Information Flows in Patient-Oriented Online Media and Scientific Research

P Makedonski, T Friede, J Grabowski… - Social Network …, 2017 - taylorfrancis.com
This chapter examines the so-called liberation treatment in multiple sclerosis (MS) as a
suitable case for an exemplary analysis of the information flow in patient-oriented online …

[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 …

Communication for" patient liberation: the role of new media in the case of chronic cerebrospinal venous insufficiency (CCSVI) in multiple sclerosi (MS)

I Matteucci - Communication for" patient liberation: the role of new …, 2021 - torrossa.com
The article examines the opportunities for change in new media narratives. In this case new
media become tools calling for “patient liberation”. A case-based qualitative study was …

[图书][B] A'Controversial'Decision: Multiple Sclerosis Patients, Online Medical Knowledge and the CCSVI Procedure

JE Kelly - 2012 - library-archives.canada.ca
Abstract<? Pub Inc> This thesis examines how people with multiple sclerosis (MS) used
internet resources, including personal narratives on patient-based websites and medical …

Efficiency of Medical Oversight on an MS Web Community: A Factorial Analysis (P1. 342)

L Lavorgna, DS Manuela, P Montella, D Buonanno… - Neurology, 2016 - AAN Enterprises
OBJECTIVE: The aim of the present study was to investigate whether the supervision of a
virtual environment by MS experts improves the quality of information exchange among …

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 …

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 …

[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 …

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 …