Bodies in lockdown: Young women's narratives of falling severely ill with ME/CFS during childhood and adolescence.
Krabbe, Silje Helen, Mengshoel, Anne Marit, Schrøder Bjorbækmo, Wenche et al. · Health care for women international · 2023 · DOI
Quick Summary
This study listened to the stories of 13 young women who became severely ill with ME/CFS during their childhood or teenage years. The researchers found that these women experienced a gradual loss of their normal, active lives, felt increasingly isolated and abandoned by others, and struggled with uncertainty about their future. The study highlights how challenging and life-altering this illness can be during crucial developmental years.
Why It Matters
This qualitative study provides critical insight into the lived experiences of young people with severe ME/CFS, highlighting the profound psychosocial impacts beyond physical symptoms. Understanding these experiences can help healthcare providers, families, and educators better support adolescents with ME/CFS and recognize the importance of addressing social isolation and abandonment in clinical care.
Observed Findings
Young women described a meaningful, active life before illness onset that was lost to severe ME/CFS
Participants experienced a gradual, unpredictable disease progression that created a sense of 'unhomeliness' and instability
Women reported feeling abandoned by healthcare systems, family members, and social circles
Uncertainty about the illness trajectory and prognosis was a consistent experience
Participants received advice that they perceived as harmful or unhelpful during their illness journey
Inferred Conclusions
Severe ME/CFS during development creates profound disruption to identity, social participation, and future planning
The social and emotional impacts of illness may be as significant as physical symptoms in determining quality of life
Current healthcare and social responses often fail to adequately support severely ill adolescents with ME/CFS
The experience of this illness is characterized by cumulative losses across multiple life domains rather than static disability
Remaining Questions
How do experiences differ between those with varying ME/CFS severity levels, or between those who experience remission versus progressive illness?
What This Study Does Not Prove
This study does not establish the biological mechanisms of ME/CFS, nor does it prove that psychological factors cause the illness. As a qualitative narrative study with a small sample, it describes experiences rather than measuring prevalence or testing interventions. The findings reflect these particular women's retrospective accounts and may not generalize to all ME/CFS patients or to those with milder illness.
Tags
Symptom:Fatigue
Phenotype:SeverePediatric
Method Flag:PEM Not DefinedWeak Case DefinitionNo ControlsSmall SampleExploratory Only
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →