CCSVI misrepresented at conference last night

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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CureIous
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Post by CureIous » 9 years ago

Sounds like they are strategizing to get "ahead of the game" and what better way than to create snippets, unsubstantiated of course, like, "two people have already died". Since that's getting repeated ad nauseum across the landscape now, one can only infer that will be the zinger to get people's attention, then turn to misrepresenting Zamboni, then it's a case closed, move on to other "promising therapies". Oh and toss bee stings in for good measure, that's the icing on the cake.

He is one voice, we are many, and as noted above, we have Mama's protecting their babies, nuff said. My Mom would do the same for me and I'm 40! :)
Mark.
Last edited by CureIous 9 years ago, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

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ariehs
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Post by ariehs » 9 years ago

That particular story interests me. I've heard NOTHING about people dying from stents. If someone died on the operating table, I'd not worry about it, as that is just the risk of surgery - even not-uncommon ones - but if the stents can prove fatal, then the PTBs in the drug world might be thinking that it only took 2 cases to cause havoc for Tysabri.

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cheerleader
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Post by cheerleader » 9 years ago

Thanks, Shannon. Publically responding-
http://www.facebook.com/pages/CCSVI-in- ... 0796282297
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

Shannon
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Post by Shannon » 9 years ago

ariehs wrote:That particular story interests me. I've heard NOTHING about people dying from stents. If someone died on the operating table, I'd not worry about it, as that is just the risk of surgery - even not-uncommon ones - but if the stents can prove fatal, then the PTBs in the drug world might be thinking that it only took 2 cases to cause havoc for Tysabri.
Right. I felt that because it was easy for him to describe how stents can migrate due to the natural flow of blood through the veins directly to the heart, that he chose to say that "Someone has already died due to a migrating stent."

Feel free to send comments to his e-mail. I'm sure he'll likely tell you that he is "in support of anything that may help MS and therefore looks forward to more studies pertaining to CCSVI." We all know how the politics of medicine work. If there truly were a cure for MS, a lot of people would quickly be out of business!

Joan - Wonderfully written e-mail to Dr. Khan. Thank you so much for putting into words the things that I could not have said myself! That picture of Jeff's veins is amazing. How anyone can dismiss the fact that there would be neurological damage is beyond me. Whether it be epilepsy, migraines, MS, or whatever. It's definately *&%^ed up!
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Ruthless67
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Post by Ruthless67 » 9 years ago

Shannon,

I did send an e-mail with Maries description of CCSVI to Dr. Kahn, will let you knowif he responds.

Lora

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Post by Shannon » 9 years ago

Oh, right. I forgot to add two other things that I noticed in his speech.
1) He posed the question "If MS were not autoimmune, why would the B-cells be involved in the manner that they are (he had previously gone into some detail with his slides about the activity of B-cells).

The study did not say that MS is not autoimmune, nor does the CCSVI community. Yet another example of seeming to not have read the paper.

2) Along with the opening about bee venom therapy, he stated that this is not a new phenomenon and that it has been known about since 1938.

I feel that this is to further make it sound like it's not such a big deal. I understand that there has been knowledge of a circulatory link since the 30's, maybe, but not of CCSVI specifically.

Carefully thought out comments, it would seem. :wink:

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Johnson
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Post by Johnson » 9 years ago

I too thought that your e-mail was very well written, Joan. I thought that this line:go to vascular doctors, to learn if this is part of their MS was brilliantly diplomatic.

It drives me nuts that people like this doctor have their heads so far down their own rabbit holes that they cannot see their own folly.

`Contrariwise,' continued Tweedledee, `if it was so, it might be; and if it were so, it would be; but as it isn't, it ain't. That's logic.' Lewis Carrol
My name is not really Johnson. MSed up since 1993

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Post by MS_mama » 9 years ago

One thing of note that I will say about Dr. Khan-- although he is paid by drugmakers to speak, he is very clear that he will not promote their products in his speech.

I heard him give a similar themed talk a few months ago, and he was very dismissive of CCSVI. Seemed to take it a little personally. He mockingly said that "it's merely interesting" that all MSers have stenosed veins, "but I don't see how it could affect the spinal cord" if the veins in question are those draining blood from the brain. He also made some snide comment about how people were doing a lot of talk, and not much action, etc. Almost as if there was something personal behind the scenes.

He of all people should be fully aware of what is going on, he has published papers on SWI and iron deposition with Dr. Haacke.
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />

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cah
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Post by cah » 9 years ago

ozarkcanoer wrote:Well... Dr Khan will NOT be on my list of big names supporting CCSVI. :(
Perhaps there also should be a list of big names NOT supporting CCSVI. So anyone can see where asking is a waste of time. :(

You can put in straight the complete medical advisory board of the german MS society. I'm still so mad about this. It's incorrect like the speech of Dr. Khan, but is the official statement of not a little MS society (approx. 122.000 PwMS in Germany). :evil:

(It's here: http://www.thisisms.com/ftopict-9201.html )
"There is only one good, knowledge, and one evil, ignorance." Socrates

tazbo
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Post by tazbo » 9 years ago

Hi folks...I have M.S. I sent a letter to Dr. Khan. It will no doubt be dis-counted due to my calling the good dr. to clarify what has been paraphrased as his comments re the Zamboni work. Either way I will forward the response.
John

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cheerleader
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Post by cheerleader » 9 years ago

Dr. Khan sent me a reply....
Here is the official Wayne State MS Center position on CCSVI research

http://mscenter.med.wayne.edu/pdf/ms_ce ... letter.pdf

more discussion here:
http://www.facebook.com/pages/CCSVI-in- ... 0796282297

It appears Dr. Khan is interested in studying CCSVI at Wayne State and is initiating a study. Well, that's good news!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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Moom9335
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CCSVI study

Post by Moom9335 » 9 years ago

YES!
Who said the people cannot be heard.? Do you all realize that, besides :D the wonderful efforts of Dr. Zamboni and all the others, WE THE PEOPLE have forced the trials that will be starting at WSU and other centers.

We have done it by educating ourselves, perservering and never giving up. Many thanks to all of you and the medical professionals who were willing to stick out their necks and insist on testing Dr. Zamboni's work. And, never forget Dr. F. Alfons Schelling who almost lost his career when he first discussed venous insufficiency in MS.

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MS_mama
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Post by MS_mama » 9 years ago

Dr. Omar Khan is one of the top MS researchers in the nation--his group has been one of the first research groups to identify and elucidate b-cell involvement in MS, for example. If he can take on CCSVI, that will be great. I sure hope that his attitude improves though. It's one thing to say that the research so far is preliminary, but a positive attitude towards fellow researchers is important.
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />

Shannon
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Post by Shannon » 9 years ago

I'm sorry, but I already knew that they (or at least Dr. Haacke and others) had plans to continue the research into this. But this does not negate the fact that there was clear misrepresentation given to the people with MS last night, and I am not even sure why. It certainly did not generate any interest at all, or lead anyone to ask even one question about it. I stand behind everything that I reported to have heard there, and I feel that posting "I am sorry for mischaracterizing Dr Khan's presentation" on the facebook page is saying that what I reported was not true. :cry: I think that the good doctor should take responsibility and just not even bring it up at his future conferences until he can give an unbiased opinion about it. It's like he wants to prove that he is up-to-date with all of the new and emerging therapies while at the same time trying to bide his time. I had expected that there may be no information at all about CCSVI, but I certainly did not expect to hear it presented in the way that I did.

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cheerleader
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Post by cheerleader » 9 years ago

Thanks for your honesty, Shannon. I can't even bring it up on FB, got abuse reports....check out the FB page now. I want to keep going, so I removed my letter....at least we can talk over here and not get shut down.
I just want to make sure people are telling the truth and not lying to MS patients about what CCSVI is and is not.
(BTW, I believe everything you said, Shannon)
apologies,
cheer
Last edited by cheerleader 9 years ago, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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