The science and politics of CCSVI and Multiple Sclerosis

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

The science and politics of CCSVI and Multiple Sclerosis

Postby erinc14 » Sat Jun 19, 2010 8:24 am

FROM FEBRUARY

All journalists have their expert “sources”. For example, over the years, I have advised CTV’s Avis Favaro, among others. Similarly, readers of Tom Blackwell may conclude that one of his expert sources is Dr. Mark Freedman , head of U. of Ottawa’s MS program. Dr. Freedman’s mainstream orthodoxy in the immunological treatment of MS, and his negative opinion of Dr. Zamboni and CCSVI is well documented. "I think there are going to be millions of dollars spent now to follow a hoax.... If I thought for one instant there was substance to this, I'd be all over it,” Freedman told Blackwell in January, before the interim results came out of Buffalo.

First, I continue to believe that the CCSVI theory of MS proposed by Dr. Zamboni is scientifically plausible and deserving of serious and intensive investigation. Those health professionals, and others who, for whatever reason, remain in denial should get over it and commit to finding the answer rather than obstructing progress.


http://healthblog.ctv.ca/post/The-scien ... rosis.aspx
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Re: The science and politics of CCSVI and Multiple Sclerosis

Postby ikulo » Sat Jun 19, 2010 10:21 am

erinc14 wrote:"I think there are going to be millions of dollars spent now to follow a hoax.... If I thought for one instant there was substance to this, I'd be all over it,” Freedman told Blackwell in January, before the interim results came out of Buffalo.


So does his funding from the MSS mean he's "all over it"?? If he really thought it was a hoax, he wouldn't have taken the grant. Right? I don't see him taking money to disprove any other theory, only to prove the immune theory.
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Postby concerned » Sat Jun 19, 2010 10:34 am

So MS has nothing to do with the immune system then?
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Postby ikulo » Sat Jun 19, 2010 10:50 am

concerned wrote:So MS has nothing to do with the immune system then?


You're jumping to conclusions just to instigate. My only point was Freedman's hypocrisy.
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Postby concerned » Sat Jun 19, 2010 10:54 am

It does seem to be a common thread in some of the threads I've read here. (that ccsvi is the be-all-end-all of MS and everything we've learned up to this point is absolutely wrong.)

Does anyone here know Freedman personally? Because people are quick to judge his character, it would seem like there's some inside information I'm unaware of.
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Postby cheerleader » Sat Jun 19, 2010 11:10 am

concerned wrote:It does seem to be a common thread in some of the threads I've read here. (that ccsvi is the be-all-end-all of MS and everything we've learned up to this point is absolutely wrong.)

Does anyone here know Freedman personally? Because people are quick to judge his character, it would seem like there's some inside information I'm unaware of.


I really wish that new posters would go back and read some of the original information and the threads which began this discussion. No one who has been here since the beginning has ever claimed that the immune system is not involved in MS. That would be absurd. Dr. Zamboni maintains that patients should remain on their DMDs and I have said that time and again- on here and Facebook. We do not know how long the immune system will remain active in this venous model of MS. The studies just aren't there.

The science behind CCSVI is explained in Dr. Zamboni's original thesis.
"The Big Idea: Iron-dependent inflammation in venous disease and proposed parallels in multiple sclerosis"
http://jrsm.rsmjournals.com/cgi/content/full/99/11/589
Here are all of his publications:
http://www.fondazionehilarescere.org/en ... zioni.html

As CVI in the legs is begun by venous congestion and iron deposition into tissue which begins an immune system cascade--Dr. Zamboni found a similar situation in the CNS venous system.

The comments on Dr. Freedman's position are largely based on statements he has made to the press and in public forums. He has stated on record that he believes this is a hoax. Does that bias his research? I have no idea. I do not know the man personally.

Please....go to page 54 of the this thread and check out some of the original discussions. http://www.thisisms.com/forum-40-days0-2650.html
Read the original CCSVI thread. Read the research papers.

I'm not around here much anymore, because many of the threads tend to devolve into personal attacks, trolling with emoticons, and general rudeness. It's really a shame, actually. Because this is where the discusson started.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby erinc14 » Sat Jun 19, 2010 1:22 pm

Does anyone here know Freedman personally? Because people are quick to judge his character,



people don't seem to like him


http://www.ratemds.com/doctor-ratings/60483
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Postby scorpion » Sat Jun 19, 2010 2:10 pm

erinc14 wrote:
Does anyone here know Freedman personally? Because people are quick to judge his character,



people don't seem to like him


http://www.ratemds.com/doctor-ratings/60483


It was very helpful to see that about 30% of Freedman's patients do not like him. :? Interestingly enough I have never saw a post on here, before the CCSVI craze, discussing Dr. "Evil" Freedman. It seems his speaking out on his ideas regarding CCSVI have made him public enemy number one around these parts. You would think he would look at the results of recent studies and wise up! Doctors from the U.K. and Germany found, in a study of 56 people with MS, that one person had CCSVI. There is also the Amsterdam Study which found:

“We have images of the veins of 40 subjects: 20 MS patients and 20 healthy individuals, same age and same gender” says Neuro Radiologist Mike Wattjes. “This is called MRV or MR-Venography – a special application of MRI that gives a good picture of the veins. The images were evaluated by colleagues who did not know whom the healthy subjects and whom the MS patients were. 50% of al subjects appeared to have Stenosis, equally distributed among the MS and healthy subjects. Bottom line, we see no systematic difference between people with and without MS.”

"This conclusion is bad news for Zamboni’s theory. But the researchers made an even more striking discovery: They set out to see whether blood stagnated or refluxed in brains of people with narrowed veins. Nothing of the kind seemed to be the case. Blood kept flowing freely despite the narrowing in the Jugular veins. “Such narrowing is thus not a pathology” concludes the Radiologist. “it’s just like red hair doesn’t need to be treated”.
Wise up Freedman!!!!
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Postby concerned » Sat Jun 19, 2010 2:12 pm

cheerleader wrote:
concerned wrote:It does seem to be a common thread in some of the threads I've read here. (that ccsvi is the be-all-end-all of MS and everything we've learned up to this point is absolutely wrong.)

Does anyone here know Freedman personally? Because people are quick to judge his character, it would seem like there's some inside information I'm unaware of.


I really wish that new posters would go back and read some of the original information and the threads which began this discussion. No one who has been here since the beginning has ever claimed that the immune system is not involved in MS. That would be absurd. Dr. Zamboni maintains that patients should remain on their DMDs and I have said that time and again- on here and Facebook. We do not know how long the immune system will remain active in this venous model of MS. The studies just aren't there.


cheer


Lots of people do make claims like that though and as a leader of this movement, you should have a certain responsibility for your followers comments. People are quick to jump at nay sayers who say something inaccurate, but very rarely to pro-ccsvi'ers. I think this results in lopsided discussions which aren't doing much for the advancement of research but getting people to take out bank loans to go overseas and get an experimental procedure.

Cheer, I know that you do make efforts to steer CCSVI'ers in more rational directions (and I understand why people are being irrational, MS is terrible) but there is a lot at stake for patients flying over seas and getting this done outside of controlled studies. And these are issues that effect me.

Also, I'm not a scientist or neurologist or vascular doc so reading those studies means literally nothing to me. Seeing a consensus built in the relevant fields would. But in the mean time, I think it's time to stop the groupthink, hyperbole, fuzzy analogies, character assassinations, etc.
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Postby ikulo » Sat Jun 19, 2010 4:53 pm

Concerned - Cheer has no responsibility for anyone. We are all adults here and we speak our mind for better or worse. This is an internet message board and users are free to do as they wish with the information published therein. To hold Cheer accountable for the thousands of opinions on the internet and elsewhere is irrational.

Moreover, you are quick to hold Cheer responsible for internet users while at the same time excusing Dr. Freedman's behavior. Dr. Freedman is on the Medical Advisory Committee for one of the largest MS Societies in the world. No doubt such a position exerts tremendous influence on the organization's policies and funding options. Nevertheless, he has done nothing but dismiss even the remote possibility that multiple sclerosis is associated with vascular problems, even going so far as to describe it as a hoax. If anyone should be held responsible, it should be him for making such unsubstantiated judgments while in a position of such influence.

You are right, people jump on Dr. F because he is a naysayer. But, it was irresponsible for him to have taken such a drastic position against CCSVI. Had the doctor been at least ambivalent about the discovery, I doubt he would have received such an unwelcome reception. Indeed, every action has an equal and opposite reaction. In the case of Dr. F, his actions were met with similarly irrational and extreme reactions.
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Postby concerned » Sat Jun 19, 2010 5:09 pm

I don't hold her accountable for all posters on this forum, but as one of the main proponents of this theory, and as at least a kind of de facto leader of a grassroots political movement, she should have some responsibility.
I mentioned that she has taken measures to steer things in the right direction, and I commend her for that.
I merely think as much attention should be paid to inaccuracies in what the CCSVI'ers publish on the internet as the skeptics. After all, a lot of the people in the movement are getting their information mainly from sources such as this board, and making big medical decisions based on them.
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Postby Shueywho » Sat Jun 19, 2010 5:25 pm

http://www.ctv.ca/CTVNews/W5Archive/200 ... ms_090213/

Dr. Freedman interview from 2009 on his research and outcomes. Just to compare to now. This news piece is interesting as it also goes into a controversial stem cell treatment in China also. It is in two parts.

"Is this a cure?" check out his answer near the end of part one.

Are high heels considered fact based science or placebo? I didn't once hear the word placebo in reference to the outcome of one of his patients, Jennifer.
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Postby fernando » Sat Jun 19, 2010 5:28 pm

Concerned,

I don't know what to make of your posts. What do you want regarding CCSVI?

I think it is unfair (in fact rude) telling people that Cheer has to do this or that, really.

The big medical decisions are made with doctors help. Nobody puts an echo doppler probe on his/her own neck nor sticks a catheter into his/her own groin area. Of course, there are doctors who would do anything for money. But that happens on both sides of the argument.
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Postby Lyon » Sat Jun 19, 2010 6:15 pm

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Last edited by Lyon on Sun Nov 20, 2011 8:21 pm, edited 1 time in total.
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Postby blossom » Sat Jun 19, 2010 6:31 pm

i can only speak for myself (and think for myself). i can honestly say that i never once felt that a woman named CHEERLEADER was trying to get me or anyone else to drink some of JIM JONES'S KOOLAID. INSTEAD i read about a woman that had found a treatment that helped her husband that has ms. AND she was good enough to share her story and try to promote it so that others could possibly get help too. i never heard her claim that it is the total answer in fact on her post she has told everything her husband is doing also. also she has said that she worries for the ones that have to travel because of many issues. she is busy trying to do what she can to see that anyone "who chooses" to get this treatment can. she has not posted anything that if a person wants to they can pretty much check it out theirself. if CHEERLEADER and a few others would not have gotten the word out then what? it would have been shoved under the rug for another 40 or 50 yrs. as far as freedman and the other ones that have said some pretty ignorant arrogant remarks about ccsvi that to me sounded like they were talking out their rear end and not their head because their head would know better. that is, if they would look at it as a medical procedure that is helping people that has ms. plain and simple. it is a procedure that is not new. you would think that a true physician would be real happy that something like this is available. but no, freedman and all the other ones have created this conspiracy theory by their actions. all these posts can be read on this site other sites or we can go it on our own and try to figure it out. CHOICES, DISCUSSION, GOOD AND BAD HERE IS SOME INFO. we are not kids here and yes CHEERLEADER is a leader but she is not our parient. so, responsible for stuff written here-i don't think so. myself i want to hear the good and bad results of ccsvi. then i make up my own mind. "DON'T SEE ANYONE SERVING KOOL-AID HERE."
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