80% for CDMS - It's Real

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

List of Questions for Zivadinov

Postby fiddler » Sun Feb 14, 2010 10:14 am

Folks, I really think that starting a "List of Questions for Zivadinov" or "List of Questions for CCSVI Researchers" is a VERY good idea, primarily valuable for us as "consumers" of research. It probably should have a first entry (regularly edited by the creator of the thread) that would contain the questions that "survive" the scrutiny and arguments of contributors farther down in the thread. This will require some brave soul to be the originator who is willing to throw up some "straw man" questions that will likely be criticized and/or tweaked by others.

A colleague has just informed me today that he will be away because of illness in his family, and so I'll have to cover for him. Does someone want to take on this task?
...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 4:00 pm
Location: Fredericton, Canada

Advertisement

Postby Billmeik » Sun Feb 14, 2010 10:10 pm

really I dont think letting this thread die is a good idea. I mean it is a kind of holder for possible good news. We just need to figure out a way to solid that news up.
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 4:00 pm

Postby fogdweller » Sun Feb 14, 2010 11:00 pm

Fiddler, I think that is a good idea, but he probably can't say much until the results are released in april. Most of the questions are probably going to be answered when all the numbers are crunched by statisticians and a detailed report issued.I know April seems like forever far away, but we probably have to wait.
I started to think up a list of questions, and each one led me to the answer that we would know once the final report came out, and he probably is somewhat restricted in what he can say before that.
User avatar
fogdweller
Family Elder
 
Posts: 412
Joined: Tue Dec 08, 2009 4:00 pm

Expectations

Postby fiddler » Mon Feb 15, 2010 6:03 am

Hi fogdweller,
I also don't expect to get many (if any) answers to our questions before April. I see it more as a way to "educate ourselves" about what questions are most important and why, so that when the results come out we can compare what has been published against our questions. We'll be better prepared to understand the results, and we'll better understand where the published results fail to answer our questions.

Here is an example of a simple question we might ask: "Are 500 people enough of a poulation to put much faith in the results?" I've heard some remarks that went something like "It's such a small sample, you can't get any significant results", but my own (limited) understanding of blind trials is that this is really quite a good sample size.

As well, there are other questions posed concerning the definitions that were or could be used in the published results, such as "What is the definition of people with MS, and how were they divided into people with CIS and CDMS? (if that is what the researchers did?"

How were the controls chosen? Were they random, or were they people that MSers convinced to come to the clinic with them, and so were family members that could have shared congenital CCSVI? I can't believe that the researchers would have done that, but in a rushed study, who knows... it's good to ask.

Others have posted links in this thread that call into question how scientists define significance, but perhaps we want to (at least at first) stick to less esoteric 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 4:00 pm
Location: Fredericton, Canada

Postby AlmostClever » Mon Feb 15, 2010 6:31 am

As with most clinical studies, I am sure the sponsor has an agreement with the researchers not to disclose information until the sponsor allows it. (I'm assuming the sponsor is the college.)

I believe Ziv's hands are contractually tied and his lips are sealed.

But putting the list together certainly wouldn't hurt and would help us pass the time until the results are here!

...and back to my Mafia I go...
If you can't explain it simply, you don't understand it well enough. - Al Einstein
AlmostClever
Family Elder
 
Posts: 366
Joined: Mon Dec 21, 2009 4:00 pm
Location: Houston, TX

Postby Billmeik » Mon Feb 15, 2010 1:10 pm

did anyone ask the reporter if 'patients with more symptoms ' means CDMS?
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 4:00 pm

Postby Billmeik » Mon Feb 15, 2010 1:30 pm


Yes.

-------Original Message-------

From: Bill Meikle
Date: 2/14/2010 10:53:10 AM
To: rzivadinov@bnac.net
Subject: cdms and cis numbers...

Hi Dr.Zivadinov

So the CBC reporter compared the rates for CIS subjects to "those with more advanced symptoms of the disease".

would that be CIS vs CDMS?

Thanks.



so there's our answer, for people who actually have ms it's 80%! Thank you dr ziv if you are reading this!!
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 4:00 pm

Postby Lyon » Mon Feb 15, 2010 1:31 pm

..
Last edited by Lyon on Tue Jun 21, 2011 5:12 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Billmeik » Mon Feb 15, 2010 1:32 pm

course it wasn't a cbc reporter if you want to be picky, but that 'yes' is his words.
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 4:00 pm

Postby Lyon » Mon Feb 15, 2010 1:39 pm

..
Last edited by Lyon on Tue Jun 21, 2011 5:13 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby weegie1 » Mon Feb 15, 2010 1:45 pm

so there's our answer, for people who actually have ms it's 80%! Thank you dr ziv if you are reading this!!

we don't know this it is conjecture and something dr z should not have allowed speculation about[/quote]
User avatar
weegie1
Family Member
 
Posts: 33
Joined: Sat Jan 23, 2010 4:00 pm
Location: Glasgow, Scotland

Postby Lyon » Mon Feb 15, 2010 1:51 pm

..
Last edited by Lyon on Tue Jun 21, 2011 5:13 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Cece » Mon Feb 15, 2010 2:20 pm

Wow! Thanks, Billmeik - that's big news. I had always been reading that Canadian press release as if it was "advanced" m.s., not CDMS, and I am happy to be wrong about that.
"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
Cece
Family Elder
 
Posts: 9009
Joined: Mon Jan 04, 2010 4:00 pm

Postby ClaireParry » Mon Feb 15, 2010 2:30 pm

Thats amazing!!!!

Lets hope in April the results are a lot clearer, leaving us all without having to practice our 'school days' stats crunching skilss :wink: :wink:

Claire
User avatar
ClaireParry
Family Elder
 
Posts: 218
Joined: Tue Oct 20, 2009 3:00 pm
Location: Worcestershire, U.K

Postby weegie1 » Mon Feb 15, 2010 2:38 pm

the only thing dr zivandindov has confirmed is it what's in his results
that's not being a sceptic that's being realistic
i'm as optistimistic as anyone else but only based on confirmed results
none of us know the full results so it is all speculation
you don't win the nobel prize for medicine based on speculation
User avatar
weegie1
Family Member
 
Posts: 33
Joined: Sat Jan 23, 2010 4:00 pm
Location: Glasgow, Scotland

PreviousNext

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