[HTML][HTML] People power or pester power? Multiple sclerosis, YouTube, and the liberation procedure

B O'Neill, F Mazanderani, J Powell - The Lancet, 2012 - thelancet.com
Background Venoplasty—dubbed the liberation procedure—has been proposed with the
controversial theory of chronic cerebrospinal venous insufficiency (CCSVI), as a possible …

[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 …

“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 …

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 …

Using Social Media to build a Counter-Power Movement: Multiple Sclerosis and CCSVI, a Case Study

A Bocchino - 2022 - westminsterresearch.westminster.ac …
The research is focused on a patient-based social media movement which advocated for
clinical research into a discovery rejected by key elements of the medical establishment …

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 …

Patient-reported benefits of extracranial venous therapy: British Columbia CCSVI Registry

AD Sadovnick, IM Yee, K Attwell-Pope… - Canadian Journal of …, 2017 - cambridge.org
Objective Chronic cerebrospinal venous insufficiency (CCSVI) has been hypothesized to be
a risk factor for multiple sclerosis (MS). Venoplasty has been proposed as a treatment for …

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 …

Contesting Medical Miracles: A Collective Action Framing Analysis of CCSVI and Venous Angioplasty (“Liberation Therapy”) for People With Multiple Sclerosis in …

SM Driedger, E Dassah… - Science Communication, 2018 - journals.sagepub.com
This study examines how a medically contested procedure for people living with multiple
sclerosis was framed by the news media and challenged by user-generated Facebook …

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 …