Listening to Lyrica: contested illnesses and pharmaceutical determinism

Barker, Kristin K.

doi:10.1016/j.socscimed.2011.05.055

Cited by 65 publications

(70 citation statements)

References 32 publications

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“…It has been argued (Barker 2005(Barker , 2011Conrad 2007) For these parents' groups, engaging with medical knowledge is conceived as a way for opening up an arena of negotiation with scientists, doctors, teachers and health professionals, and for scrutinising and ultimately acting upon social structures and processes which potentially lead to the exclusion of children with ADHD.…”

Section: Partnering With Health Authorities and Medical Professionalsmentioning

confidence: 99%

Evidence-based activism: Patients’, users’ and activists’ groups in knowledge society

2014

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This is a post-peer-review pre-copyedit version of an article published in BioSocieties. The denitive publisher-authenticated version Rabeharisoa, V., Moreira, T. and Akrich, M. (2014) 'Evidence-based activism : patients' organisations, users' and activist's groups in knowledge.', BioSocieties., 9 (2). pp. 111-128 is available online at: http://dx.doi.org/10.1057/biosoc.2014.2Additional information: Use policyThe full-text may be used and/or reproduced, and given to third parties in any format or medium, without prior permission or charge, for personal research or study, educational, or not-for-prot purposes provided that:• a full bibliographic reference is made to the original source • a link is made to the metadata record in DRO • the full-text is not changed in any way The full-text must not be sold in any format or medium without the formal permission of the copyright holders.Please consult the full DRO policy for further details. supported by the European Commission FP7. We warmly thank all patients' organisations which participated to our surveys. We owe a lot to our partners in this project, who took an active part in providing empirical data and analysis.3 Evidence-based activism: Patients' organisations, users' and activist's groups in knowledge society AbstractThis article proposes the notion of 'evidence-based activism' to capture patients' and health activists' groups' focus on knowledge production and knowledge mobilisation in the governance of health issues. It introduces empirical data and analysis on groups active in four countries (France, Ireland, Portugal, and the UK), and in four condition areas (rare diseases, Alzheimer's disease, ADHD -Attention Deficit Hyperactivity Disorder, and childbirth). It shows how these groups engage with, and articulate a variety of credentialed knowledge and 'experiential knowledge' with a view to explore concerned people's situations, to make themselves part and parcel of the networks of expertise on their conditions in their national contexts, and to elaborate evidence on the issues they deem important to address both at an individual and a collective level.This article argues that in contrast to health movements which contest institutions from the outside, patients' and activists' groups which embrace 'evidence-based activism' work 'from within' to imagine new epistemic and political appraisal of their causes and conditions. 'Evidence-based activism' entails a collective inquiry associating patients/activists and specialists/professionals in the conjoint fabrics of scientific statements and political claims.From a conceptual standpoint, 'evidence-based activism' sheds light on the on-going coproduction of matters of fact and matters of concern in contemporary technological democracies.

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Section: Partnering With Health Authorities and Medical Professionalsmentioning

confidence: 99%

Evidence-based activism: Patients’, users’ and activists’ groups in knowledge society

2014

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“…The Social Security Administration (SSA) "must ensure there is sufficient objective evidence to support a finding that the person's impairment so limits the person's functional abilities that it precludes him or her from performing any substantial gainful activity" (2). While this is never an easy task (3,4), it is particularly difficult with fibromyalgia, a contested disorder (5), and a type of illness "where sufferers claim to have a specific disease that many physicians do not recognize or acknowledge as distinctly medical" (6,7). High rejection rates may be found in complex musculoskeletal diagnoses and complex psychiatric diagnoses as compared to well-defined ones (8).…”

Section: Introductionmentioning

confidence: 99%

Social Security Work Disability and Its Predictors in Patients With Fibromyalgia

Wolfe

Walitt

Katz

et al. 2014

Arthritis Care & Research

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Objective. To determine prevalence and incidence of US Social Security Disability and Supplemental Security Income (SSD) in patients with fibromyalgia and to investigate prediction of SSD. Methods. Over a mean of 4 years (range 1-13 years), we studied 2,321 patients with physician-diagnosed fibromyalgia (prevalent cases) and applied modified American College of Rheumatology (ACR) 2010 research criteria to identify criteria-positive patients. Results. During the study, 34.8% (95% confidence interval [95% CI] 32.9 -36.8%) of fibromyalgia patients received SSD. The annual incidence of SSD among patients not receiving SSD at study enrollment was 3.4% (95% CI 3.0 -3.9%), and 25% were estimated to be work disabled at 9.0 years of followup. By comparison, the prevalence of SSD in rheumatoid arthritis (RA) patients with concomitant fibromyalgia was 55.6% (95% CI 54.3-57.0%) and was 42.4% in osteoarthritis (OA). By study conclusion, 31.4% of SSD awardees were no longer receiving SSD. In univariate models, incident SSD in patients with fibromyalgia was predicted by sociodemographic measures and by symptom burden; but the strongest predictor was functional status (Health Assessment Questionnaire disability index [HAQ DI]). In multivariable models, the HAQ DI and the Short Form 36-item health survey physical and mental component summary scores, but no other variables, predicted SSD. Fibromyalgia criteria-positive patients had more SSD, but the continuous scale, polysymptomatic distress index derived from the ACR criteria was a substantially better predictor of SSD than a criteria-positive diagnosis. Conclusion. The prevalence of SSD is high in fibromyalgia, but not higher than in RA and OA patients who satisfy fibromyalgia criteria. The best predictors of work disability are functional status variables.

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“…The first of these is the pharmaceutical industry. Since the 1930s, the move that led to the constitution of ADHD as a category has been associated with medication: the MBD (Minimal Brain Dysfunction) category which was adopted in the 1960s to replace other denominations such as Hyperkinesis -and was later replaced by ADD and ADHD -developed in a context where patients responded positively to treatments based initially on amphetamine and more recently, methylphenidate (Ritalin © ) (Rafalovich, 2001;Singh, 2006;Comstock, 2011); thus, success of the medication has been seen to validate the existence of the condition, in an example of what Barker (2011) terms "pharmaceutical determinism". In its search for ever-expanding markets, the pharmaceutical industry has been perceived as complicit in the medicalisation of ADHD, a dynamic which commentators argue is evidenced by rising prescriptions of drugs such as Ritalin © (Conrad, 2007).…”

Section: Introductionmentioning

confidence: 99%

“…Confronted with narratives of parental blame which have frequently characterised ADHD in psychodynamic discourse as well as in the popular media (Malacrida, 2002;Singh, 2004;Bennett, 2007), parents seek medical recognition as a means of gaining validity and legitimacy. Participation of parents in self-help groups allows them to reduce doubt and uncertainty when confronted with a "contested illness" (Barker, 2011), to construct a shared view on the disorder and to circulate knowledge on therapeutic possibilities.…”

Section: Introductionmentioning

confidence: 99%

Attention deficit hyperactivity disorder in France and Ireland: Parents’ groups’ scientific and political framing of an unsettled condition

et al. 2014

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Attention Deficit Hyperactivity Disorder (ADHD) is an unsettled condition whose history is characterised by controversy among medical professionals. Its emergence has frequently been interpreted as an example of the growing 'medicalisation' of society and the individualisation of social issues. This article examines how groups representing children with ADHD in France and Ireland engage within this contested medical domain to develop different politics of knowledge around the disorder which become visible in their 'epistemic efforts'. These efforts emerge from, and enact, groups' understandings of ADHD as a condition, and frame their development of a politics of healthcare as a basis for articulating claims to appropriate services and treatment. We show how, in Ireland, organisations remain committed to a biomedical approach to ADHD, although their practical efforts are oriented towards complementing medication with nonpharmaceutical treatments. In France, the key parents' group opposes any paradigm that focuses exclusively on one aspect of the disorder, be it social, psychological or neurological; rather, it struggles to 'open up' the scientific domain of ADHD. Our empirical material therefore enables us to demonstrate patients' organisations' politics of knowledge as situated practices which aim to reshape the different networks of expertise on ADHD that exist in each country, and to explore medicalisation as a complex set of processes which is neither a solution to parents' problems, nor an end point for their actions.

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Listening to Lyrica: contested illnesses and pharmaceutical determinism

Cited by 65 publications

References 32 publications

Evidence-based activism: Patients’, users’ and activists’ groups in knowledge society

Evidence-based activism: Patients’, users’ and activists’ groups in knowledge society

Social Security Work Disability and Its Predictors in Patients With Fibromyalgia

Attention deficit hyperactivity disorder in France and Ireland: Parents’ groups’ scientific and political framing of an unsettled condition

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