What did not get covered at ISNVD?

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What did not get covered at ISNVD?

Postby Cece » Fri Feb 24, 2012 4:07 pm

This will probably be an incomplete list, but I wanted to start it. What did not covered at ISNVD?

There was no live demonstration of a CCSVI procedure.

There was no neurointerventional radiologist. There was no discussion of the venous sinuses.

There was no completed large-scale, university research. Brave Dreams may be getting underway, but completion is a long way off.

There was no discussion of the condylar emissary veins, and what can be gleaned by looking at these veins.
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Re: What did not get covered at ISNVD?

Postby Billmeik » Fri Feb 24, 2012 6:10 pm

I'm still trying to learn what got covered, do you think there will be video?
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Re: What did not get covered at ISNVD?

Postby Cece » Fri Feb 24, 2012 6:20 pm

https://www.facebook.com/pages/CCSVI-in ... 9503156417
All sessions were recorded and the ISNVD will be making a decision about ordering the CD’s – the cost – and to whom they will be available. Please understand the Scientific Sessions were attended by medical students and professionals who paid a significant amount of money to attend and receive CME credits – this needs to be taken into account when offering recordings to another audience.
What other conferences have laymen wanting to watch the vids? It is something to celebrate that there is this intense interest in CCSVI. We are better patients when we are better informed. I would like it if the videos were made available to all, at no cost.
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Re: What did not get covered at ISNVD?

Postby PointsNorth » Fri Feb 24, 2012 8:36 pm

I like that Dr. Franz Schelling was recognized!

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Re: What did not get covered at ISNVD?

Postby drsclafani » Fri Feb 24, 2012 11:44 pm

Cece wrote:This will probably be an incomplete list, but I wanted to start it. What did not covered at ISNVD?

There was no live demonstration of a CCSVI procedure.

There was no neurointerventional radiologist. There was no discussion of the venous sinuses.

There was no completed large-scale, university research. Brave Dreams may be getting underway, but completion is a long way off.

There was no discussion of the condylar emissary veins, and what can be gleaned by looking at these veins.


This meeting was not procedure focused. still lots more on MRI
there were neurosurgeons, there was a talk on stenting of the sinuses
trials take a long long time
schelling and I are alone on this one
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Patient's Needs - covered at ISNVD?

Postby MarkW » Sun Feb 26, 2012 9:45 am

I nearly joined the conference but practical issues stepped in (my wife's work). If I had been there I would have been very vocal about patient's needs. The conference appears to have forgotten about pwMS and other neuro diseases, very sad.
A simple series of questions on CCSVI syndrome asks:
Who, Why, When, What, and How.
Who has CCSVI syndrome ? - pwMS and ????
When is CCSVI syndrome seen ? at birth? 5 years after MS?
What is seen in CCSVI syndrome ? stenosis of vein valves? veins? Which veins?
Why does CCSVI syndrome develop ? Least important for patients but good for reseachers !!!!
How is CCSVI syndrome seen ? Screening test, full diagnosis.

ISNVD must decide if it is a patient focussed or research focussed organisation.
Your critical friend,
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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Re: What did not get covered at ISNVD?

Postby cheerleader » Sun Feb 26, 2012 11:00 am

ISNVD is research focused, it is for the doctors.
CCSVI Alliance is for patients, and co-sponsored the Patients Day.
www.ccsvi.org

What did not get covered? There was NO press coverage. There was a press conference held, and I have not seen one single article on google news. I know Anne Kingston was there and will be writing for Macleans, but that's about it.
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dx dual jugular vein stenosis (CCSVI) 4/09
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Patient's Needs - covered at ISNVD?

Postby MarkW » Mon Feb 27, 2012 12:12 pm

MarkW wrote:ISNVD must decide if it is a patient focussed or research focussed organisation.
Your critical friend,
MarkW


To be clear:
ISNVD must decide if the papers and discussions at conference should be focussed on refining therapies which may be used on patients or focussed on research around CCSVI syndrome.

It appears to me that the majority of papers were focussed on research around CCSVI syndrome. I suggest that the leadership of ISNVD consider patients as a priority until therapies for CCSVI syndrome are in mainstream medicine. Then conduct the research to answer the question of 'why'. The first approach is often used in the pharmaceutical industry, with the focus on delivering a marketible solution for patients. Academic research usually wants to answer 'why it works' before answering 'does it work'.

Your critical friend,
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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Re: What did not get covered at ISNVD?

Postby marcstck » Mon Feb 27, 2012 6:41 pm

cheerleader wrote:ISNVD is research focused, it is for the doctors.
CCSVI Alliance is for patients, and co-sponsored the Patients Day.
http://www.ccsvi.org

What did not get covered? There was NO press coverage. There was a press conference held, and I have not seen one single article on google news. I know Anne Kingston was there and will be writing for Macleans, but that's about it.
cheer



You're absolutely right, Joan. I'm always searching for MS related news articles, and didn't see anything about ISNVD. The continued silence of the press in the US is deafening.
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Re: Patient's Needs - covered at ISNVD?

Postby Cece » Mon Feb 27, 2012 7:12 pm

Didn't Dr. Sclafani mention that ISNVD was not procedure-focused, and that around 1 in 5 attendees were IRs?
Here is their Who We Are statement:
Who We Are
The International Society for NeuroVascular Disease is a non-profit professional association devoted to furthering the development of research for neurovascular related diseases - including CCSVI. The society will hold annual scientific meetings and sponsor educational and scientific workshops. Target medical groups include, but are not limited to, Vascular Surgeons, Interventional Radiologists, Neurologists, Neurosurgeons, Physicists, and Technologists.
http://www.isnvd.org/
They define themselves as research-focused, which would include research into techniques but also into the "why it works" side.
I like that they cast a broad net. Proceduralists do need additional more focused meetings. Perhaps SIR fills that need? Or Dr. Sclafani's NY symposium?

Who, what, where, when, how and why! All good questions. They can be asked of CCSVI itself, and they can be asked of the treatment of CCSVI (who benefits/patient selection; what is being treated; where; when/how often should the treatment be repeated or how early in the disease course; how/all the techniques, including ivus; and why/does it result in benefits.)

I didn't pick up on the silence in the press over ISVND, but now that Joan mentions it, it is rather glaring.
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Re: What did not get covered at ISNVD?

Postby Billmeik » Tue Feb 28, 2012 9:39 am

my idea is that last years conferences were full of good news and results while this year not so much? Just a guess.
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Re: What did not get covered at ISNVD?

Postby Billmeik » Fri Mar 02, 2012 11:38 am

fox's results are very good news
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Re: What did not get covered at ISNVD?

Postby Cece » Fri Mar 02, 2012 12:44 pm

Was there press coverage at last year's ISNVD? I can't remember. I remember that CCSVI got a lot of press attention at last year's ISET, and not as much at this year's.

In a different thread Dr. Sclafani said something to the effect that one thing not covered at ISNVD was the entire subject of restenosis. That's an important topic!
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Re: What did not get covered at ISNVD?

Postby PointsNorth » Fri Mar 02, 2012 5:58 pm

Cece wrote:
In a different thread Dr. Sclafani said something to the effect that one thing not covered at ISNVD was the entire subject of restenosis. That's an important topic!


Heck Ya. from lurking on this forum for a few years it would seem that many peeps restenose within weeks.
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Re: Patient's Needs - covered at ISNVD?

Postby drsclafani » Sun Mar 04, 2012 11:55 pm

MarkW wrote:I nearly joined the conference but practical issues stepped in (my wife's work). If I had been there I would have been very vocal about patient's needs. The conference appears to have forgotten about pwMS and other neuro diseases, very sad.
A simple series of questions on CCSVI syndrome asks:
Who, Why, When, What, and How.
Who has CCSVI syndrome ? - pwMS and ????
When is CCSVI syndrome seen ? at birth? 5 years after MS?
What is seen in CCSVI syndrome ? stenosis of vein valves? veins? Which veins?
Why does CCSVI syndrome develop ? Least important for patients but good for reseachers !!!!
How is CCSVI syndrome seen ? Screening test, full diagnosis.

ISNVD must decide if it is a patient focussed or research focussed organisation.
Your critical friend,
MarkW

Mark you ask good questions,
it is pretty clear to this humble plumber that the researchers held the day. But everything about ccsvi is about researching a proposal that is not necessarily intuitive. Research is definitely required. basic information is important to those entering this field of treatment.
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