News: A recap of the web forum on controversial MS discovery

Yesterday’s web forum hosted by The National Multiple Sclerosis Society and The American Academy of Neurology to address a controversial


Yesterday’s web forum hosted by The National Multiple Sclerosis Society and The American Academy of Neurology to address a controversial new discovery in the world of multiple sclerosis has ignited a new discussion about possible treatments for people living with MS.

The forum, titled ‘What Do We Know About CCSVI?’ provided an opportunity for the public to learn more about chronic cerebrospinal venous insufficiency (CCSVI)’a condition that involves an abnormality in blood drainage from the brain and spinal cord‘and its potential impact on MS. The forum featured a panel of researchers including Dr. Paolo Zamboni, Director of the Vascular Diseases Center at the University of Ferrara, Italy; Dr. Robert Zivadinov of the University of Buffalo; Dr. Andrew Common, Radiologist in Chief at St. Michael’s Hospital, Toronto, and Dr. Aaron Miller, Director of the MS Center at Mount Sinai, New York. Dr. Zamboni was the first to study the relationship between CCSVI and MS. His preliminary findings are prompting large-scale studies to determine if correcting CCSVI could positively impact the MS disease process.

In his opening statements, Dr. Miller noted that there are currently a number of medications available to people with MS, including the first drug to improve walking, which started being marketed last month. Dr. Miller also acknowledged that despite the potential of new treatments on the horizon, there are still many questions: Should I be tested for CCSVI? Does CCSVI mean the standard treatments are meaningless? ‘I know that people with MS want answers now,’ he said. ‘But in order for the MS world to understand the long-term benefits and the risks of procedures related to CCSVI, it’s very important to balance the need for due speed with the understanding that we must apply rigorous scientific investigation, which can only come about through the conduct of properly controlled trials to understand this phenomenon.”

And rigorous scientific research is something that all the panelists seemed to agree on. Though Dr. Zamboni and Dr. Zivadinov’s preliminary findings in the relationship between CCSVI and MS are encouraging, their results were substantially different from one other, leading to more questions. And so, the real work is just beginning. Both researchers acknowledge the need for more extensive, controlled studies, in order to gain a better understanding of the impact of CCSVI. "We want to make sure that we provide the best information for all people with MS so that they can make informed decisions about their future," said Dr. Miller.

An international panel will conduct a review of research applications for CCSVI in May. Work is expected to begin in July.

Over 4,000 people from around the world logged on to watch the web forum live. If you missed the presentation, you can watch the video here.