Using Communities of Practice Theory to Understand the Crisis of Identity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).

Observed Findings

• Participants distinguished between 'enabling communities' (supportive, validating) and 'disabling communities' (invalidating, stigmatizing) in shaping their lived experience
• Active participation in supportive communities correlated with participants developing identities not centrally defined by loss or stigma
• Virtual communities provided spaces where participants could explore purpose and meaning alongside their illness
• Participants reported that learning to exist 'alongside' ME/CFS rather than being defined by it contributed to sense of empowerment
• Facebook communities functioned as platforms for positive identity change and mutual support

Inferred Conclusions

• Communities of Practice framework effectively explains how social participation shapes identity formation in ME/CFS populations
• Supporting community engagement may be a valuable intervention for addressing the psychological and identity-related impacts of ME/CFS
• Virtual communities offer particular value as accessible spaces for identity work, especially for patients with mobility or energy limitations
• Healthcare providers and families should consider their role in either enabling or disabling identity development in ME/CFS patients

Remaining Questions