Dr. Zamboni's long term results

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

Postby Sharon » Sat Jan 09, 2010 10:22 am

Cheer - good reminder to everyone especially the "newbies". Early on, we were very careful to cite our references for medical research. We were also very careful to use the words "in my opinion" or "I believe" or this is "anecdotal". If invalid statements are not made in the first place, then we do not need the CCSVI patrol out there having to correct them.

Thanks GICi for your thoughtful comment

Sharon
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Postby cah » Sat Jan 09, 2010 12:44 pm

cheerleader wrote:Please, if you are new to this site (since the CTV documentary) spend some time reading the older posts, and all of the research linked on the sticky to learn from what has been discussed before. If you have a question, try the search function first.


This was said quite often in different threads here recently. The Problem is that a newbie has to stumble upon this in order to do like that. There should be a "New here?"-Sticky which explains how to use this forum, where and what the important information/threads are, recommendations what to read first and maybe a little FAQ. It then could be used as some sort of index subsequently, as it honestly is quite hard to find the right information between all those short and in terms of information "useless" comments, greetings and so on. It becomes impossible if you don't know what to search. This newbie-thread should be kept as strict and on topic as the tracking thread (which in my opinion is the best thread by far here simply because it so purposive). I would've started this but I think there are people here who could do this more proper as I'm not here long enough for that.

Just try to look at the forum as if it were the first time. You really wouldn't have the tiniest clue were to start and just would be overwhelmed by the amount of threads and posts.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby Algis » Sat Jan 09, 2010 10:40 pm

No disrespect meant to anybody.

And perhaps the CCSVI thread is the most informed; nonetheless we must be careful :)

Cheers!
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Postby cah » Sun Jan 10, 2010 12:39 am

Algis wrote:No disrespect meant to anybody.


Dito!

But getting tired of answering newbie questions would be really malicious to the movement, I think! So I thought a thread especially for the newbies might help. Eventually we all were newbies. :)
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Sticky Sticky

Postby fiddler » Sun Jan 10, 2010 7:26 am

I agree cah: a "sticky sticky", one that would be the very first thing newbies see, one with a short description of how to use the site: going to stickys first to get familiarized with major issues and terms, how the search function can then be used (such as searching for info before posting a question), general replying/posting etiquette, would probably be a big help and would make this site that much more valuable for everyone, in the long run
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Prof Zamboni's results - Neuro critique

Postby MarkW » Sun Jan 10, 2010 8:15 am

When presenting a business case I was trained to look at the case from the other person's viewpoint. So I suggest how a neurologist would read the paper cited by Cheer:

"CCSVI endovascular treatment significantly improved MS clinical outcome measures, especially in the RR group: the rate of relapse-free patients changed from 27% to 50% postoperatively (P < .001) and of MR Gad􏰥 lesions from 50% to 12% (P < .0001). The Multiple Sclerosis Functional Composite at 1 year improved significantly in RR patients (P < .008)"

Neuro think - this is a small, short term single centre study so the results are likely to be misleading. The study period is too short to assess any changes in MS as there is so much variation in MS. These patients are using DMDs so any change could be due to the drugs not the liberation procedure. What are surgeons and radiologists doing by interferring in MS.

The message I took from the paper was:
"The results of this pilot study warrant a subsequent randomized control study."

However this is not stopping me from trying to get tested for CCSVI in GB. So I can make my choice about treatment. I will also follow developments trying to envisage how a neuro may think about them.

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Helping Newbies

Postby MarkW » Sun Jan 10, 2010 8:19 am

I fully support making life easier for newbies. Anyone trying to design something could learn from http://CPn Help.org/.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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