This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

I'm still trying to learn what got covered, do you think there will be video?

https://www.facebook.com/pages/CCSVI-in ... 9503156417 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.

I like that Dr. Franz Schelling was recognized!

PN

_________________
Albany 2010. Brooklyn 2011
Hurry up and wait.

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

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). 10 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

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.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

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). 10 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

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.

_________________
Marc
www.wheelchairkamikaze.com

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: 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.

my idea is that last years conferences were full of good news and results while this year not so much? Just a guess.

fox's results are very good news

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!

Heck Ya. from lurking on this forum for a few years it would seem that many peeps restenose within weeks.

_________________
Albany 2010. Brooklyn 2011
Hurry up and wait.

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.

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com