Full recovery is possible: how women recover from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) outside formal clinical settings
Harper, Julie
Aims
Latest UK guidance for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) states there is no cure (NICE, 2021), leaving those with the illness without hope of recovery. However, many have recovered outside formal medical settings, although little is known about the methods used or how they define recovery. The aims of this research are to understand the factors which individuals who identify as having recovered from ME/CFS believe led to their recovery, and what recovery means to them.
Method
This study explored the experiences of eight women who recovered using psychologically mediated approaches. Semi-structured interviews were analysed using reflexive thematic analysis.
Results
Participants defined recovery as a return to good health, but with a better life, and no fear of relapse. Two foundational elements supported recovery: cultivation of a recovery mindset and development of an explanatory narrative about the causes and perpetuations of the illness. Building on these foundations, active recovery methods involved responding to symptoms differently and addressing root causes, such as emotional trauma, stress and identity factors.
Discussion
These findings align with cognitive and behavioural theories of symptom maintenance in ME/CFS, but extend existing models by highlighting the importance of foundational conditions, particularly belief in recovery and an explanatory model, and resolution of predisposing and perpetuating psychological patterns that appear to enable meaningful change.
Conclusion
This study contributes much-needed evidence for full recovery from ME/CFS and provides a basis for future investigation into active psychological recovery methods. It also offers hope for those living with the illness that recovery is both possible and achievable.
Web | DOI | Journal of Psychosomatic Research | Abstract only
Edited to "Abstract only"
Harper, Julie
Aims
Latest UK guidance for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) states there is no cure (NICE, 2021), leaving those with the illness without hope of recovery. However, many have recovered outside formal medical settings, although little is known about the methods used or how they define recovery. The aims of this research are to understand the factors which individuals who identify as having recovered from ME/CFS believe led to their recovery, and what recovery means to them.
Method
This study explored the experiences of eight women who recovered using psychologically mediated approaches. Semi-structured interviews were analysed using reflexive thematic analysis.
Results
Participants defined recovery as a return to good health, but with a better life, and no fear of relapse. Two foundational elements supported recovery: cultivation of a recovery mindset and development of an explanatory narrative about the causes and perpetuations of the illness. Building on these foundations, active recovery methods involved responding to symptoms differently and addressing root causes, such as emotional trauma, stress and identity factors.
Discussion
These findings align with cognitive and behavioural theories of symptom maintenance in ME/CFS, but extend existing models by highlighting the importance of foundational conditions, particularly belief in recovery and an explanatory model, and resolution of predisposing and perpetuating psychological patterns that appear to enable meaningful change.
Conclusion
This study contributes much-needed evidence for full recovery from ME/CFS and provides a basis for future investigation into active psychological recovery methods. It also offers hope for those living with the illness that recovery is both possible and achievable.
Web | DOI | Journal of Psychosomatic Research | Abstract only
Edited to "Abstract only"
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