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 …

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 …

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 …

[PDF][PDF] Information in Multiple Sclerosis: Do people with MS want to know about their disease?

EMV de Melo, RPCD Carneiro, MF Mendes - charcot-ms.org
DISCUSSION We identified the PwMS use medical consulting as the main source of
research MS; this result was similar with other study where 85% pwMS felt information …