80% for CDMS - It's Real

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

80% for CDMS - It's Real

Postby fiddler » Fri Feb 12, 2010 12:32 pm

Folks, I've just received an e-mail from the Canadian Press medical reporter. The statistics she reported (38% for CIS, 80% for CDMS) were NOT in the BNAC press release - they came from her interview with Zivadinov. I know that these numbers are still causing some debate and head-scratching, but at least you should know that it isn't the result of calculations done by an over-eager, mathematically-challenged reporter: they came from the horse's mouth.

Here is the link to the article itself:
http://www.google.com/hostednews/canadianpress/article/ALeqM5h9fFcp3BUaMrK7YnuZlWEAgfVkvw

...Ted
Last edited by fiddler on Sat Feb 13, 2010 7:58 am, edited 1 time in total.
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
User avatar
fiddler
Family Elder
 
Posts: 398
Joined: Wed Dec 02, 2009 3:00 pm
Location: Fredericton, Canada

Advertisement

Postby ozarkcanoer » Fri Feb 12, 2010 12:55 pm

fiddler,

Thanks for the info. But my head is reeling !! Why didn't Zivadinov report this in the press release ? There are so many %s floating around I don't know what to believe. These numbers certainly look more hopeful !!

ozarkcanoer
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 2:00 pm
Location: St. Louis, Missouri

Reporter's Words of Caution

Postby fiddler » Fri Feb 12, 2010 1:00 pm

In the reporter's own words:
If I may, I would caution that the findings released are very preliminary and it is difficult to assess them without seeing the actual study. A more in-depth analysis of the data will be released in April at a meeting of the American Academy of Neurology, and hopefully the full study will be published in a peer-reviewed journal after that.

And as I said in my article _ and Dr. Zivadinov agreed _ this is not "proof" of progression. It is merely an observational association at this point.

While I would be delighted if there is a connection that could end up in a treatment to help people with MS (including a dear friend of mine), as a longtime medical writer I worry about creating what could be false hope in people with the disease before anything is proven.

Hopefully that will be sooner than later.

Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
User avatar
fiddler
Family Elder
 
Posts: 398
Joined: Wed Dec 02, 2009 3:00 pm
Location: Fredericton, Canada

Postby tazbo » Fri Feb 12, 2010 1:08 pm

I'm a bit stunned. Does this mean a reporter who actually gave a statement of what was said has had the stats changed...and this person e-mailed you to clarify this?
tazbo
Family Member
 
Posts: 92
Joined: Sun Dec 06, 2009 3:00 pm
Location: Canada

Postby cah » Fri Feb 12, 2010 1:11 pm

Hm... if s/he's worried about false hopes, then s/he definitely has the wrong profession. Medical writers usually don't report on well known facts...
"There is only one good, knowledge, and one evil, ignorance." Socrates
User avatar
cah
Family Elder
 
Posts: 336
Joined: Tue Oct 27, 2009 3:00 pm
Location: Germany

Postby berriesarenice » Fri Feb 12, 2010 1:14 pm

It sounds like she got a better breakdown than we did. Did she have any more numbers to flesh out the picture? Exactly which groups were included with each other? Did CIS+CDMS make up entire MS group? How many were there of each? What was RRMS/SPMS/PPMS split? Did the normal group include other neurological diseases? How many of normal group were family members of MS patients? etc.
User avatar
berriesarenice
Family Member
 
Posts: 80
Joined: Tue Dec 01, 2009 3:00 pm
Location: USA

Postby TFau » Fri Feb 12, 2010 1:14 pm

ozarkcanoer wrote:fiddler,

Thanks for the info. But my head is reeling !! Why didn't Zivadinov report this in the press release ? There are so many %s floating around I don't know what to believe. These numbers certainly look more hopeful !!

ozarkcanoer


I agree - didn't he know what kind of uncertainty this would cause. Why did he apparently only tell one reporter the 38%/80% numbers. Also, I don't think that the medical writer should worry about getting our hopes up. She should just report the science.

Usually, preliminary numbers are indicative of the final numbers - if they weren't, you'd have to really wonder what was going on throughout the whole process, right?
User avatar
TFau
Family Elder
 
Posts: 222
Joined: Tue Nov 24, 2009 3:00 pm

Zivanidov referred to this ...

Postby frodo » Fri Feb 12, 2010 1:14 pm

For sure, Zivanidov referred to this when he said that his trial will stir discussion. Now it seems that CIS people is less affected by CCSVI than CDMS people.

I really cannot think that MS (lesions in the brain) could cause a vein malformation

Therefore, if the numbers are confirmed, this leaves two possibilities:

a) The stenosis and venous malformations are not congenital, but progressive, and there is still an unknown latent problem in MS patients that produces venous deformations and in turn, lesions in the brain.

b) CIS is not always an early MS and there are other factors that can lead to a CIS diagnosis.

Let's see how this evolves ...
Last edited by frodo on Sun Feb 14, 2010 1:16 am, edited 1 time in total.
User avatar
frodo
Family Elder
 
Posts: 620
Joined: Wed Dec 02, 2009 3:00 pm

No, the Stats Haven't Changed

Postby fiddler » Fri Feb 12, 2010 1:18 pm

No tazbo, what was reported in the Canadian Press was that, while the incidence of CCSVI in ALL MS patients was 55% (as the BNAC press release said), Zivadinov indicated that it was 80% in Clinically Diagnosed MSers. So nothing has changed from what has been discussed in other threads: while the incidence of CCSVI MAY be 55% (or 65%, depending how you count it) for some sort of broadly defined category of MSer (and we don't know how that was defined) it is 80% for people who have been clinically diagnosed.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
User avatar
fiddler
Family Elder
 
Posts: 398
Joined: Wed Dec 02, 2009 3:00 pm
Location: Fredericton, Canada

Re: No, the Stats Haven't Changed

Postby tazbo » Fri Feb 12, 2010 1:20 pm

fiddler wrote:No tazbo, what was reported in the Canadian Press was that, while the incidence of CCSVI in ALL MS patients was 55% (as the BNAC press release said), Zivadinov indicated that it was 80% in Clinically Diagnosed MSers. So nothing has changed from what has been discussed in other threads: while the incidence of CCSVI MAY be 55% (or 65%, depending how you count it) for some sort of broadly defined category of MSer (and we don't know how that was defined) it is 80% for people who have been clinically diagnosed.
...Ted

Thx Ted
tazbo
Family Member
 
Posts: 92
Joined: Sun Dec 06, 2009 3:00 pm
Location: Canada

Probably no more info than that

Postby fiddler » Fri Feb 12, 2010 1:36 pm

berriesarenice, I don't think she had any more information than that. I expect we need to see the published results before we can have a better understanding of what it all means. Perhaps she only got that information because she was the only reporter who asked Zivadinov the right questions.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
User avatar
fiddler
Family Elder
 
Posts: 398
Joined: Wed Dec 02, 2009 3:00 pm
Location: Fredericton, Canada

Postby Billmeik » Fri Feb 12, 2010 1:43 pm

so what does clinically diagnosed mean? Are these clinics with MRI's or are they just looking at symptoms. Do the clinics have lumbar puncture?
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 3:00 pm

Postby dunkempt » Fri Feb 12, 2010 2:02 pm

Therefore, if the numbers are confirmed, this leaves only one possiblity: The stenosis and venous malformations are not congenital, but progressive, and there is still an unknown latent problem in MS patients that produces venous deformations and in turn, lesions in the brain.


Does there have to a distinction between congenital and progressive?

A predisposition for veins to collapse (for example) would likely reveal itself more over time and wouldn’t necessarily need a second cause - though it would be easy to imagine compounding risks (Vitamin D, smoking, or whatever).

Others (say, those with missing veins) would be more purely congenital.

-d
dunkempt
Family Elder
 
Posts: 142
Joined: Sun Nov 29, 2009 3:00 pm
Location: Heart of the Continent

Postby ozarkcanoer » Fri Feb 12, 2010 2:03 pm

Ok, fiddler, NOW I understand (too many lesions on my brain.. some 40 odd). For some reason Zivadinov decided to report CIS and CDMS as "people with MS", but if you break out CDMS and CIS then 80% of CDMS had CCSVI and 38% of CIS had CCSVI. It would have saved a lot of heartache and confusion if the press release had stated this !!

ozarkcanoer
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 2:00 pm
Location: St. Louis, Missouri

Clinically Diagnosed

Postby fiddler » Fri Feb 12, 2010 2:09 pm

Billmeik, I assume clinically-diagnosed means those who have been diagnosed with MS (by a doctor) on the basis of the progression of MS symptoms and evidence (from MRI, lumbar puncture). If I'm wrong about that, I hope (and fully expect) to be corrected... :D
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
User avatar
fiddler
Family Elder
 
Posts: 398
Joined: Wed Dec 02, 2009 3:00 pm
Location: Fredericton, Canada

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service