Dr Freedman: CCSVI no less than a cult

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby scorpion » Wed Dec 08, 2010 5:15 am

Where is the empirical data that shows grape seed extract has any effect at all on MS?? 90 % of people treated have "undoubted" CCSVI? Please show me the empirical data you found that support these statements Dr. Embry.Furthermore I highly doubt any drug company could give two cents about CCSVI at this point. Everyone loves a David(the underdog CCSVI promoters) against Goliath(the big nasty drug companies) but it should not be used to stir up people's emotions. The good thing is if 12,000 people have been treated, as you so empirically stated, we should be getting tons of empirical data from the researchers and doctors who have "liberated" people from MS.
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Advertisement

Postby Cece » Wed Dec 08, 2010 7:46 am

scorpion wrote: The good thing is if 12,000 people have been treated, as you so empirically stated, we should be getting tons of empirical data from the researchers and doctors who have "liberated" people from MS.

Here is what drsclafani said a week or so ago on this matter:
http://www.thisisms.com/ftopicp-144006.html#144006
drsclafani wrote:cece
all the data of all the cases done everywhere would be a great load of data. The problems include the secret treaters whose data is not accumulated or shared; data that has been contaminated by variation in practice, a necessary evil during startup; i am sure i can think of others.

trial data is helpful
registry data is valuable
reported data is often stimulating, enlightening and provocative

We have only just moved from a phase where treatment was most available in Europe, as medical tourism; to where it was available here in the US, often undercover, with no data collection; to where actual registries and trials have been begun and data will be collected.

What a ride to be a part of all this. :D
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Postby erinc14 » Wed Dec 08, 2010 8:43 am

scorpion , you freak me out because you never quit :roll:
User avatar
erinc14
Family Elder
 
Posts: 599
Joined: Sat Jun 12, 2010 3:00 pm
Location: Montreal

Postby scorpion » Wed Dec 08, 2010 9:44 am

erinc14 wrote:scorpion , you freak me out because you never quit :roll:


Please tell me what part of my post above you disagree with Erinc14. Dr. Embry states to Dr. Freedman that he values empirical evidence so I simply asked him what empirical evidence he has that grape extract, which is part of his "MS diet, positively effects MS. I also want to know what empirical evidence he has that 90% of people treated around the world had definitve CCSVI. He also claims that Freedman, because of his connectios to drug companies, will never even consider CCSVI as a legitmate hypothesis. How did he conclude that? Those questions freak you out?
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby CCSVIhusband » Wed Dec 08, 2010 10:00 am

It's your tone ... your continuous tone.

it's like an itch you just scratch and scratch deeper and deeper until your bleeding to death because you scratched through a major artery eventually.

your tone is the itch.

(you could compare it to Chinese water torture too).

It's ALWAYS disagreeing with CCSVI ... have you ever had ONE post positive on CCSVI? Just one?
User avatar
CCSVIhusband
Family Elder
 
Posts: 474
Joined: Sun Jun 27, 2010 3:00 pm
Location: Pittsburgh, PA USA

Postby L » Wed Dec 08, 2010 10:01 am

It does get a bit depressing, it's true..
User avatar
L
Family Elder
 
Posts: 946
Joined: Sat Oct 20, 2007 3:00 pm
Location: The United Kingdom

Postby scorpion » Wed Dec 08, 2010 10:09 am

CCSVIhusband wrote:It's your tone ... your continuous tone.

it's like an itch you just scratch and scratch deeper and deeper until your bleeding to death because you scratched through a major artery eventually.

your tone is the itch.

(you could compare it to Chinese water torture too).

It's ALWAYS disagreeing with CCSVI ... have you ever had ONE post positive on CCSVI? Just one?


Where did I ever say I disagree with CCSVI??? Please link to whatever post/posts you are referring too. There seems to be a problem with each and everyone of us who post anything critical of CCSVI. Since you decided to pipe in, as usual, I will ask you the same question I asked Erinc14. What do you disagree with ot not like about the content of my post??
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby CCSVIhusband » Wed Dec 08, 2010 10:45 am

scorpion wrote:
CCSVIhusband wrote:It's your tone ... your continuous tone.

it's like an itch you just scratch and scratch deeper and deeper until your bleeding to death because you scratched through a major artery eventually.

your tone is the itch.

(you could compare it to Chinese water torture too).

It's ALWAYS disagreeing with CCSVI ... have you ever had ONE post positive on CCSVI? Just one?


Where did I ever say I disagree with CCSVI??? Please link to whatever post/posts you are referring too. There seems to be a problem with each and everyone of us who post anything critical of CCSVI. Since you decided to pipe in, as usual, I will ask you the same question I asked Erinc14. What do you disagree with ot not like about the content of my post??



IN CONTINUATION OF MY POST (S)HE QUOTED:

It's the ALWAYS posting in opposition to certain people (me, but what do I care honestly and I think you finally figured that out), always dragging on people posting positives in regards to CCSVI (if it's not exactly scientific FACT, but something they FEEL, or have noticed).

It's like you're a parachute pulling against someone as they try to run. Or trying to run with weights on your ankles. Or trying to push a snowball up a hill. It's just a constant wear and drag.

It's not about one post above. It's about the whole. It's the nit-picking about semantics.

Look:

NOBODY disagrees CCSVI needs trials and to be proven. But is it ever going to be enough knowing it might not be the ALL answer? My guess is in your mind ... no ... until it's ALL it's nothing.

Read Bruce's posts, read mine about my wife, read HapyPoet, read Rose2, read Magoo, read TMrox (hell even read those who restenosed and went back and got a 2nd procedure and got the same results as the first time around) ... read the others who have had success ... and what's your immediate response? It's ... well look at x, y and z who didn't have success. Not responding in a positive manner to wow, great, so there is something to CCSVI there. (and I don't necessarily care that that's your post, because people do get both sides of the argument here - but that's just how it seems with you and the "skeptics" you care to associate with).

But do you ever admit that there might be something to CCSVI ... have you ever said it? No ... it's always, well IF it's linked (when you posted a hundred times on a study that DID link it). It's show me a study of this, or a study of that.

WE ALL have said, we know the risks, we know the potential outcomes ... great. We've all heard of placebo (can you tell us what we/our loved ones have experienced is placebo? NO ... for a FACT you cannot).

but I'm sure you're going to continue with your trend ... the past is the best indicator of future behavior. so carry on.

I'm sure these posts are going to get deleted - and there is absolutely no reason they should, because I think this is a reasonable discussion and not an attack ... it's how the rest of us see you and several others. It's not a discussion with you guys about CCSVI ... it's always an argument.

You can't have a discussion with someone who can't see the other side, all you can have is an argument. Yet what you think we're having is a discussion ... it's not - because you can't point to one positive comment you made about CCSVI. I made several of your arguments in my post already ... the possibility of placebo, the possibility of negative outcomes. I'm having a discussion. Show me one where you've had a positive side of CCSVI posted ... (if you can't - and I suspect you truly can't) ... it's not a discussion.

It's how your first post here at TIMS was in the stem cell forum ... and the majority of your posts continue to be. OK, so if stem cells is your interest ... perhaps there's a reason for your anti-interest (whatever you want to call it) in CCSVI ... (though I think both could be quite capable of great things together some day). We just don't know ... you're scorpion ... but WHO are you? Again, nobody knows. All we know is what we read, and read into your posts.
User avatar
CCSVIhusband
Family Elder
 
Posts: 474
Joined: Sun Jun 27, 2010 3:00 pm
Location: Pittsburgh, PA USA

Postby CCSVIhusband » Wed Dec 08, 2010 11:09 am

Should we go back and read your first post in the CCSVI forum about people having false hope?

or your second about how "ONLY" Dr. Dake could see your jugular malformations?
***** First it was ONLY Dr. Dake, and you've said before ONLY Dr. Zamboni, or ONLY those IN with Dr. Zamboni (implying Sclafani if I remember correctly). What about my wife's doctor who has never even seen Dr. Zamboni but is finding CCSVI in 100% of the MSer's he's treated so far (many on this board you wouldn't even know went to that doctor - nor have you EVER heard of his name).

Maybe read more and more of your posts in the CCSVI forum to see the growing trend that presents itself through them. It's fascinating really, that the trend started so early ... and continues.

Makes me pine for this comment you made:

scorpion
Family Elder


Joined: Nov 06, 2008
Posts: 900

Posted: Fri Oct 16, 2009 4:04 am Post subject: hey ladies and gentleman
I wanted to let you guys know that you were right and I was, well, not as open mined as I should have been about CCSVI. I have just been through so many treatment "duds" that I guess I have trouble with claims of "major breakthroughs". I now see that a major university is prepared to do a pretty large study on CCSVI and how it may relate to the progression of MS. I am still very skeptical about CCSVI and I may throw the skeptical comment out now and then but obviously people much smarter then I are taking this seriously. Anyway I hope things work out and I will sit back and watch with interest. Scorpion



It seems you've lost that open mindedness since 2009 ... unfortunately some of your fellow "skeptics" (which is how you referred to yourself in the early days) never demonstrated any kind of open mindedness. At least you did, in one post ... not too many others really though as I read back through.
User avatar
CCSVIhusband
Family Elder
 
Posts: 474
Joined: Sun Jun 27, 2010 3:00 pm
Location: Pittsburgh, PA USA

Postby scorpion » Wed Dec 08, 2010 11:29 am

CCSVIhusband wrote:Should we go back and read your first post in the CCSVI forum about people having false hope?

or your second about how "ONLY" Dr. Dake could see your jugular malformations?
***** First it was ONLY Dr. Dake, and you've said before ONLY Dr. Zamboni, or ONLY those IN with Dr. Zamboni (implying Sclafani if I remember correctly). What about my wife's doctor who has never even seen Dr. Zamboni but is finding CCSVI in 100% of the MSer's he's treated so far (many on this board you wouldn't even know went to that doctor - nor have you EVER heard of his name).

Maybe read more and more of your posts in the CCSVI forum to see the growing trend that presents itself through them. It's fascinating really, that the trend started so early ... and continues.

Makes me pine for this comment you made:

scorpion
Family Elder


Joined: Nov 06, 2008
Posts: 900

Posted: Fri Oct 16, 2009 4:04 am Post subject: hey ladies and gentleman
I wanted to let you guys know that you were right and I was, well, not as open mined as I should have been about CCSVI. I have just been through so many treatment "duds" that I guess I have trouble with claims of "major breakthroughs". I now see that a major university is prepared to do a pretty large study on CCSVI and how it may relate to the progression of MS. I am still very skeptical about CCSVI and I may throw the skeptical comment out now and then but obviously people much smarter then I are taking this seriously. Anyway I hope things work out and I will sit back and watch with interest. Scorpion



It seems you've lost that open mindedness since 2009 ... unfortunately some of your fellow "skeptics" (which is how you referred to yourself in the early days) never demonstrated any kind of open mindedness.


Hey I am at work and can not repsond as I want to but I would hope that this post is not deleted. I want to respond to you but I am off to a meeting. Sorry CCSVIHusabnd but although I do visit the Outerbanks we do not own a beach house! I guess that dash;s your hopes of sitting on the back porch with me and having a couple of beers over a heated CCSVI discussion, huh? :wink:
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby CCSVIhusband » Wed Dec 08, 2010 12:04 pm

I'd settle for you talking to my wife about her personal treatment, and outcomes with CCSVI ...
User avatar
CCSVIhusband
Family Elder
 
Posts: 474
Joined: Sun Jun 27, 2010 3:00 pm
Location: Pittsburgh, PA USA

Postby Lyon » Wed Dec 08, 2010 12:09 pm

CCSVIhusband wrote:Should we go back and read your first post in the CCSVI forum about people having false hope?

or your second about how "ONLY" Dr. Dake could see your jugular malformations?
***** First it was ONLY Dr. Dake, and you've said before ONLY Dr. Zamboni, or ONLY those IN with Dr. Zamboni (implying Sclafani if I remember correctly). What about my wife's doctor who has never even seen Dr. Zamboni but is finding CCSVI in 100% of the MSer's he's treated so far (many on this board you wouldn't even know went to that doctor - nor have you EVER heard of his name).

Maybe read more and more of your posts in the CCSVI forum to see the growing trend that presents itself through them. It's fascinating really, that the trend started so early ... and continues.

Maybe I'll run into you at your beach house on the Outer Banks though and we can discuss in person. I have several family members there and we visit frequently.



Makes me pine for this comment you made:

scorpion
Family Elder


Joined: Nov 06, 2008
Posts: 900

Posted: Fri Oct 16, 2009 4:04 am Post subject: hey ladies and gentleman
I wanted to let you guys know that you were right and I was, well, not as open mined as I should have been about CCSVI. I have just been through so many treatment "duds" that I guess I have trouble with claims of "major breakthroughs". I now see that a major university is prepared to do a pretty large study on CCSVI and how it may relate to the progression of MS. I am still very skeptical about CCSVI and I may throw the skeptical comment out now and then but obviously people much smarter then I are taking this seriously. Anyway I hope things work out and I will sit back and watch with interest. Scorpion



It seems you've lost that open mindedness since 2009 ... unfortunately some of your fellow "skeptics" (which is how you referred to yourself in the early days) never demonstrated any kind of open mindedness. At least you did, in one post ... not too many others really though as I read back through.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby CCSVIhusband » Wed Dec 08, 2010 12:11 pm

Lyon wrote:
CCSVIhusband wrote:Should we go back and read your first post in the CCSVI forum about people having false hope?

or your second about how "ONLY" Dr. Dake could see your jugular malformations?
***** First it was ONLY Dr. Dake, and you've said before ONLY Dr. Zamboni, or ONLY those IN with Dr. Zamboni (implying Sclafani if I remember correctly). What about my wife's doctor who has never even seen Dr. Zamboni but is finding CCSVI in 100% of the MSer's he's treated so far (many on this board you wouldn't even know went to that doctor - nor have you EVER heard of his name).

Maybe read more and more of your posts in the CCSVI forum to see the growing trend that presents itself through them. It's fascinating really, that the trend started so early ... and continues.

Maybe I'll run into you at your beach house on the Outer Banks though and we can discuss in person. I have several family members there and we visit frequently.



Makes me pine for this comment you made:

scorpion
Family Elder


Joined: Nov 06, 2008
Posts: 900

Posted: Fri Oct 16, 2009 4:04 am Post subject: hey ladies and gentleman
I wanted to let you guys know that you were right and I was, well, not as open mined as I should have been about CCSVI. I have just been through so many treatment "duds" that I guess I have trouble with claims of "major breakthroughs". I now see that a major university is prepared to do a pretty large study on CCSVI and how it may relate to the progression of MS. I am still very skeptical about CCSVI and I may throw the skeptical comment out now and then but obviously people much smarter then I are taking this seriously. Anyway I hope things work out and I will sit back and watch with interest. Scorpion



It seems you've lost that open mindedness since 2009 ... unfortunately some of your fellow "skeptics" (which is how you referred to yourself in the early days) never demonstrated any kind of open mindedness. At least you did, in one post ... not too many others really though as I read back through.


You didn't exactly write anything there Lyon, what's your point?
We're actually having a discussion, Scorpion and I (I think) ...

By the way ... surprisingly you once said:

Lyon
Family Elder


Joined: May 04, 2006
Posts: 5627

Posted: Thu Jun 25, 2009 7:36 am Post subject:
I think the most important thing that Joan and Marie have said through all of this is that once you identify a problem it would be foolish and irresponsible not to fix it.

From there you can only hope it provides benefits regarding MS but it sure's hell isn't going to hurt anything.

Best wishes to Mel in this pursuit.

_________________
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
User avatar
CCSVIhusband
Family Elder
 
Posts: 474
Joined: Sun Jun 27, 2010 3:00 pm
Location: Pittsburgh, PA USA

Postby scorpion » Wed Dec 08, 2010 1:36 pm

CCSVIhusband wrote:I'd settle for you talking to my wife about her personal treatment, and outcomes with CCSVI ...


and here I thought you had already done that....
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby Lyon » Wed Dec 08, 2010 2:12 pm

CCSVIhusband wrote:You didn't exactly write anything there Lyon, what's your point? or are you copying to send to get this topic shut down or something?

We're actually having a discussion, Scorpion and I (I think) ... no need for your ilk.
I was at work and unable to save the thread to my hard drive and not being sure you wouldn't get smart and change the post before anyone could notice, I made a copy you couldn't change by replying to it.

In spite of the fact that you produced a quote from scorpion dated
scorpion
Family Elder


Joined: Nov 06, 2008
Posts: 900

Posted: Fri Oct 16, 2009 4:04 am Post subject: hey ladies and gentleman
a search of "scorpion" as the writer shows that he didn't make any posts between the 15th and the 18th http://www.thisisms.com/fsearch-1349805381-705.html (page 48 of the search results) and I'm just at a loss trying to figure out where you got that quote from?
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: Robnl


Contact us | Terms of Service