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Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
Victoria Strassheim1,2, Julia L Newton1,2,3, Tracy Collins4
1CRESTA Fatigue Clinic, Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne NE4 6BE, UK.
Abstract:
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a rare disease with no known etiology. It affects 0.4% of the population, 25% of which experience the severe and very severe categories; these are defined as being wheelchair-, house-, and bed-bound. Currently, the absence of biomarkers necessitates a diagnosis by exclusion, which can create stigma around the illness. Very little research has been conducted with the partly defined severe and very severe categories of CFS/ME. This is in part because the significant health burdens experienced by these people create difficulties engaging in research and healthcare provision as it is currently delivered. This qualitative study explores the experiences of five individuals living with CFS/ME in its most severe form through semi-structured interviews. A six-phase themed analysis was performed using interview transcripts, which included identifying, analysing, and reporting patterns amongst the interviews. Inductive analysis was performed, coding the data without trying to fit it into a pre-existing framework or pre-conception, allowing the personal experiences of the five individuals to be expressed freely. Overarching themes of 'Lived Experience', 'Challenges to daily life', and 'Management of the condition' were identified. These themes highlight factors that place people at greater risk of experiencing the more severe presentation of CFS/ME. It is hoped that these insights will allow research and clinical communities to engage more effectively with the severely affected CFS/ME population.
Insights
Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) profoundly impacts daily life, requiring tailored research and clinical approaches. Understanding patient experiences is crucial for better support and management of this debilitating condition.
Area of Science:
- Medical Research
- Qualitative Health Research
- Patient Experience Studies
Background:
- Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) affects 0.4% of the population, with severe forms rendering individuals house- or bed-bound.
- Diagnosis by exclusion and lack of biomarkers contribute to stigma and limited research in severe CFS/ME.
- Engaging severely affected individuals in research and healthcare is challenging due to their significant health burdens.
Purpose of the Study:
- To explore the lived experiences of individuals with severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).
- To identify challenges faced by severely affected CFS/ME patients in their daily lives.
- To understand the management strategies employed by individuals with severe CFS/ME.
Main Methods:
- Qualitative study employing semi-structured interviews with five individuals experiencing severe CFS/ME.
- Six-phase thematic analysis of interview transcripts.
- Inductive analysis to allow personal experiences to guide the findings without pre-conceived frameworks.
Main Results:
- Identification of overarching themes: 'Lived Experience', 'Challenges to daily life', and 'Management of the condition'.
- Insights into factors contributing to the risk of severe CFS/ME presentations.
- Qualitative data highlighting the profound impact of severe CFS/ME on daily functioning and self-management.
Conclusions:
- The study provides crucial insights into the experiences of severely affected CFS/ME patients.
- Findings can inform more effective engagement strategies for research and clinical practice with this population.
- Understanding lived experiences is vital for improving care and support for individuals with severe CFS/ME.
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