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.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.
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.
MarkW wrote:ISNVD must decide if it is a patient focussed or research focussed organisation.
Your critical friend,
cheerleader wrote:ISNVD is research focused, it is for the doctors.
CCSVI Alliance is for patients, and co-sponsored the Patients Day.
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.
http://www.isnvd.org/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.
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!
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,
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