Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective.
Devendorf, Andrew R, Jackson, Carly T, Sunnquist, Madison et al. · Disability and rehabilitation · 2019 · DOI
Quick Summary
This study asked ME/CFS doctors what they think it means to truly recover from these illnesses. The researchers found that doctors see recovery as getting back to how a person functioned before they got sick, with all symptoms gone. They also identified a separate category called 'significant improvement,' where patients feel much better and can do more, but still experience some symptoms or need treatment.
Why It Matters
Without consensus on what 'recovery' means, researchers and clinicians cannot accurately assess whether treatments work, and patients may have unrealistic expectations about outcomes. This framework helps clarify measurement standards and improves communication between doctors and patients about realistic treatment goals and progress.
Observed Findings
Physicians conceptualized recovery as complete symptom remission with return to premorbid functioning (adjusted for age)
Physicians distinguished recovery from significant improvement, where patients achieve substantial symptom reduction and functional gains but continue to experience symptoms requiring ongoing management or treatment
Physicians identified four key measurement domains for assessing recovery: daily functioning, symptomatology, quality of life, and physical functioning
The study emphasizes that recovery should be viewed as multidimensional, encompassing patients' daily life, psychosocial functioning, and overall physical functioning
Inferred Conclusions
A clear operational definition of recovery distinct from significant improvement is necessary to reduce controversy in interpreting treatment outcomes across research and practice settings
Recovery assessment in ME/CFS should incorporate multidimensional measurement approaches rather than single-outcome measures
Improved measurement frameworks can enhance physician-patient communication and align expectations about realistic treatment goals
Remaining Questions
Do patients with ME/CFS agree with these physician-derived definitions of recovery and significant improvement, or do they conceptualize recovery differently?
How frequently do patients achieve complete recovery versus significant improvement, and what factors predict each outcome?
What This Study Does Not Prove
This study does not identify which treatments actually produce recovery or significant improvement—it only defines what these terms mean. It reflects physician perspectives only and does not validate whether patients themselves would accept these definitions. The study provides no evidence about how often true recovery occurs or what factors predict recovery.