[HTML][HTML] Scientific versus experiential evidence: discourse analysis of the chronic cerebrospinal venous insufficiency debate in a multiple sclerosis forum

J Koschack, L Weibezahl, T Friede, W Himmel… - Journal of Medical …, 2015 - jmir.org
Background The vascular hypothesis of multiple sclerosis (MS), called chronic cerebrospinal
venous insufficiency (CCSVI), and its treatment (known as liberation therapy) was …

[HTML][HTML] Sources of information and behavioral patterns in online health forums: observational study

F Sudau, T Friede, J Grabowski, J Koschack… - Journal of medical …, 2014 - jmir.org
Background Increasing numbers of patients are raising their voice in online forums. This shift
is welcome as an act of patient autonomy, reflected in the term “expert patient”. At the same …

Social media representation of chronic cerebrospinal venous insufficiency intervention for multiple sclerosis

S Ghahari, SJ Forwell - International Journal of MS Care, 2016 - meridian.allenpress.com
Background: We conducted a rigorous review of videos related to multiple sclerosis (MS)
and chronic cerebrospinal venous insufficiency (CCSVI) treatment posted by people with MS …

Internet-based social networking and its role in the evolution of chronic cerebrospinal venous insufficiency

C Vera, A Herr, K Mandato, M Englander… - Techniques in vascular …, 2012 - Elsevier
The Internet is being seen as a growing resource for health-related information for a large
number of patients. It is undeniable that its widespread presence has led to the growth of …

“Waiting for Science to Catch up with Practice”: an examination of 10-year YouTube trends in discussions of chronic cerebral spinal venous insufficiency treatment for …

SM Hynes, S Ghahari, SJ Forwell - Informatics for Health and …, 2019 - Taylor & Francis
Objective: The objective of this longitudinal study examined, first, whether people with
multiple sclerosis who previously advocated for angioplasty to treat chronic cerebral spinal …

[HTML][HTML] “People power” or “pester power”? YouTube as a forum for the generation of evidence and patient advocacy

F Mazanderani, B O'Neill, J Powell - Patient education and counseling, 2013 - Elsevier
Objective Venoplasty has been proposed, alongside the theory of chronic cerebrospinal
venous insufficiency (CCSVI), as a treatment for multiple sclerosis (MS). Despite concerns …

[HTML][HTML] Media, politics and science policy: MS and evidence from the CCSVI trenches

D Pullman, A Zarzeczny, A Picard - BMC medical ethics, 2013 - Springer
Abstract Background In 2009, Dr. Paolo Zamboni proposed chronic cerebrospinal venous
insufficiency (CCSVI) as a possible cause of multiple sclerosis (MS). Although his theory and …

[HTML][HTML] Caught in a no-win situation: discussions about CCSVI between persons with multiple sclerosis and their neurologists–a qualitative study

SM Driedger, R Maier, RA Marrie, M Brouwers - BMC neurology, 2017 - Springer
Background In recent years, shared decision making (SDM) has been promoted as a model
to guide interactions between persons with MS and their neurologists to reach mutually …

CCSVI-A. A call to clinicans and scientists to vocalise in an Internet age

AR Gafson, G Giovannoni - Multiple Sclerosis and Related Disorders, 2014 - Elsevier
Abstract 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 …

[HTML][HTML] The internet racing ahead of the scientific evidence: the case of" liberation treatment" for multiple sclerosis

YD Fragoso - Arquivos de neuro-psiquiatria, 2011 - SciELO Brasil
Multiple sclerosis (MS) is a chronic neurological disease that typically affects young adults. A
recent publication suggested that MS might originate from insufficient blood drainage in …