A review and meta-synthesis of qualitative studies on Myalgic Encephalomyelitis/chronic fatigue syndrome

Abstract

Objective To review and synthesize findings across qualitative studies on Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS). Methods Articles were systematically reviewed and analyzed within a meta-analytic framework. Analyses included a multi-perspective (e.g., individual, physician, familial) examination of ME/CFS, as well as a comparative analysis of ME/CFS versus other chronic conditions. Results Thirty-four (34) qualitative studies on ME/CFS were identified and included. Findings include three substantive thematic areas that focus on studies concerning: (1) experiences of people with ME/CFS, (2) experiences of physicians, and (3) themes that intersect both of these groups. For patients, illness development influenced identity, reductions in functioning, and coping. Physician-specific themes described lack of awareness about the illness and recommended improvement in medical education. Themes that intersected expressed issues with diagnosis which creates tensions and fuels the stigmatization of ME/CFS. Conclusions Findings indicate multilayered, context-specific experiences and ways in which both people with ME/CFS, as well as the people involved in their lives, such as family or the medical community, understand their illness. Future qualitative studies should coalesce the various facets of the ME/CFS experience, the network members of people with ME/CFS, and the sociocultural environment through which the illness is understood. Practice implications Health care professionals can gain unique insight from patient experiences, allowing for more accurate diagnoses and treatment recommendations.

“It´s incredible how much I´ve had to fight.” Negotiating medical uncertainty in clinical encounters

“…In line with our findings, people with MUPS conditions often experience being rejected, belittled, ignored, marginalized and stigmatized (Anderson et al, 2012; Bulow, 2008; Donalek, 2009; Gilje, Söderlund, & Malterud, 2008; Kornelsen et al, 2016; Robson & Lian, 2016, 2017; Rosendal et al, 2013; Schoofs et al, 2004; Thomas & Smith, 2005; Widerberg, 2005). Attribution of symptom worsening due to healthcare interactions, however, has not previously been observed, but experiences of detrimental effects of physical therapies and overexertion have (Brown, Khorana, & Jason, 2011; Jason, Benton, Torres-Harding, & Muldowney, 2009).…”

“…At a micro level, participants describe being trapped in destructive interactions (“weekly battles with the doctor”) characterized by the “poor”, “awful”, and “dreadful” behaviours (“ridicule”) they encounter. Research on doctors’ attitudes supports these experiences: doctors express suspicion, mistrust and negative stereotyping of these patients (Anderson, Jason, Hlavaty, Porter, & Cudia, 2012; Åsbring & Närvänen, 2003; Donalek, 2009; Raine, Carter, Sensky, & Black, 2004), characterize them as unmotivated and pessimistic (Guise, McVittie, & McKinlay, 2010), and sometimes label them as hypochondriacs (Schoofs, Bambini, Ronning, Bielak, & Woehl, 2004). At a meso level, participants depict being trapped in a system that cannot or will not help them (“treatment … is so poor”), a “holding pattern” against which they are “fighting an uphill battle”.…”

“…When doctors attribute MUPS conditions to mental and social causes, patients often perceive it as psychologising and trivialising their symptoms (Anderson et al, 2012; Åsbring & Närvänen, 2004; Rosendal et al, 2013; Schoofs et al, 2004). The lack of biomedical knowledge and efficient medical treatment limits doctors’ ability to help these patients, and this might lead them to distance themselves (Åsbring & Närvänen, 2003).…”

Factors facilitating patient satisfaction among women with medically unexplained long-term fatigue: A relational perspective

“…Because the condition is difficult to identify, explain and treat with the aid of medical knowledge and technology, these encounters represent a serious challenge to doctor-patient collaborations (Stone, 2014;Anderson et al, 2012;Banks & Prior, 2001).…”

Activity Pacing Self-Management in Chronic Fatigue Syndrome: A Randomized Controlled Trial

“…The most commonly experienced symptoms are fatigue, pain, and cognitive problems (Anderson, Jason, Hlavaty, Porter, & Cudia, 2012;Goudsmit, Nijs, Jason, & Wallman, 2012). People with CFS may experience restricted performance in a variety of life domains, including employment, education, personal care, home care, leisure, and social relationships, although their symptoms are not always visible to others in their environment (Anderson et al, 2012;Taylor et al, 2010).…”