CCSVI a call to engage. #MSBlog #MSResearch
"It took sometime to get this article written, but we couldn't pass up the opportunity of using Google Trends to study the CCSVI epidemic. CCSVI has behaved like a typical meme (infectious idea) and spread across the globe with epicenters in Canada and Italy."
"Arie Gafson a young academic fellow volunteered to do the work and write-up the paper. Arie has done very well and captured the essence of the phenomenon of CCSVI. We make recommendations for how clinicians and scientists should deal with phenomena like CCSVI in the future. In essence we need to engage the community and understand that a patronizing attitude will not be tolerated."
Gafson & Giovannoni. CCSVI-A. A call to clinicans and scientists to vocalise in an Internet age. MSARD published online 21 November 2013.
In 2008, Paulo Zamboni pioneered the ‘liberation procedure’ for treating multiple sclerosis (MS), claiming that MS is caused by an abnormality of venous drainage which he called chronic cerebrospinal venous insufficiency (CCSVI). CCSVI has been very controversial, both socio-politically and scientifically after going ‘viral’ via social media. In late 2012, only 56 original scientific research papers had been published on the ‘CCSVI syndrome’; however, over 1,150,000 hits on Google existed when searching for the term ‘chronic cerebrospinal venous insufficiency’ or CCSVI. It is unclear whether the scientific community’s response to CCSVI was influenced by Zamboni's original articles, a reactionary response to the ‘social phenomenon’ of CCSVI or indeed a complex interplay between both these factors. Furthermore, the epidemiology of this ‘social phenomenon’ remains un-investigated. A PubMed literature search revealed that the greatest level of public interest in CCSVI, as measured by Google Trends, occurred after only 30% of primary articles and 11% of negative studies were submitted for publication. The epicentre of social epidemic has been divided between Italy and Canada. Whilst Canadian scientists had yet to publish a primary article on CCSVI, it had a relative 76% search volume on Google Trends. It is likely that this public interest was sparked by media and political opportunism and fuelled by social media that was disconnected from the scientific community. Our findings call for a concerted effort for clinicians and scientists to engage with the public to ensure that uptake and spread of scientific discoveries via social media are viewed and interpreted in an appropriate context. Examples of how this may be achieved will also be discussed.
CoI: this is our work