This Is MS Multiple Sclerosis Knowledge & Support Community

Here is a sixteen minute interview, in which the phrase "age of discovery" is used only once.



He goes over the need for patience so as not to rush into trials before the procedure is perfected. (Like testing a broken instrument.) Also I wasn't familiar with all the reasoning behind the idea that it takes fifty procedures to be an expert. Even after a hundred, they may still see things they've never seen before. Lots of variability to CCSVI....

I can't thank Dr. Sclafani enough -- I'm sending this wonderful "Age of Discovery" interview to every member of my family and to all of my friends.

Cece wrote: He goes over the need for patience so as not to rush into trials before the procedure is perfected.

What about rushing into selling the procedure to desperate individuals before the procedure is perfected? That's okay for the time being? Shouldn't people only be getting it done in a phase I trial or something?

concerned wrote:

Cece wrote: He goes over the need for patience so as not to rush into trials before the procedure is perfected.

What about rushing into selling the procedure to desperate individuals before the procedure is perfected? That's okay for the time being? Shouldn't people only be getting it done in a phase I trial or something?

Slow down concerned, I am responsible to such harsh comments ;)

@ concerned, I am wondering if you listened to the interview; Dr. Sclafani IS advising caution, he is not "selling the procedure to desperate individuals". Rather, he acknowledges the need to learn more in order to improve the procedure and its outcomes. As the procedure seems low-risk when compared to many other treatment options (such as DMDs, chemo etc.), why not proceed and learn about something that has the potential to improve so many lives? He does say "I think we have to have a healthy skepticism when something new happens".
But, he also says this:
"There's no question in my mind, or in my eyes, that I actually do see abnormalities in the veins of patients, mostly with multiple sclerosis, that I don't see in other disease processes, so there's something real in my view about the association..."
Coming from a specialist of his renown and experience, I take that statement as a very good reason to go down this path, and am grateful that he and other doctors have chosen to do so.

prairiegirl wrote:But, he also says this:
"There's no question in my mind, or in my eyes, that I actually do see abnormalities in the veins of patients, mostly with multiple sclerosis, that I don't see in other disease processes, so there's something real in my view about the association..."

Ever since he mentioned the importance of vision and sight in his line of work, do you notice all the references to seeing?

Concerned, directly to your point, he mentioned in the interview that when vaccines were first invented, they were not as good or as refined as they are now, but they were still useful even before perfected. Also the data on the procedures that he or any of the AAC doctors are doing will be going into an internal registry, along with follow-up data, which will with the approval of an IRB be published upon, so that is along the lines of a phase I trial?

I enjoyed the interview and think I like Dr. Sclafani even more now!

concerned wrote:

Cece wrote: He goes over the need for patience so as not to rush into trials before the procedure is perfected.

What about rushing into selling the procedure to desperate individuals before the procedure is perfected? That's okay for the time being? Shouldn't people only be getting it done in a phase I trial or something?

we do not need phase one trials for angioplasty of the jugular vein. that is nonsense fed to you by someone who appears to know nothing about venous angioplasty.

trials are not necessary to pick up nuances. there are differences but that does not mean going back to a crawl or going to some third world country to have this done. I cried when two patients on TIMS argued about whether patients in need after treatment in costa rica should be supported by their government. There is no time to ruminate about whether to act.

patients in this time of discovery are in essence supporting the discovery. No one else is. A phase one trial proves that the procedure is safe. This is already safe. we have been doing angioplasty of veins since 1982.

besides, i have been taught by patients that time is brain. and i am a good listener

AWESOME job Sal. Easy to understand, truthful as hell, and real....You deserve a tall mortadella with some gobbagoo Tony soprano style on rye.

THEGREEKFROMTHED wrote:AWESOME job Sal. Easy to understand, truthful as hell, and real....You deserve a tall mortadella with some gobbagoo Tony soprano style on rye.

a little feta on the side would go a long way

Nice video!!!! Nice post by you Dr. Sclafani in regards to concerned's post also!!! YOU ROCK!

concerned wrote:
Shouldn't people only be getting it done in a phase I trial or something?

drsclafani wrote: we do not need phase one trials for angioplasty of the jugular vein. that is nonsense fed to you by someone who appears to know nothing about venous angioplasty.

Well, you could note the "or something" as I am not a medical professional and I don't know all the subtle nuances of the terminology, however, I am trying to learn.

I just meant that in treating MS, it should be clearly demonstrated to the medical world at large that it is a viable MS treatment and enough to justify the hysteria and paranoia that has engulfed this grassroots movement. (If you want to argue that point I have treasure troves of messages insinuating that I'm an employee of a big pharma firm.)

Emotional pleas are all fine and dandy, but inadequate in satiating the desires of the scientific community, namely, a desire for proof. So please just clearly demonstrate it in a reputable journal how CCSVI causes or is a major co-morbidity factor in MS and how "Liberation" could alleviate MS symptoms and we can end all this suspense.

darn, darn double darn!! i've been trying to get the video of dr. sclafani to come up right ever since cece posted it. for some reason it keeps stuttering through and stopping and jamming. anyone else having that problem?

i'm sure i'm missing some good info.

i have to give dr. sclafani a lot of thanks and credit for sticking with us through all the obstacles put in front of him. he was ready to retire and then ccsvi got his attention and the rest is history.

i do have a question--when does the man sleep?

concerned wrote:

concerned wrote:
Shouldn't people only be getting it done in a phase I trial or something?

drsclafani wrote: we do not need phase one trials for angioplasty of the jugular vein. that is nonsense fed to you by someone who appears to know nothing about venous angioplasty.

Well, you could note the "or something" as I am not a medical professional and I don't know all the subtle nuances of the terminology, however, I am trying to learn.

I just meant that in treating MS, it should be clearly demonstrated to the medical world at large that it is a viable MS treatment and enough to justify the hysteria and paranoia that has engulfed this grassroots movement. (If you want to argue that point I have treasure troves of messages insinuating that I'm an employee of a big pharma firm.)

Emotional pleas are all fine and dandy, but inadequate in satiating the desires of the scientific community, namely, a desire for proof. So please just clearly demonstrate it in a reputable journal how CCSVI causes or is a major co-morbidity factor in MS and how "Liberation" could alleviate MS symptoms and we can end all this suspense.

I'm certain that there will be a plethora of papers published on CCSVI. However, if someone has a demonstrable problem with their veins, then why should they not be allowed to get them treated?

In addition, where is the "proof" that MS is an autoimmune disease? Nearly all of the journal articles that I've read over the years state that MS is believed to be of autoimmune origin. Moreover, the following statement was just published in a review paper in the journal Neurology...

[color=blue]Miravalle and Corboy[/color] wrote:Although MS is viewed by many to be an autoimmune disease, the evidence supporting this concept is elusive. There remains no evidence, for example, that Igs identified within the CSF of patients with MS are directed against any myelin proteins.

NHE

to Blossom,

Right click the video and disable "HD".

Perhaps your computer doesn't have a fast enough cpu/gpu to
handle High Definition video stream.


hope this helps