A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs

Pilkington, Karen; Ridge, Damien; Igwesi-Chidobe, Chinonso Nwamaka; Chew-Graham, Carolyn A; Little, Paul; Babatunde, Opeyemi; Corp, Nadia; McDermott, Clare; Cheshire, Anna

doi:10.1016/j.socscimed.2020.113369

Cited by 20 publications

(22 citation statements)

References 81 publications

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“…However, each of the themes was represented in at least half of the primary studies, suggesting their broad relevance. The themes are largely compatible with those derived by Drachler et al (2009), Larun and Malterud (2007), and Pilkington et al (2020) in their reviews and meta-studies on people with CFS, showing that there are many commonalities in the experiences of people suffering from MUPS, irrespective of the type of complaints. However, our results suggest that the 'picture' is more complicated in several respects.…”

Section: Discussionsupporting

confidence: 69%

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What is it like to live with medically unexplained physical symptoms? A qualitative meta-summary

Polakovská

Řiháček

2021

Psychology & Health

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Medically unexplained physical symptoms (MUPS) are a frequent phenomenon. Understanding adults and adolescents' lived experience with MUPS is essential for providing adequate care, yet a rigorous synthesis of existing studies is missing. Objective: This study aimed to summarize findings from primary qualitative studies focused on adults' and adolescents' experience of living with MUPS. Design: Qualitative studies were searched in the PsycINFO, PsycARTICLES, and Medline databases and manually. A total of 23 resources met the inclusion criteria and were subjected to a qualitative meta-summary. Results: Eight themes were found across the set of primary studies, namely, the need to feel understood, struggling with isolation, 'sense of self' in strain, facing uncertainty, searching for explanations, ambivalence about diagnosis, disappointed by healthcare, and active coping. Conclusion: The eight themes represent the core struggles adults' and adolescents' with MUPS face in their lives, psychologically and socially. Although these themes appear to be universal, the analysis also revealed considerable variability of experience in terms of expectations from healthcare professionals, attitude towards formal diagnoses, ability to cope with the illness, or potential to transform the illness experience into personal growth. Addressing this diversity of needs represents a significant challenge for the healthcare system.Medically unexplained physical symptoms (MUPS) represent a highly frequent group of complaints in healthcare. The 12-month prevalence of MUPS in primary care was estimated to be as high as 49% (Haller et al., 2015), although the accuracy of this estimate remains doubtful. Not only are MUPS connected with specific challenges for practitioners, but they are also associated with specific experiences for patients, which may influence the course of the treatment. Therefore, understanding the lived experience of adults and adolescents with MUPS is an essential aspect of adequate medical care.The term MUPS has been extensively debated. While some authors distinguish particular syndromes, such as chronic fatigue syndrome (CFS), fibromyalgia (FM), psychogenic nonepileptic seizures (PNES), and irritable bowel syndrome (IBS) (Wessely

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Section: Discussionsupporting

confidence: 69%

“…They emphasized that the sense of identity in patients with CFS can be endangered when the illness legitimacy is questioned. Furthermore, in their qualitative meta-ethnography, Pilkington et al (2020) discovered how the "invisibility" of the illness undermines patients' ability to gain support.…”

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confidence: 99%

What is it like to live with medically unexplained physical symptoms? A qualitative meta-summary

Polakovská

Řiháček

2021

Psychology & Health

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“…The literature on CFS/ME documents the struggles of people to be taken seriously by health professionals and society (Pilkington et al, 2020). The lack of a diagnostic marker or test has left those with the illness open to not being believed or taken seriously (Chew-Graham et al, 2009; Raine et al, 2004).…”

Section: Discussionmentioning

confidence: 99%

Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME

et al. 2020

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Little is known about what recovery means to those with chronic fatigue syndrome/myalgic encephalomyelitis, a poorly understood, disabling chronic health condition. To explore this issue, semi-structured interviews were conducted with patients reporting improvement ( n = 9) and deterioration ( n = 10) after a guided self-help intervention, and analyzed via “constant comparison.” The meaning of recovery differed between participants—expectations for improvement and deployment of the sick role (and associated stigma) were key influences. While some saw recovery as complete freedom from symptoms, many defined it as freedom from the “sick role,” with functionality prioritized. Others redefined recovery, reluctant to return to the lifestyle that may have contributed to their illness, or rejected the concept as unhelpful. Recovery is not always about eliminating all symptoms. Rather, it is a nexus between the reality of limited opportunities for full recovery, yet a strong desire to leave the illness behind and regain a sense of “normality.”

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“…It has been reported that general fatigue occurs in the chronic phase regardless of the severity of disease in the acute phase [ 11 ], and that seems to be consistent with our patient cohort. Management of fatigue is often challenging for both physicians and patients because fatigue is difficult to quantify and diagnose objectively, possibly complicating the physician-patient relationship [ 16 ]. In addition, fatigue is caused by a wide variety of systemic diseases other than COVID-19 [ 17 ], making a differential diagnosis difficult.…”

Section: Discussionmentioning

confidence: 99%

Clinical Characteristics of Japanese Patients Who Visited a COVID-19 Aftercare Clinic for Post-Acute Sequelae of COVID-19/Long COVID

Otsuka¹,

Tokumasu²,

Nakano³

et al. 2021

Cureus

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The long-term clinical course, prognosis, and optimal management of symptoms and conditions after the acute phase of coronavirus disease 2019 remain to be elucidated. The purpose of this study was to clarify the characteristics of patients referred to a COVID-19 aftercare (CAC) clinic established at a tertiary academic hospital in Japan. MethodsThis study was a descriptive case series study. All patients who visited the CAC clinic between February 15 and September 17 in 2021 were included. Patients' background, chief complaints, and clinical courses after the onset of COVID-19 were described. ResultsA total of 87 Japanese patients (median age, 40.0 years; interquartile range [IQR], 26.5-53.0 years; 52.9% women) were referred to the CAC clinic. The median interval between the onset of COVID-19 and the visit to the clinic was 79.0 (IQR, 52.5-112.0) days. Referral sources were hospitals (36 patients), clinics (47 patients), a local healthcare center (3 patients), and other (1 patient). The most common chief complaint was general fatigue (50.4%) followed by dysosmia (28.7%), dysgeusia (26.4%), hair loss (18.4%), headache (17.2%), dyspnea (16.1%), and dyssomnia (13.1%). Respiratory symptoms were common in the early stages of the disease but were less common as the chief complaints when visiting the clinic. On the other hand, neurological, psychiatric, and extremity symptoms were predominant one month after the onset of COVID-19. ConclusionsRegardless of the severity in the acute phase, patients visiting our CAC clinic suffered from a variety of symptoms. General physicians skilled in using a comprehensive approach would be optimal to see patients with such complex symptoms.

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A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs

Cited by 20 publications

References 81 publications

What is it like to live with medically unexplained physical symptoms? A qualitative meta-summary

What is it like to live with medically unexplained physical symptoms? A qualitative meta-summary

Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME

Clinical Characteristics of Japanese Patients Who Visited a COVID-19 Aftercare Clinic for Post-Acute Sequelae of COVID-19/Long COVID

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