ArticleBMC medical ethics2013
"Media, politics and science policy: MS and evidence from the CCSVI Trenches".
Article in BMC medical ethics, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
22 citing papers in PubMed, 42 citations in OpenAlex.
- The fluctuating natural course of CCSVI in MS patients and controls, a prospective follow-up.PloS one · 2013Trial
- A case series of infectious complications in medical tourists requiring hospital admission or outpatient home parenteral therapy.Journal of the Association of Medical Microbiology and Infectious Disease Canada = Journal officiel de l'Association pour la microbiologie medicale et l'infectiologie Canada · 2022Article
- Public Engagement and Neurology: An Update.Brain sciences · 2021Review
- Cardiometabolic risk in polycystic ovary syndrome.Endocrine connections · 2018Review
- Reflections on translation: Views of participants in a multisite Canadian CCSVI clinical trial.Neurology. Clinical practice · 2018Review
- Resilience, trust, and civic engagement in the post-CCSVI era.BMC health services research · 2018Article
- Caught in a no-win situation: discussions about CCSVI between persons with multiple sclerosis and their neurologists - a qualitative study.BMC neurology · 2017Article
- Public Funding and Open Access to Research: A Review of Canadian Multiple Sclerosis Research.Journal of medical Internet research · 2017Review
- The Impact of Online Social Networks on Health and Health Systems: A Scoping Review and Case Studies.Policy & internet · 2015Article
- Gordie Howe's Stem Cell 'Miracle': A Qualitative Analysis of News Coverage and Readers' Comments in Newspapers and Sports Websites.Stem cell reviews and reports · 2015Article
- Scientific Versus Experiential Evidence: Discourse Analysis of the Chronic Cerebrospinal Venous Insufficiency Debate in a Multiple Sclerosis Forum.Journal of medical Internet research · 2015Article
- Navigating physicians' ethical and legal duties to patients seeking unproven interventions abroad.Canadian family physician Medecin de famille canadien · 2015Article
- Translating evidence into impact: The case of 'supermagnet' desk toys.Paediatrics & child health · 2015Article
- Predictors of chronic cerebrospinal venous insufficiency procedure use among older people with multiple sclerosis: a national case-control study.BMC health services research · 2015Article
- Curbing Inflammation in Multiple Sclerosis and Endometriosis: Should Mast Cells Be Targeted?International journal of inflammation · 2015Review
- "Liberation treatment" for chronic cerebrospinal venous insufficiency in multiple sclerosis: the truth will set you free.Brain and behavior · 2015Review
- "I knew what was going to happen if I did nothing and so I was going to do something": faith, hope, and trust in the decisions of Canadians with multiple sclerosis to seek unproven interventions abroad.BMC health services research · 2014Article
- Validity of the diagnostic criteria for chronic cerebrospinal venous insufficiency and association with multiple sclerosis.CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne · 2014Article
- Navigating the "liberation procedure": a qualitative study of motivating and hesitating factors among people with multiple sclerosis.Patient preference and adherence · 2014Article
- Potential involvement of the extracranial venous system in central nervous system disorders and aging.BMC medicine · 2013Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIn 2009, Dr. Paolo Zamboni proposed chronic cerebrospinal venous insufficiency (CCSVI) as a possible cause of multiple sclerosis (MS). Although his theory and the associated treatment ("liberation therapy") received little more than passing interest in the international scientific and medical communities, his ideas became the source of tremendous public and political tension in Canada. The story moved rapidly from mainstream media to social networking sites. CCSVI and liberation therapy swiftly garnered support among patients and triggered remarkable and relentless advocacy efforts. Policy makers have responded in a variety of ways to the public's call for action. DISCUSSION: We present three different perspectives on this evolving story, that of a health journalist who played a key role in the media coverage of this issue, that of a health law and policy scholar who has closely observed the unfolding public policy developments across the country, and that of a medical ethicist who sits on an expert panel convened by the MS Society of Canada and the Canadian Institutes of Health Research to assess the evidence as it emerges. SUMMARY: This story raises important questions about resource allocation and priority setting in scientific research and science policy. The growing power of social media represents a new level of citizen engagement and advocacy, and emphasizes the importance of open debate about the basis on which such policy choices are made. It also highlights the different ways evidence may be understood, valued and utilized by various stakeholders and further emphasizes calls to improve science communication so as to support balanced and informed decision-making.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.