CCSVI misrepresented at conference last night

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

Postby ozarkcanoer » Thu Dec 10, 2009 7:54 pm

Shannon... I believe that everything that you said was just like you presented it. Dr Khan may belatedly realize his "gaffe" and is now trying to backtrack. You really helped us by relating your story. Thanks,

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Postby Shannon » Thu Dec 10, 2009 8:53 pm

It's no sweat Joan, I understand now. :o Thanks again for bringing his "gaffe" to his attention. Maybe now at least one neuro knows not to mess. :wink:

cah - What a disgrace about the German MS society! Well, as I've read here time and time again though, it wasn't going to be easy in the beginning to gain the respect that this study deserves, so I think that we are taking our hits without shame or defeat and forging forward with our knowledge and hunger for change. It will happen.

Lora - Thank you for sending the right information over. I'm sure that it will be helpful, if he actually takes the time to read it. Let me know what he says!

John - Thank you for your e-mail as well. I'm happy to have his words brought back to his attention so that he knows that we aren't all dummies in the audience, intimidated by doctors.

ozark and MSmama - I agree wholeheartedly that it is not in a doctors' best interest to take the work of other noted researchers or doctors and misrepresent their findings. I have no doubt that Dr. Khan is a great at what he does, but either needs to get all the facts straight before adding them to his speech or just not even try to talk about it at all. I am not interested in ruining anyone's reputation, I am just interested in making sure that the poor people with MS like me are not disillusioned. They have a right to the facts about CCSVI, seeing that when you look around the room, each one of them very likely have stenosed veins. That is significant any way you want to look at it! 8O
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Postby Sharon » Thu Dec 10, 2009 9:43 pm

Shannon -

I think each of us who have publicly questioned the speaker at MS society meetings knows of your frustration. I believe your recounting of what was said --- the positive is that now Wayne State Univ. has been put on notice -- this is a good thing for future dialogue about CCSVI. The medical community is getting the message that the grassroots efforts of MS'rs worldwide is strong and vocal and we are not going away.

Thanks for taking the time to attend the meeting.

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Postby Ruthless67 » Thu Dec 10, 2009 11:19 pm

Here is Dr. Kahn's response to my e-mail.

Thanks for your detailed email below. I will refer you to our website for our position paper on the topic of CCSVI and MS. The URL is http://mscenter.med.wayne.edu/

In my opinion, MRV-based analysis of CCSVI in MS is preliminary at best, nonetheless very interesting. It deserves further study which is exactly why many centers are planning to conduct such research. I am organizing one such effort which we hope will start soon. I fully agree with your comments regarding replication of data, and that more studies in this area of research are needed.

Regards,

Omar Khan
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continued pressure

Postby Dovechick » Thu Dec 10, 2009 11:45 pm

Shannon and Joan, Thanks for reporting on the conference and for commenting on it. I was sad to see that Joan had to retract her open letter to Dr Khan on fscebook, but I understand why she had to do it. I can honestly say that I saw nothing on it that could be termed abusive (or even misleading) and neither to my mind did Dr Khan in his reply.
Joan Have you still got your letter and the reply from Dr Khan? do you think they could be posted here?
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby Sotiris » Fri Dec 11, 2009 12:07 am

In the letter about CCSVI the Wayne State University Multiple Sclerosis Center is still misrepresenting prof. Zamboni's work when stating that:
"Their work also suggested that by opening the blocked veins with "stents", one could treat multiple sclerosis very effectively."
only to add later on that:
"we do not believe that invasive and potentially dangerous procedures such as placing stents in the neck veins should be performed in an attempt to treat or "cure" the disease."
It is well known that prof. Zamboni used only balloons to open the stenosed veins exactly because as he said in an interview such a procedure is not invasive and can be repeated if needed.
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CCSVI

Postby zaksin » Fri Dec 11, 2009 6:22 am

Its a joke isnt it , why arent the MS society not doing more, this could be a big breakthrough , i just want to to get these tests done to confirm yes they are blocked or no there not and go from there. its a discrace.

this is some of the reply fom my neuroligist that i have been talking to . These findings are new and highly contraversial. Most MS specialists in the UK and US think its unlikely this theory will turn out to be true. I know this does not proove that this theory is wrong. But you must be careful not to assume it means the theory is right.

How frusttrating is this, i cant afford to wait another 5 years for testing, surely the patient should have the right if they want stents. surgery e.t.c
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Postby MS_mama » Fri Dec 11, 2009 12:28 pm

Here's the thing with Dr. Khan, and other major MS researchers--it is their help that will be needed to open the doors for more CCSVI research.

I really believe that it is important to be encouraging and express thanks to such researchers for venturing into this research, and telling them how important it is for us, the people with the disease, for them to initiate such research. A hundred letters of thanks and encouragement to Dr. Khan will be infinitely more productive than a hundred letters of rebuke from people who did not even attend his program.

Granted, he may have said erroneous things, but we can also use a thank you note as an opportunity to slip in some information to correct anything that might have been misrepresented.

Just because he is skeptical now does not mean he will not vigorously pursue research into CCSVI--I'll give an example:

When I heard Dr. Khan speak in September, he strongly advised against MSers seeking stem cell transplants. He said that you may hear miracle stories, but what you don't see is that five years down the line, these people are in the same position they started in. However, later on in his talk, he said that for the permanent damage that MS does to the spinal cord, one of the promising treatments of the future will likely come from stem cells, and he spent months (or even years?) to convince a biotech firm in CA to invest in a study for MS patients at Wayne State University. So, he basically told us that the research is too early to suggest action now, but we are actively pursuing this as a possible treatment.

All that to say that I'd really encourage people to reach out to him, thank him for starting up research, and perhaps mention that while there are concerns with stents, perhaps they could consider a study like Dr. Zamboni's that only uses balloon angioplasty, and how that is much less risky than even some of the conventional MS treatments (like Novantrone or other types of chemo). The fact that they are doing a study shows that they don't think it's entirely implausible that CCSVI has some connection to MS.
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby CureIous » Fri Dec 11, 2009 1:00 pm

Seems as if "sleeping on it" and discretion is the better part of valor applies here. Myself, I would email first, and advise that a clarification is needed and would he provide it, and that his response will be publically posted with his permission, then replay his own words to him and ask what he meant, before rallying the troops for an email campaign, who knows how many times that was copied and put on other boards around the net that don't see the rebuttal or resultant "pullback".
This stuff doesn't do a thing for the still-suffering patient, who seems to get lost amid the main street parade. Sure there are maybe 5, 10% that *get it* and are on board, on fire and ready to write and lobby, and all that has it's place, but to expect the people who can't even define CCSVI or reflux to "join the fray" with little education on the topic is inviting a personality driven mob mentality looking for the next bad guy then the next one. Makes a lot of heat and little light.

Mark.
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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Postby Billmeik » Sat Dec 12, 2009 7:44 am

you have to understand that like the ms society says 100 remedies have got to this stage in the last 100 years. If you didn't study them but just said 'that's b.s.' for the last 100 years you'd be right.

so there is a habit. But I'm surprised at how sloppy and misinformed these experts are. Basic scholarship is weak at best. All one can assume is that the papers were'nt read with an open mind but begrudgingly and so the info wasn't absorbed.

Still I'm a newbie, you guys who have been with ccsvi for months must be used to this. I think it would be good to keep a file of statements from the last few months to bring up later. Even in the last few weeks the general knowledge has improved a lot...
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Postby jimmylegs » Sat Dec 12, 2009 9:31 am

cheer i will second the request for the letter to show up here even if only temporarily.. i imagine it was the FB response comments that waxed abusive...
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