People with MS often read extensively about the CCSVI theory and its development on Internet sites, and a search for "liberation procedure" in Google as of August 2010 yielded more than 2.5 million hits. The Internet has also been used to advertise places where stenting for CCSVI is performed, and to more generally disseminate all the information on CCSVI. Social media have served patient groups in their attempt to pressure official bodies to make decisions favoring funding of clinical trials, or the public coverage of stenting and venoplasty as treatments of MS. Likewise, social media have been accused of creating a division between CCSVI supporters and those who say it does not work. Indeed, they have been repeatedly used by advocates of the CCSVI theory to attack those who were more critical or cautious, most commonly with accusations of being tainted due to commercial relationships with pharmaceutical companies.Many patients who have had the surgical procedure report their improvements on social media websites such as structured patient databases and YouTube. Such stories are only anecdotal evidence of efficacy, and do not constitute a scientific proof of the efficacy of the treatment since, for example, those who have had a positive result are more prone to post their cases than those who had little or no improvement, and the reported improvements in patients condition can be attributed to the placebo effect.
Organizations
Several national and international organizations have been created to further the research and dissemination of the CCSVI theory, such as the International Society for Neurovascular Disease and the National CCSVI Society of Canada. They are working together with already existing organizations like the International Union of Phlebology (Union internationale de phlébologie-UIP- in French, its original working language) of which Zamboni is a member. The UIP for example proposed that developmental abnormalities were the primary cause of CCSVI. Research
There were further studies aimed at clarifying if there is a relationship between MS and CCSVI. In particular, the US and Canadian MS societies launched seven such studies. Recent reviewers have shown "no significant difference in prevalence of CCSVI in people with MS compared to people without MS". In 2014 imaging criteria for venous abnormalities were published to help with research on this topic. See also
Chronic venous insufficiency
Pathophysiology of multiple sclerosis
Vascular myelopathy

References
Further reading


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