80% for CDMS - It's Real

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

Postby Billmeik » Thu Feb 18, 2010 7:31 am

I believe the 80% number represents a subset of patients with more severe MS, probably as judged by EDSS...


hmm that's what the note to ziv clarified earlier in this thread. In fact just a little reading back would find that it was confirmed by the doctor himself that the 80 was for cdms.

but the math. I hope you are missing something. 280 cdms + 59=339 patients so 56% of those is 189 patients with ccsvi. Now 280 cdms patients with 80% ccsvi means 224 patients with ccsvi. Ya you're right. That's too many.

so what if we took that 280 patients and dropped the 10% borderline. 252 patients at 80% still needs 200 ccsvi and we only have 189. so 75% vs. 80%..

I'm hoping some of those numbers you got from reports are a bit soft. (like this math probably is)
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Postby weegie1 » Thu Feb 18, 2010 7:57 am

for me it's really bad i've got a science degree :oops:
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Re: 4 to 1

Postby TFau » Thu Feb 18, 2010 8:05 am

marcstck wrote:
fiddler wrote:Markstck, where did you learn that the CDMS to CIS ratio was 4 to 1?
...Ted


Various outlets have reported that the 500 test subjects broke down as follows: 280 clinically definite MS, 161 healthy controls, and 59 clinically isolated syndrome. The ratio is actually 4.75:1.[quote]

Hi Markstck: could you let us know where you got these numbers? I haven't seen them broken down in that way. Where would the OND (other neurological diseases) be? I've seen the 280, 161, and 59 numbers, but I've never seen the 59 being attributed to CIS patients. (Of course, I realize that just because I haven't seen it, doesn't mean it's not there!...)

Weegie, I thought that your questions were very scientific sounding...
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Postby Cece » Thu Feb 18, 2010 9:26 am

Since Zivadinov responded to the first email, he could be emailed back....the exact question seems to be, "Does the 80% figure include all clinically defined MS or only a subset of clinically defined MS with more advanced disease?"
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Question

Postby fiddler » Thu Feb 18, 2010 9:36 am

Doesn't CDMS stand for clinically diagnosed MS?

Billmeik, think you can get another response from Dr. Z? And just to make sure there are no more misunderstanding, you could even change the question to "Does the 80% (having CCSVI) figure include all clinically diagnosed MS patients, or only a subset of CDMS people with more advanced MS symptoms?" You might begin the message by saying people on TiMS are still confused since the numbers don't seem to add up: to get 56% out of 80% (CDMS) and 38% (CIS), there would have had to have been as many CIS as CDMS patients.
..Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Billmeik » Thu Feb 18, 2010 10:21 am

but if that 38% is added to the 10% borderline you get almost half dont you?
Like 48%?

Dont think I'll ask again til I understand this.
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Postby L » Thu Feb 18, 2010 10:26 am

Billmeik wrote:but if that 38% is added to the 10% borderline you get almost half dont you?
Like 48%?

Dont think I'll ask again til I understand this.


But you'd add 10% of 38%, no? So, 38 + 3.8 = 41.8%
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Re: Question

Postby Cece » Thu Feb 18, 2010 10:29 am

fiddler wrote:Doesn't CDMS stand for clinically diagnosed MS?


Yes, whoops!

rather off subject: today I told my four-year-old that he couldn't bring his toy bucket because it had no handle; he thought about this quite intently and went to check out the bucket and several minutes later brought it back to me to say it did have a handle; and I was like, of course it does, but it doesn't have the shovel...and then realized I'd said handle and not shovel in the first place...words can be slippery!

Billmeik, yeah, I can see where you'd want to hold off...we will get the answers soon enough in April...
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Postby ozarkcanoer » Thu Feb 18, 2010 10:35 am

According to Dr Zamboni's 2008 paper, "Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis" :

Background: The extracranial venous outflow routes in clinically defined multiple sclerosis (CDMS) have not previously been investigated."

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Postby marcstck » Thu Feb 18, 2010 11:22 am

I've seen that same specific test subject breakdown in a number of places, most recently in Dr. Ashton Hembry's latest paper:

Drs Zivadinov and Weinstock-Guttman began their study in 2009 and it was called
“Combined Transcranial and Extracranial Venous Doppler (CTEVD) evaluation in MS”
and in this article I will simply refer to it as the Buffalo Study. The Buffalo study will
include about 1600 subjects and is being done in three phases. Phase 1 has recently been
completed and it involved 500 patients with included 280 persons with MS, 161 healthy
controls and 59 subjects who either had experienced a clinically isolated syndrome (CIS)
(in most cases (80%+) a precursor to MS) or who were suffering from either a
neurological or autoimmune disease. The Buffalo researchers used the same Ultrasound
Doppler technology and measured the same five blood flow parameters as the Zamboni
team did in order to determine the presence or absence of CCSVI in all 500 subjects.


you can access the entire paper here:

http://www.direct-ms.org/magazines/Embr ... 2%2010.pdf

As I said, I've also seen the same numbers from several other sources...
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Postby marcstck » Thu Feb 18, 2010 11:30 am

This article also makes the case for the same numbers:

http://www.sciencedaily.com/releases/20 ... 110744.htm

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


and then:

Of the total participants, 97.2 percent were adults, with the 280 MS patients comprising the largest disease cohort examined in the study to date. The majority of MS subjects were diagnosed with the relapsing-remitting form of MS. There were 161 healthy controls. Doppler scan results were reported on five specific criteria that affect venous blood flow. Patients who met at least two of the criteria were considered to have CCSVI. More detailed analysis of specific Doppler criteria and their association to disease status is underway.


Since we know that there were 500 total test subjects broken down into three groups of patients (CDMS, healthy controls, and CIS/other neurologic diseases) and we also know that there were 280 CDMS patients, and 161 healthy controls, simple math tells us that there were 59 patients in the CIS/other neurologic diseases category.
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Postby Billmeik » Thu Feb 18, 2010 11:36 am

But you'd add 10% of 38%, no? So, 38 + 3.8 = 41.8%



no but my math is wrong too. I get 189 patients vs the 202 I should get. so I'm short. Dunno. Not a ton. maybe 5%?
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Postby L » Thu Feb 18, 2010 11:41 am

Billmeik wrote:
But you'd add 10% of 38%, no? So, 38 + 3.8 = 41.8%



no but my math is wrong too. I get 189 patients vs the 202 I should get. so I'm short. Dunno. Not a ton. maybe 5%?


Yeah, I was completely wrong. I should have kept quiet..
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Postby TFau » Thu Feb 18, 2010 11:48 am

"As I said, I've also seen the same numbers from several other sources...[/quote]

Hi Marc:

I saw Dr. Embry's paper. I believe that he only has access to publicly available information, right? In their Feb. press release, the BNAC addressed the breakdown as follows:

"[t]he 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."

This seems to be a classic grammatical example of how use of a comma before the last item of a list should be mandatory ( a pet peeve of mine). This sentence is ambiguous and can be read as meaning that (i) the CIS and OND patients have been grouped together in a study group (in which case they would probably make up the group having 59 patients), or (ii) the CIS and OND groups are separate, and the OND group is the last item in the list. If (ii) is correct, it is not clear where CIS falls in the study groups.

I know that this seems very nitpicky, but analyzing this sort of thing, especially in the scientific context, is sort of what I do for a living. Plus, of course, I'm really hoping for an interpretation of the study that shows the highest correlation between MS and CCSVI.

I also note that BNAC listed the following in its criteria for study subjects in the CTEVD study:

- Be an adult or child with confirmed MS
-Adult MS must be supported by fulfillment of the McDonald criteria
- Pediatric MS must be supported by fulfillment of Krupp and International criteria
- Have a disease course of Clinically Isolated Syndrome (CIS), Relapse-Remitting (RR), Secondary-Progressive (SP), or Primary-Progressive (PP) supported by the Lublin criteria

You could infer from this that an adult or child with confirmed MS could have any of CIS, RR, SP, or PP. That is, a patient with CIS would be considered in the MS study group.

Just my thoughts,
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Postby marcstck » Thu Feb 18, 2010 12:13 pm

I don't think you can infer anything about the breakdown of the trial results by the inclusion criteria. Inclusion criteria is just that, guidelines as to who will be allowed to participate in the study.

Given the way the study results were presented, I think it's safe to assume that the CIS and OND subjects were treated as one group. It would make no theoretical sense to group CIS patients with CDMS patients, because that would certainly skew results. CIS patients would be looked at as a subgroup in order to assess whether CCSVI has impact on the progression of disease.

To my mind, the numbers released by Buffalo are solid, and if an 80% correlation between CDMS and CCSVI was actually found, they'd be shouting it from the rooftops. Buffalo is extremely hard up for funding, and an 80% correlation would have opened up many financial spigots.

We all would like to see CCSVI the THE answer for MS, but, given all that is known about the heterogeneity of MS, that result was unlikely. I attended a fundraiser for the Buffalo study about two weeks before the results were announced, and told some of the principles there that I expected a scientifically valid study to show approximately 60% correlation between MS and CCSVI, along with a substantial number of healthy subjects also displaying vascular abnormalities. I based this assumption on what could reasonably be expected when a vascular system that had never before been fully examined was finally looked at, in conjunction with all that we know about MS. The people I made this statement to initially looked surprised, and then assured me that I would be very satisfied when the results were released.

Hope is a great thing, but it should never eclipse reason.
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