CCSVI-Tracking.Com

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

CCSVI-Tracking.Com

Postby welshman » Tue Oct 26, 2010 5:10 pm

Looking back through the site, I note that CCSVI Tracking was mentioned back on Oct 18. They have just put a video on youtube which is a very good production of what info they are looking for from MS'ers treated for CCSVI, and what they do with that info, notably how they can "show" the medical woirld that this anecdotal info mounts up.

Please check out:

http://www.youtube.com/watch?v=HPYn2ZvkwQ8

As the previous post got no response, maybe their video will.
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Postby eve » Wed Oct 27, 2010 12:30 am

People did not reply to the post but the number of participants rose, so all is good. Great that you made a posting about it as well. First graphs for non participants are available, I hope many more will follow.

http://www.ccsvi-tracking.com/
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Postby tzootsi » Wed Oct 27, 2010 7:59 am

Excellent! This is exactly the kind of info people want to see, and has been so hard to come by!


http://www.ccsvi-tracking.com/
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Postby Cece » Wed Oct 27, 2010 8:36 am

I am hesitant on this. I imagine this is capturing the data from the first month post procedure. That is when everyone seems to have the best results. It may make the procedure seem better than it really is. We have to fully consider that these early improvements may be lost and that there are risks to this as well, including clotting off of the veins. When I see those graphs, I think it's a full go, but having participated here on the forum, I know there is much to be taken into consideration.

(The lack of follow-up care seems to be a very pressing concern at this time, as well as the wide variation in anticoagulants or antiplatelets prescribed post-procedure.)
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Postby welshman » Wed Oct 27, 2010 9:41 am

Agreed Cece, however I believe the tracking site wants monthly up-dates to give the true picture, whether that will happen is the biggest problem - if all the CCSVI'd patients gave the info and kept it up to date, then we would have the true picture of whether or not the treatment is truly beneficial or if it is a short term fix up.

It's the same as making regular appointments with your doctor so that they can monitor your personal health - the CCSVI Tracking info will be able to monitor the on-going success (or indeed failure) of this treatment - ALL IT NEEDS IS FOR ALL TREATED MS'ERS TO LOG ON AND INPUT THE DETAILS AND THEN KEEP IT UP TO DATE :!:
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Postby TvG » Thu Oct 28, 2010 9:12 am

You’re right welshman, we track the symptoms monthly and we start in the month before the treatment. The aim is to collect long term data.

We have a team in place to assist participants and to remind participants to enter their data if needed.

Data is collected regardless of the effect of the treatment and patients with positive, negative or no results are included.

We hope to contribute to the understanding of the effect of the liberation treatment and the factors that contribute to that effect.

People from 22 different countries are currently participating. We’re very happy with the positive response to the site and would like to encourage treated people to participate!
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Postby gibbledygook » Thu Oct 28, 2010 9:57 am

Wow. Hats off to those who have put such effort into developing the website and video.
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Postby eve » Fri Oct 29, 2010 12:03 am

I agree with Gibbledygook - hats off to TvG and Marsei. There must be so many hours of work in it. It is great to see the number of participants rising. I hope many people will join.
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Postby PCakes » Sat Oct 30, 2010 9:22 am

Is there a link to this site in CCSVI.org ? I don't see one..could there be?
I think the challenge is 'keeping it simple' and keeping everyone on the 'same page'.

Amazing efforts and results. Great site. Thank you.
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Postby Marsei » Mon Nov 08, 2010 8:29 am

New graphs on http://www.ccsvi-tracking.com
- Average
- Quality of Life
- Fatigue
- EDSS
- Mobility
- Coordination
- Vision
- Sensitivity
- Cognitive Functions
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Postby bruce123 » Mon Nov 08, 2010 11:27 am

I guess it's only me, but I feel uneasy about this site. It is very well put together visually but it lacks any important background information.

Unless I am missing something, there is no information one who is collecting this data. There are names but no information on who they work for.

They state why they are collecting it but there is no information on how they specifically plan on using it. If the data is not collected in a well documented fashion then the whole project is doomed to dismisal by the very people who could benifit from it. Data needs to be collected by well established procedures to insure its accuracy and make it scientifically valid, even if it is collected outside an established research study. I see no information on how this is insured.

What really makes me apprehensive is that on the page that has the video, it displays the logos and links to Dr. Zamboni's research organization as well as the International Neurological Society. There is no mention of being accociated with them is any way yet the logos imply support.

I'm not saying there is anything wrong with this project. It just leaves me with an uncomfortable feeling.

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Postby Marsei » Mon Nov 08, 2010 12:06 pm

CCSVI-Tracking is a private initiative, run by volunteers, fully independent and has no ties with medical specialists or the pharmaceutical industry.
The site has a link to the Facebookpage with more information.

The data are based on self-assessments. The assessments are comparative: patients compare their symptoms from one month to another, starting with the month before the treatment. This assures consistency on an ordinal scale.
Furthermore, some of the tests are standardised and/or can be performed by independent professionals.

The way this assessment (basically questionnaires) is setup, confirms to the standards in the social sciences. Research done by medical specialists on the effect of their treatment is very similar.
We feel that this is a practical way to obtain large scale data on the opinion of the patients of the effectiveness of their treatment.

The data is used to create personal and aggregated graphs. As soon as the number of participants is large enough for reliable results, all aggregated graphs will be fully public.

It is not our intention to suggest support for the tracking site from Dr. Zamboni's research organization and the International Neurological Society. The links are just included to refer people to these sites for further information. We will consider being more explicit about this.
Last edited by Marsei on Wed Nov 24, 2010 9:04 pm, edited 1 time in total.
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Postby David1949 » Mon Nov 08, 2010 1:50 pm

I hope you will take this as constructive criticism. The pale white letters on a black background are hard to see especially; "Members: 587 Participants: 378 Treatments: 236". For geezers like me and for people with MS whose vision may not be too good, those are really hard to read. Maybe black letters on a white background would be easier to see.
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Postby David1949 » Mon Nov 08, 2010 1:57 pm

By the way, does "sensitivity" mean heat sensitivity?
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Postby Marsei » Tue Nov 09, 2010 12:01 pm

David1949, thank you for your suggestions, we’ll discuss it with the development group.

'Sensitivity' is the category of different sensory disturbances.
'Heat sensitivity' is part of the category 'temperature sensitivity'.
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