discourse analysis – American ME and CFS Society

Epistemic in/justice in patient participation. A discourse analysis of the Dutch ME/CFS Health Council advisory process

Abstract:

In healthcare settings, patient participation is increasingly adopted as a possible remedy to ill people suffering from ‘epistemic injustices’ – that is to their unfair harming as knowers. In exploring and interpreting patient participation discourses within the 2013-2018 Dutch Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) Health Council advisory process, this paper assesses the epistemological emancipatory value of this participatory practice. It reveals that in the analysed case, patient representatives predominantly offer biomedical knowledge about ME/CFS. They frame this condition as primarily somatic, and accordingly, perceive appropriate diagnostic criteria, research avenues and treatment options as quantifiable, objectifiable and explicitly non-psychogenic.

This paper argues that such a dominant biomedical patient participatory practice is ambiguous in terms of its ability to correct epistemic injustices towards ill people. Biomedicalized patient participation may enhance people’s credibility and their ability to make sense of their illness, but it may also undermine their valid position within participatory practices as well as lead to (sustaining) biased and reductive ideas about who ill people are and what kind of knowledge they hold. The final section of this paper offers a brief reflection on how to navigate such biomedicalized participatory practices in order to attain more emancipatory ones.

Source: de Boer ML. Epistemic in/justice in patient participation. A discourse analysis of the Dutch ME/CFS Health Council advisory process. Sociol Health Illn. 2021 Jun 17. doi: 10.1111/1467-9566.13301. Epub ahead of print. PMID: 34137042. https://pubmed.ncbi.nlm.nih.gov/34137042/

The experience of sleep in chronic fatigue syndrome: A qualitative interview study with patients

Abstract:

OBJECTIVES: Sleep disturbances are common in chronic fatigue syndrome (CFS), and one of the key symptom complaints, yet it has been neglected by previous qualitative research. The aim was to explore the specific role of sleep in patients’ experience of their illness.

DESIGN: A qualitative semi-structured interview format facilitated a detailed and open exploration of sleep, and the extent to which its management and problems were linked to the lived experience of CFS.

METHODS: Eleven semi-structured interviews were conducted with individuals with CFS. Data were transcribed verbatim and analysed thematically, to explore and describe patients’ experience of their sleep, and its impact on their condition.

RESULTS: Sleep emerged as a key aspect of the illness experience, and its management and effect on daytime functioning was a central pre-occupation for all 11 participants; all of them saw sleep as playing a critical role in their illness through either maintaining or exacerbating existing symptoms. Exploration of individual experiences presented three overarching themes: (1) sleep pattern variability over illness course and from day to day; (2) effect of sleep on daytime functioning; and (3) attempts at coping and sleep management.

CONCLUSIONS: Each patient with CFS has a unique experience of sleep. Despite the differing narratives regarding the role of sleep in CFS, all participants held the belief that sleep is a vital process for health and well-being which has had a direct bearing on the course and progression of their CFS. Also, every participant regarded their sleep as in some way ‘broken’ and in need of management/repair. Patients’ insights demonstrate sleep-specific influences on their CFS, and the impact of disturbed sleep should be a consideration for clinical and research work.

STATEMENT OF CONTRIBUTION: What is already known on this subject? Sleep disturbances are common in CFS, and one of the key symptom complaints, yet it has been neglected by previous qualitative research. Ontology of CFS is a matter of dispute, with models ranging from the biological to the psychological competing to explain symptomatology in this illness. A qualitative study has the potential to add some clarity to the debate by making the patients’ lived experience of the condition, and their own understanding of it, the focus of research. What this study adds? Coping and attempts at managing sleep problems in CFS adds to the ‘illness burden’ experienced by patients. Disturbed sleep is universally seen by patients with CFS as impacting on other daytime symptoms. Broken sleep may contribute to a biopsychosocial cycle that serves to maintain this illness.

Source: Gotts ZM, Newton JL, Ellis JG, Deary V. The experience of sleep in chronic fatigue syndrome: A qualitative interview study with patients. Br J Health Psychol. 2016 Feb;21(1):71-92. doi: 10.1111/bjhp.12136. Epub 2015 Feb 26. https://www.ncbi.nlm.nih.gov/pubmed/25728396

The Nature of Fatigue in Chronic Fatigue Syndrome

Abstract:

In this article, we report the findings of our study on the nature of fatigue in patients diagnosed with chronic fatigue syndrome. Using ethnoscience as a design, we conducted a series of unstructured interviews and card sorts to learn more about how people with chronic fatigue syndrome describe fatigue. Participants (N = 14) described three distinct domains: tiredness, fatigue, and exhaustion. Most participants experienced tiredness prior to diagnosis, fatigue during daily life, and exhaustion after overexertion. We also discuss participants’ ability to adapt to a variety of stressors and prevent shifts to exhaustion, and relate our findings to stress theory and other current research. Primary strategies that promoted adaptation to stressors included pacing and extended rest periods. These findings can aid health care professionals in detecting impending shifts between tiredness, fatigue, and exhaustion and in improving adaptive strategies, thereby improving quality of life.

Source: Olson K, Zimka O, Stein E. The Nature of Fatigue in Chronic Fatigue Syndrome. Qual Health Res. 2015 Oct;25(10):1410-22. doi: 10.1177/1049732315573954. Epub 2015 Feb 26. https://www.ncbi.nlm.nih.gov/pubmed/25721719

“United We Stand”: Framing Myalgic Encephalomyelitis in a Virtual Symbolic Community

Abstract:

In this article, we report on a study that seeks to explore how the contested chronic condition myalgic encephalomyelitis (ME), one of the current medical diagnoses for medically unexplained long-term exhaustion, is negotiated within the context of Norwegian internet sites.

From an analysis of discussions on 14 internet forums sustained by and for people living with ME, we seek to understand how their online activity sustains a virtual symbolic community (VSC).

After exploring the content on these sites, we identified four discursive domains, or fields of conversation, that are demarcated by a discursive frame, or norms, values, and goals that define and reinforce the boundaries of the community. Interpreting discursive domains and their discursive frame provides insight not only to the culture of the ME VSC but also to its role in an international social health movement, including its potential for becoming politically influential.

Source: Lian OS, Nettleton S. “United We Stand”: Framing Myalgic Encephalomyelitis in a Virtual Symbolic Community. Qual Health Res. 2015 Oct;25(10):1383-94. doi: 10.1177/1049732314562893. Epub 2014 Dec 8. https://www.ncbi.nlm.nih.gov/pubmed/25488934

A discourse analytic study of ME/CFS (Chronic Fatigue Syndrome) sufferers’ experiences of interactions with doctors

Abstract:

The aetiology, symptoms, diagnosis and treatment of ME/CFS are controversial. Doctors and sufferers often have opposing perspectives, leading to problematic clinical interactions. We use discourse analysis to explore ME/CFS sufferers’ descriptions of interactions with medical professionals taken from an asynchronous, online sufferers’ support group. Participants described themselves as experiencing limited medical care and attention but restricted criticisms to ‘legitimate’, pragmatic or ancillary matters such as a clinicians’ unwillingness to prescribe untested treatments. Participants also described themselves as active in seeking a resolution to their problems. They thus attended to possible negative attributions of being ‘complaining’ or unmotivated to seek recovery.

Source: Guise J, McVittie C, McKinlay A. A discourse analytic study of ME/CFS (Chronic Fatigue Syndrome) sufferers’ experiences of interactions with doctors. J Health Psychol. 2010 Apr;15(3):426-35. Doi: 10.1177/1359105309350515. https://www.ncbi.nlm.nih.gov/pubmed/20348363

Using multiple sources of knowledge to reach clinical understanding of chronic fatigue syndrome

Abstract:

PURPOSE: Chronic fatigue syndrome (CFS), or myalgic encephalitis (ME), is a contentious condition and often a diagnosis of exclusion. Current policy in the United Kingdom recommends management in primary care. We explored how patients with CFS/ME and family physicians understand this condition and how their understanding might affect the primary care consultation.

METHODS: We undertook a qualitative study with patients and family physicians from North West England participating in a primary care-based randomized controlled trial (FINE Trial). Data were collected through purposive sampling and in-depth semistructured interviews with 24 patients and 14 family physicians. We analyzed interview transcripts using constant comparison methods.

RESULTS: Family physicians access social and cultural knowledge to reach a clinical understanding of CFS/ME and its management. Patients recognize the difficulties family physicians encounter in understanding their symptoms and access similar nonclinical sources of information. We suggest that both patients and physicians use biomedical discourse within the consultation: the physician to maintain the position as an expert, the patient to engage the physician.

CONCLUSIONS: Family physicians obtain information about CFS/ME from their nonprofessional world, which they incorporate into their professional realm. Patients and physicians describe the use of the discourse of science within consultations about CFS/ME. This form of shared understanding could lead to a positive collaborative interaction. Family physicians need a biomedical, evidence-based knowledge about CFS/ME. There is potential to use the rich knowledge base that patients can bring to consultations in training initiatives directed at family physicians.

Source: Chew-Graham CA, Cahill G, Dowrick C, Wearden A, Peters S. Using multiple sources of knowledge to reach clinical understanding of chronic fatigue syndrome. Ann Fam Med. 2008 Jul-Aug;6(4):340-8. doi: 10.1370/afm.867. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2478494/ (Full article)

The ME Bandwagon and other labels: constructing the genuine case in talk about a controversial illness

Abstract:

This paper examines the discourse of morality surrounding ‘ME’ as a contested illness, looking at how GPs and ME group members differentiate between the category of ‘genuine ME sufferer’ and the ‘bandwagon’. ‘Jumping on the bandwagon’ is a metaphor commonly used to describe the activity of ‘following the crowd’ in order to gain an advantage. This discursive analysis shows how ‘bandwagon’ categories are constructed in contrast to the category of genuine sufferer.

People who jump on the bandwagon are accused of matching their symptoms to media stereotypes, adopting trendy illnesses (‘fads’), or using ‘tickets’ to avoid facing up to psychological illnesses. Both GPs and ME group members construct a differential moral ordering of physical and psychological illness categories, where the latter assumes a lesser status. The paper concludes that against a background of medical uncertainty and controversy, the ‘bandwagon’ and other derogatory labels function as contrast categories that work to establish the existence of ‘ME’ as a genuine illness.

Source: Horton-Salway M. The ME Bandwagon and other labels: constructing the genuine case in talk about a controversial illness. Br J Soc Psychol. 2007 Dec;46(Pt 4):895-914. https://www.ncbi.nlm.nih.gov/pubmed/17535450

Can the social model explain all of disability experience? Perspectives of persons with chronic fatigue syndrome

Abstract:

OBJECTIVE: The social model of disability has had a major influence on the academic field of disability studies and on contemporary understandings of the causes and experience of disability. The purpose of this study was to examine the adequacy of the social model for explaining the disability experience of persons with chronic fatigue syndrome (CFS).

METHODS: This qualitative study examined the experiences of 47 adults with CFS participating in a research project that aimed to evaluate a participant-designed rehabilitation program. Data were aggregated from focus group interviews, open-ended questionnaires, progress notes, and from a program evaluation questionnaire. Data analysis was based on a grounded theory approach and used triangulation of multiple data sources and member checks to assure dependability of findings.

RESULTS: Four themes emerged from the analysis: (1) minimization and mistrust of the disability; (2) negative experiences of impairment; (3) lack of identification with the disability community; and (4) the focus on advocacy as a quest for legitimacy. These themes varied in the extent to which they conformed to the principles set forth by the social model.

CONCLUSIONS: Although the social model has important contributions to lend to occupational therapy practice, it is important to recognize that it may not capture the full reality of disability. In particular, the social model has serious limitations in describing the disability experience of individuals with disabilities who do not have visibly obvious disabilities and whose impairments do not conform to the traditional viewpoint of disability.

Source: Taylor RR. Can the social model explain all of disability experience? Perspectives of persons with chronic fatigue syndrome. Am J Occup Ther. 2005 Sep-Oct;59(5):497-506. http://www.ncbi.nlm.nih.gov/pubmed/16268016

Illnesses you have to fight to get: facts as forces in uncertain, emergent illnesses

Abstract:
Chronic fatigue syndrome and multiple chemical sensitivity are two clusters of illnesses that are pervaded by medical, social and political uncertainty. This article examines how facts are talked about and experienced in struggles over these emergent, contested illnesses in the US. Based principally on a large archive of internet newsgroup postings, and also on fieldwork and on published debates, it finds that (1) sufferers describe their experiences of being denied healthcare and legitimacy through bureaucratic categories of exclusion as dependent upon their lack of biological facts; (2) institutions manage these exclusions rhetorically through exploiting the open-endedness of science to deny efficacy to new facts; (3) collective patient action responds by archiving the systematic nature of these exclusions and developing counter-tactics. The result is the maintenance of these very expensive struggles for all involved.

Source: Dumit J. Illnesses you have to fight to get: facts as forces in uncertain, emergent illnesses. Soc Sci Med. 2006 Feb;62(3):577-90. Epub 2005 Aug 8. http://www.ncbi.nlm.nih.gov/pubmed/16085344

The radicalized self: the impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome

Abstract:

Chronic fatigue syndrome (CFS) is a relatively new disease that is difficult to diagnose. It is also a contested disease immersed in dispute about whether it is a physical or psychiatric reality. Sufferers often claim to experience not only the physical challenges of the disease, and these can be extensive, but also, initially, the anomie of suffering from a condition whose very reality is debated both in the medical and in the wider communities.

Theories of self in illness emphasize how people who are diagnosed as chronically ill work hard as they seek to maintain previous, or to develop supernormal, selves. Such goals are cast in a critical light by Foucault’s notion of the technologies of self in the context of circulating neo-liberal discourses. As people with CFS, lacking an uncontested medical diagnosis, search for meaningful self-identities, they resist previously available discourses to take up an alternative discourse, one that we call radicalized selves.

This paper raises questions about the constraints and liberties, power and powerlessness associated with a clear and undisputed medical diagnosis. It suggests a model of the self in chronic illness that considers not only changes in body and biography but also the availability of an uncontested diagnosis.

Source: Clarke JN, James S. The radicalized self: the impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome. Soc Sci Med. 2003 Oct;57(8):1387-95. http://www.ncbi.nlm.nih.gov/pubmed/12927469