Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective

Abstract

Purpose: To inform an operationalised definition of recovery from myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) for research and practice. Without a consensus on defining and measuring recovery, there will continue to be controversy amongst researchers, clinicians, and patients when interpreting treatment outcomes.

Method: This study explores physicians’ views on recovery from ME and CFS. We conducted semi-structured interviews with 10 physician participants who are experts in the ME and CFS field. Our deductive thematic analysis, using a realist perspective, provided a framework for differentiating recovery and significant improvement.

Results: Physicians conceptualised recovery as complete symptom remission and a return to premorbid functioning (adjusted for with age), whereas they viewed significant improvement as a substantial reduction in symptoms with considerable functional gains, where patients may operate in daily life but still must cope or be treated.

Conclusions: Our findings provide recommendations and approaches for measuring: daily functioning, symptomatology, quality of life, and physical functioning.

Implications for rehabilitation

• Physicians viewed recovery as complete symptom remission and a return to premorbid functioning (adjusted for with age).

• Recovery from myalgic encephalomyelitis and chronic fatigue syndrome should be viewed as multidimensional, considering patients’ daily life, psychosocial functioning, and overall physical functioning.

• These findings can improve practitioner-client interactions, as they provide recommendations for measuring recovery in research and practice.

Keywords:

• Chronic illness
• assessment
• prognosis
• physical functioning
• psychosocial functioning
• qualitative

Acknowledgements

Thank you to all of the physicians who dedicated their time to this study. We are very grateful for their continued service to the ME and CFS patient community.

Disclosure statement

The authors report no declarations of interest.

Additional information

Funding

This study was funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development [grant number HD072208].