'll never be able to pay back to fly to Poland and be "Liberated" aren't just shills for euromedic and whatnot lurking around the internet to get customers.
You can say we point to flawed studies, but isn't it possible that Zamboni's study was flawed? (I think that's what a lot of people in the medical community are saying.)
(Sorry if this is incoherent, I'm in a rush to get to band practice.)
CenterOfGravity wrote:Here's a few things I don't understand. A lot is based in the fact that many people really only deal well with black or white, and they don't know what to do with uncertainty or shades of gray. And they don't understand numbers and statistics (not directing this towards anybody in particular, just general human nature).
Nobody at this point can say that CCSVI is THE answer or that the current treatment for CCSVI is THE cure for MS. But, nobody can say that everyone who takes copaxone or betaseron or any DMD will benefit. agree As a matter of fact, the reduction is relapse rate is not that high. It's something like 30% reduction for most of the drugs? Yet these are lauded as "disease modifying". We are also dealing with the same mentality and establishment that looks at Tysabri and its benefits, and seemingly ignores the number of people who have died or get seriously ill, and will then tell someone that angioplasty is "experimental". The number of people who have died has not been ignored. It is simple a matter of risk vs. benefit and so far, veified by clinical studies, Tysarbi has been show to besomewhat effective againstMS. None of these drugs is the definitive answer, and we know and accept that (FYI, I was on copaxone for 5+ years). agree
As for Zamboni's discoveries, and the ongoing work by doctors/researchers like Dake, Haacke, Siskin, Sclafani, as well as the many doctors in Europe working on CCSVI), it seems things are moving really fast. Look at the changes in treatment philosophy with balloon size, treatment of the azygous, the looking at valve function, etc, that have already occurred in a year's timeframe! We are at the forefront of scientific discovery and nobody has all the answers yet. Many people are benefitting from the treatment, and some are not. Statistically, from what I've seen, the numbers are very positive from the macro view (which doesn't make someone it doesn't work for feel better). I can only imagine how much more knowledge will be gained across the next few years as the valid research piles up. A lot will be learned. Maybe there is still something missing in this whole puzzle that answers why some don't appear to respond. Anybody undergoing the procedure now is a pioneer. The procedure itself isn't experimental, but the connection to MS and all the other relationships make it pioneering. And really, when you listen to these pioneering (and very well respected in their fields) doctors, they all do bring the necessary scientific caution, although they have seen enough to believe in their hypothesis. They DO all believe they also need the science to show it.
My question to the "skeptics" is, are you open to what the ongoing research may bring, or are you beholden to some other belief? of course Even knowing someone it did not work for does not invalidate the theory. agree (That reminds me of how people say "Well, we didn't use car seats when we were young and we survived"... you can't look at any individual data point in isolation as proof of anything, really.). Is the argument that you just think it's a bunch of bunk, or you want to be able to ask questions and see where things go before jumping on the bandwagon, so to speak?
My one other thing... people who "don't respond"... we don't even really fully know what that means. I guess for me, first and foremost, if there is the connection to MS that some are theorizing, even if someone doesn't see a response, they may see a positive impact on disease progression. Maybe not. But hopefully the tracking studies will show how this goes. I know my thinking is that there are still pieces to this puzzle that will be found (I even look at how the azygous is viewed, and how some doctors initially weren't seeing the flow issues because they weren't looking for it in the right way).
I apologize for the babbling nature of this post. good questions I really do want to understand the logic behind the skeptics. Pointing to flawed studies that can obviously be shown to have been done wrong or the data analyzed wrong doesn't work for me (and that kind of research exists all the time, even in peer-reviewed journals, and you can see when "discredited" research is pointed out in articles). My problem is EVERY study that does not show positive results is deemed fllawed To me, some of the "negative" research has come across so rushed, so flawed, so agenda-filled, all by people who seem hell bent on proving something, they sometimes even interpret their own data incorrectly(AND THIS IS ONLY TRUE OF THE STUDIES NOT VALIDATING CCSVI?) - like the one that Zamboni just responded to. Do the skeptics expect 100% of people to respond?That is what we were told in the beginning. Remember EVERYONE Zamboni treated had some sort of improvement or no progression. Do they not want to believe? Or just insulted that they aren't allowed to question, and they will be more than willing to "buy in" when the research is more copious and conclusive? You just sumed it up! I'm willing to say that IF (big IF) there is a plethora of valid research that shoots down or explains this away, by all means I'll buy. I also just want the "truth". I currently just happen to agree with the science showing that there is something big in CCSVI.
Just try to talk about any type of placebo effect and it is like you just said god does not exist.
scorpion, I think in a way we both have issues with anyone who only sees things in black and white. For the skeptics, any of the 100% "CCSVI IS THE ONE AND ONLY GREATEST ANSWER" is like the "CCSVI IS TOTAL BUNK AND YOU PEOPLE ARE GULLIBLE IDIOTS" is to someone who feels strongly about the validity of the CCSVI theories. The gray area in the middle is big. Now I lean towards agreeing with the science thus far, and I'm excited to see what these studies that are being undertaken now will show.
As for seeing much of the anti-ccsvi research as flawed, I think it's just that there seems to be a vehement component to them NEEDING the theories to be wrong, whereas the ones who have come on board to support Zamboni's theories did so after seeing and witnessing the phenomena, and want science to see if it's true. We'll see, with these things it's always a game of back and forth, and the great thing with science, usually over time, science wins.
I do agree about the medical tourism, but it's like an necessary evil. I don't think all of the doctors who are treating people who travel are in it for the wrong reasons, some really may genuinely want to help. But just like there really are those neurologists who are beholden to their big pharma research money, there will be doctors who are looking to make a buck (be it this, plastic surgery, or a whole host of other things).
My MS is rather tame compared to others, so as much as I believe in the theories and I'm watching all of this stuff, I am waiting until there is more research before I jump in and do it (moreso about the best ways to treat for lower re-stenosis rates, like bigger balloons, etc). I'm diagnosed 16 years and after diagnosis I had about 7 flareups requiring IV steroids in 10 years (mostly optic neuritis and diplopia, one or both eyes), and although the past 5-6 years has been quiet, I have some lingering fatigue, tingly hands, etc. I'd love to be able to help the fatigue and some of the cog fog I occasionally get, but given the mild nature of my symptoms, I don't even know if treating me would help with the tracking (my EDSS is too low).
Anyhow, I do wish the "debate" could be more civil on both sides, and I'm hoping to add to that with my participation here.
Everyone can talk about anything, but adequate evidence should be provided to support their claims. Is it a "pro-CCSVI's camp's" fault that the german study found indication for diminished brain drainage?
No, I have neither time nor motivation to argue with you. Just a clarification: You said something about angioplasty. AFAIK, it is being performed with balloons some 40 years now. Nothing really new. You can't compare it to Tysabri. What will happen to Ty user's after 20 years? Can anyone answer? Nope!
Don't confuse CCSVI with MS. Scientifically speaking, it does not exist as a condition.
And the death was caused by blood thinners, which have been trialed and are FDA approved.
Skepticism is great when good arguments are provided.
CenterOfGravity wrote: A lot is based in the fact that many people really only deal well with black or white, and they don't know what to do with uncertainty or shades of gray.
Great post, CenterofGravity. I don't subscribe to that whole "us" vs "them" mentality. Are we not all skeptics at certain times, believers at others and sometimes on the fence? CCSVI is not that simple, and neither are we (I hope!). I don't place myself in any group here; I just want to read, learn and occasionally contribute.
@ Scorpion, I agree that we are all fighting "for the same cause, a cure for MS". However, your statement that the only thing that CCSVI has accomplished is to polarize people.... well, there may be more than a few successfully treated patients and some doctors and researchers who have seen great results who would challenge you on that one!
And concerned, I agree that people should be wary of some of the medical tourism and exercise a great deal of caution in decision-making regarding treatment.
CenterOfGravity wrote: A lot is based in the fact that many people really only deal well with black or white, and they don't know what to do with uncertainty or shades of gray.
Great post, CenterofGravity. I don't subscribe to that whole "us" vs "them" mentality. Are we not all skeptics at certain times, believers at others and sometimes on the fence? CCSVI is not that simple, and neither are we (I hope!). I don't place myself in any group here; I just want to read, learn and occasionally contribute.
@ Scorpion, I agree that we are all fighting "for the same cause, a cure for MS". However, your statement that the only thing that CCSVI has accomplished is to polarize people.... well, there may be more than a few successfully treated patients and some doctors and researchers who have seen great results who would challenge you on that one!
And concerned, I agree that people should be wary of some of the medical tourism and exercise a great deal of caution in decision-making regarding treatment.
Actually I said the only thing that idealizing CCSVO does is polarize people.
