80% for CDMS - It's Real

fiddler · Post by **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/canadi ... lWEAgfVkvw

...Ted

ozarkcanoer · Post by **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

fiddler · Post by **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.

tazbo · Post by **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?

cah · Post by **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...

berriesarenice · Post by **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.

TFau · Post by **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?

frodo · Post by **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 ...

fiddler · Post by **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

tazbo · Post by **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

fiddler · Post by **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

Billmeik · Post by **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?

dunkempt · Post by **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

ozarkcanoer · Post by **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

fiddler · Post by **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...

...Ted

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80% for CDMS - It's Real

80% for CDMS - It's Real

Reporter's Words of Caution

Zivanidov referred to this ...

No, the Stats Haven't Changed

Re: No, the Stats Haven't Changed

Probably no more info than that

Clinically Diagnosed