Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders.

Observed Findings

• Healthcare professionals frequently use stigmatizing language and 'never-words' when interacting with patients with Long COVID and ME/CFS.
• Patients consistently report feeling disbelieved, judged, gaslighted, and dismissed by medical practitioners.
• Adversarial clinical interactions appear more likely in contexts of diagnostic uncertainty, absence of biomarkers, and lack of FDA-approved therapies.
• Problematic language patterns negatively impact the clinician-patient relationship and patient emotional wellbeing.
• Specific alternative phrasings aligned with therapeutic communication principles can replace harmful language.

Inferred Conclusions

• Training healthcare professionals to recognize and avoid 'never-words' and use compassionate, non-judgmental language can improve therapeutic relationships with ME/CFS and Long COVID patients.
• Best practices from difficult clinical conversation literature can be effectively adapted to support patients with complex chronic disorders lacking clear biomarkers.
• Language choice by clinicians carries significant emotional impact and may influence patient recovery and engagement with healthcare systems.
• Systemic change in clinician communication requires awareness of these patterns and intentional adoption of evidence-based alternative language.

Remaining Questions