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.

译文

:Paulo Zamboni于2008年率先提出了用于治疗多发性硬化症(MS)的“解放程序”,声称MS是由静脉引流异常引起的,他将其称为慢性脑脊髓静脉功能不全(CCSVI)。通过社交媒体“病毒式传播”后,CCSVI在社会政治和科学方面都引起了很大争议。 2012年底,关于“ CCSVI综合征”的科研论文仅发表了56篇;但是,在搜索“慢性脑脊髓静脉功能不全”或CCSVI一词时,在Google上的点击量超过1,150,000。目前尚不清楚科学界对CCSVI的反应是否受到Zamboni原始文章的影响,对CCSVI的“社会现象”的反应性反应,还是受这两个因素之间复杂的相互作用影响。此外,尚未对这种“社会现象”的流行病学进行调查。 PubMed文献搜索显示,按Google趋势衡量,对CCSVI的最大公众兴趣是在只有30%的主要文章和11%的负面研究提交发表后才发生的。社会流行病的重心已经在意大利和加拿大之间划分。尽管加拿大科学家尚未在CCSVI上发表主要文章,但其在Google趋势中的搜索量却占76%。这种公共利益很可能是由媒体和政治机会主义引发的,而与科学界脱节的社交媒体也推动了这种公共利益。我们的发现要求临床医生和科学家齐心协力,与公众互动,以确保在适当的情况下查看和解释通过社交媒体进行的科学发现的吸收和传播。还将讨论如何实现此目的的示例。

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