Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis.

Observed Findings

• Participants identified three core support needs: managing illness symptoms and functional limitations, accessing practical and social care, and obtaining financial support.
• Barriers to accessing support stemmed from social, cultural, organizational, and professional norms that failed to recognize or validate ME/CFS.
• Ethnic minority participants and other disadvantaged groups reported compounded barriers to care access.
• Participants emphasized a need for health practitioners and policymakers to understand the bio-psycho-social nature of ME/CFS and the lived experiences of patients.
• Systemic changes in attitudes and service organization were seen as essential to achieving equity in ME/CFS care.

Inferred Conclusions

• Person-centred, equitable care for ME/CFS requires fundamental shifts in healthcare provider attitudes and understanding of the condition.
• Coordinated, flexible policy and organizational reform across health and social care sectors is necessary to address identified equity gaps.
• Public and professional education grounded in research and patient perspective is critical to improving support access and outcomes.
• Marginalised groups within the ME/CFS population require specific attention to remove compounded barriers to care.

Remaining Questions