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Friday, December 4, 2009

The Myelin Repair Foundation’s Views on Chronic Cerebrospinal Venous Insufficiency (CCSVI) & Multiple Sclerosis

December 4, 2009

The Myelin Repair Foundation shares your optimism surrounding recent observations of malformations in cerebrospinal veins associated with blood flow defects in MS patients. Much of the research has been published by Dr. Paolo Zamboni and colleagues at the Centre for Vascular Diseases, University of Ferrara. Dr. Zamboni and several other researchers involved in Chronic cerebrospinal venous insufficiency (CCSVI) research also serve on the Scientific Committee of the Fondazione Hilarescere whose website contains additional information about the research.

The most recent research article is published in the Journal of Neurology, Neurosurgery and Psychiatry. Based on high-resolution sonographic imaging techniques, this publication and earlier articles describe several categories of defects observed in MS patients as compared to control groups, including changes in the direction and velocity of cerebral blood outflow, narrowing of the internal jugular vein (stenosis), and malformations of the internal jugular and azygous veins. Intriguingly, the authors claim that the observed patterns of CCSVI may differentiate (Primary-Progressive) PPMS from (Relapsing-Remitting) RRMS and (Secondary-Progressive) SPMS disease courses.

Despite the recent excitement, caution should be exercised in interpreting these relatively early observations, particularly as they relate to clinical trials. Continued, large-scale diagnostic research studies are needed to confirm these initial findings, such as the trial underway at the Buffalo Neuroimaging Analysis Center. Most importantly, there is as yet no published evidence that correcting CCSVI will have long-term benefits for MS patients. We at the Myelin Repair Foundation will be interested in learning whether the potential interventions described in these articles will result in an improved myelination status with long-term positive impacts on clinical signs and symptoms.

Most encouraging is the active engagement of an MS patient community that is dedicated to learning about the research. Several websites have been created to distribute information to the MS patient community, including the patient-motivated “Venous Multiple Sclerosis CCSVI” website and the “CCSVI in Multiple Sclerosis” social network on Facebook. Extensive information and discussion forums can be found on these websites.


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