Is it 80% for CDMS?

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

Is it 80% for CDMS?

Postby TFau » Wed Feb 10, 2010 8:19 pm

Thanks to Wichita for noting this:

From Canada Press
"The researchers also found fewer cases of CCSVI in patients who had experienced a single MS attack, called clinically isolated syndrome, compared to those with more advanced symptoms of the disease -38 per cent versus about 80 per cent.

Zivadinov, head of the Buffalo Neuroimaging Analysis Center at Buffalo General Hospital, said this suggests CCSVI could be linked to progression of MS. But he conceded his data do not offer proof of progression because the study looked at individual patients at only one point in time. A subsequent study is planned that would follow patients over time to see if venous insufficiency advances as their disease worsens."

Since Zamboni did not study CIS patients, does this mean that the number we should be comparing to Zamboni's 95% is 80%? I'd be much happier with that!
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Postby Cece » Wed Feb 10, 2010 8:34 pm

This is just so interesting!! I am trying to find the percentage of people with CIS who go on to be diagnosed with MS later.

Okay...I found that in people with CIS with no lesion found on their MRI, they have a 20% chance of being diagnosed with MS in 14 years. If even a single lesion is found, the likelihood of being diagnosed with ms is 80-90%. (http://www.medhelp.org/posts/Multiple-Sclerosis/CIS---THE-CLINICALLY-ISOLATED-SYNDROME/show/1138131).

So, someone with a diagnosis of CIS and any lesion on an MRI could be accurately considered to be at an early stage of MS progression.
Last edited by Cece on Wed Feb 10, 2010 8:41 pm, edited 1 time in total.
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Postby TFau » Wed Feb 10, 2010 8:41 pm

I don't usually speculate about these kinds of things (because I'm usually wrong), but I found the press release pretty underwhelming, because of the 55%/24% numbers, compared to the hype created by the newsletter. Now I'm wondering if the real excitement came from the numbers that led to the 55% - namely the 38% for CIS and 80% for the more progressed forms. I'm assuming that by more progressed forms means CDMS, based on how they described CIS. That part is really exciting, if I'm understanding this correctly.
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Re: Is it 80% for CDMS?

Postby cheerleader » Wed Feb 10, 2010 8:59 pm

TFau wrote:Thanks to Wichita for noting this:

From Canada Press
"The researchers also found fewer cases of CCSVI in patients who had experienced a single MS attack, called clinically isolated syndrome, compared to those with more advanced symptoms of the disease -38 per cent versus about 80 per cent.

Zivadinov, head of the Buffalo Neuroimaging Analysis Center at Buffalo General Hospital, said this suggests CCSVI could be linked to progression of MS. But he conceded his data do not offer proof of progression because the study looked at individual patients at only one point in time. A subsequent study is planned that would follow patients over time to see if venous insufficiency advances as their disease worsens."

Since Zamboni did not study CIS patients, does this mean that the number we should be comparing to Zamboni's 95% is 80%? I'd be much happier with that!


Good find. I wondered about the inclusion of CIS patients, since Zamboni only used CDMS patients referred to him by neurologist Dr. Salvi (although their identity was blinded to Dr. Z's team) This clears up some of the discrepancy. The full paper in April will give more detail...
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Postby TFau » Wed Feb 10, 2010 9:05 pm

I was hoping that you would weigh-in cheer.

Some neurologists in the press today seem to view the Buffalo numbers as showing that the jury is still out as to whether there is an association between CCSVI and MS. I think that understanding that the finding is 80% in MS patients once CIS patients are excluded leads to a different discussion.
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Postby nicko » Wed Feb 10, 2010 9:07 pm

80% would be more what i'd expect to see. 56% was just hard to swallow after all the 95% and 100% hype. I don't think they should be including CIS people this early on. Prove it first then dig deeper.

Also were the people with other neurological conditions included in the 55% as well?
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Postby yonderboy » Wed Feb 10, 2010 9:08 pm

Tfau,

After reading your post (above), I reread the original Buffalo study release, they say that "...The first 500 patients, both adults and children, were grouped based on their diagnosis: MS, clinically isolated syndrome (CIS) and "other neurologic diseases" (OND), in addition to healthy
controls..." Nowhere do they state that the CIS patients are included in the 55% number.

I then tried to read all of the releases reported today. It appears that only the Canadian press has printed the very exciting statement that "...The researchers also found fewer cases of CCSVI in patients who had experienced a single MS attack, called clinically isolated syndrome, compared to those with more advanced symptoms of the disease -38 per cent versus about 80 per cent..."

I agree that this would be earth shattering news, but unfortunately I think its just bad reporting because - using the information in the Buffalo release - that 280 of the 500 subjects had MS, and assuming that somehow the CIS subjects were included in the 280: in order to get from 55% with CCSVI to 80%, you have to assume that 167 of the 280 MS subjects actually only had CIS.

That just doesn't make sense to me - I hope I'm wrong.
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Postby nicko » Wed Feb 10, 2010 9:10 pm

TFau wrote:I was hoping that you would weigh-in cheer.

Some neurologists in the press today seem to view the Buffalo numbers as showing that the jury is still out as to whether there is an association between CCSVI and MS. I think that understanding that the finding is 80% in MS patients once CIS patients are excluded leads to a different discussion.


I know i've read similar things... the press releases were worded very poorly. Everyone skims over and sees 55%.
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Postby nicko » Wed Feb 10, 2010 9:31 pm

yonderboy wrote:Tfau,

After reading your post (above), I reread the original Buffalo study release, they say that "...The first 500 patients, both adults and children, were grouped based on their diagnosis: MS, clinically isolated syndrome (CIS) and "other neurologic diseases" (OND), in addition to healthy
controls..." Nowhere do they state that the CIS patients are included in the 55% number.

I then tried to read all of the releases reported today. It appears that only the Canadian press has printed the very exciting statement that "...The researchers also found fewer cases of CCSVI in patients who had experienced a single MS attack, called clinically isolated syndrome, compared to those with more advanced symptoms of the disease -38 per cent versus about 80 per cent..."

I agree that this would be earth shattering news, but unfortunately I think its just bad reporting because - using the information in the Buffalo release - that 280 of the 500 subjects had MS, and assuming that somehow the CIS subjects were included in the 280: in order to get from 55% with CCSVI to 80%, you have to assume that 167 of the 280 MS subjects actually only had CIS.

That just doesn't make sense to me - I hope I'm wrong.


This was my interpretation ,

We actually don't know the # of people in each group. So when they say 38 % of the CIS had ccsvi. Well how many did they originally scan? they aren't saying.

Take 80 + 38 / 2 and the average is 59 %, take off a few percent for other neurological dieseases and your right around 56%

I could be wrong, but it seems to me they are just lumping all the MS groups together. Which gives a average of 55%.

hey it makes sense to me :P
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Postby TFau » Wed Feb 10, 2010 9:32 pm

Hi Yonderboy:

I see what you're saying and I hope that you're wrong too. I'm really reluctant to believe that 80% is the number that we would compare to Zamboni's number, so I welcome any criticism of my run-on analysis below:

Where else would the 80% number come from? The CIS would not be part of the 161 healthy controls. They would have to be part of the remaining 59 patients. In any case, the comparison is between percentages, and there is no way to stretch 55% to 80% just because you're comparing groups - or am I'm missing something (I'm seriously asking because I'm pretty tired - this 80% thing is keeping me up).

I highly suspect that the CIS patients are part of the 280 because of how the following is worded: "...The researchers also found fewer cases of CCSVI in patients who had experienced a single MS attack, called clinically isolated syndrome, compared to those with more advanced symptoms of the disease -38 per cent versus about 80 per cent..." . They acknowledge that the CIS patients had an MS attack.
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Postby yonderboy » Wed Feb 10, 2010 9:51 pm

Its keeping me up too!

I think you're right - that in order for the Canadian Press statement to make sense, the CIS subjects have to be included in the total 280 MS subjects. I just have a hard time believing that roughly 160 CIS patients were included in the 280! Its easier for me to believe that a rushed Canadian Press reporter with very little math background, and even less of an understanding of weighted averages, misquoted or misunderstood somebody - especially when I can't find the quote anywhere else - or in the orginal Buffalo study release.

Let me be very clear - I'm not being Lyon here! - I hope I'm wrong, and the Canadian pressboys have scooped everyone!

Going to bed - take it easy.
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Postby Sawdoggie » Wed Feb 10, 2010 9:52 pm

"...The researchers also found fewer cases of CCSVI in patients who had experienced a single MS attack, called clinically isolated syndrome, compared to those with more advanced symptoms of the disease -38 per cent versus about 80 per cent..."

Nowhere did I see where "more advanced symptoms" was defined. This could be a subset of who knows what number of people within the MS group. For example, maybe it means people with an EDSS over 3 or 4, but until more data is released we don't know. It is an exciting statement though.
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Postby TFau » Wed Feb 10, 2010 9:56 pm

[quote="yonderboy"] Its easier for me to believe that a rushed Canadian Press reporter with very little math background, and even less of an understanding of weighted averages, misquoted or misunderstood somebody - especially when I can't find the quote anywhere else - or in the orginal Buffalo study release.
quote]

I know, I'm kind of worried that that is what is going on too. I guess that we'll find out soon!

Have a good night!
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Postby Cece » Wed Feb 10, 2010 10:17 pm

Sawdoggie wrote:Nowhere did I see where "more advanced symptoms" was defined. This could be a subset of who knows what number of people within the MS group.


This is where I'd place my money. 38% for CISers, 80% for CDMS with an EDSS of who-knows, and some percentage in between for people who are in between.
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Postby nicko » Wed Feb 10, 2010 10:18 pm

I hope we don't have to wait until april to find this out...........
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