Patients’ hopes for recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Toward a “recovery in” framework

Abstract

Objective There is no consensus on recovery from myalgic encephalomyelitis and chronic fatigue syndrome, which has spawned debates when interpreting outcome research. Within these debates, the patient voice is often neglected. This study aimed to understand how patients conceptualize recovery – regarding the definition and possibility of recovery. Method We conducted in-depth, semi-structured interviews with 10 older (above age 50) female patients with myalgic encephalomyelitis or chronic fatigue syndrome. Data were analyzed using a deductive thematic analysis. Results Our sample viewed recovery as functioning without fear of relapse, returning to previous roles and identities, and achieving a sustained absence of symptoms. Participants expressed skepticism that reaching recovery from myalgic encephalomyelitis and chronic fatigue syndrome exists but working toward significant improvement through coping is a viable goal. Although many accepted they would never reclaim full functioning, participants continued to experience uncertainty about their future with unclear prognostic goals and limited treatment options. Discussion Recovery is more than just symptom reduction. Outcome research should incorporate well-being measures like identity, meaning and quality of life, and personal empowerment to enhance recovery definitions. When communicating treatment goals, providers might convey cautious optimism for complete symptom remission, while emphasizing that living a fulfilling life through effective coping strategies is possible.

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

“…These findings align with our previous qualitative investigation with patients [16], where patients conceptualized recovery as the ability to (1) function in daily living without coping or fear of relapse, (2) returning to their identity in their many roles, and (3) be free of their most problematic symptoms. This overlap demonstrates both strength and merit for our current study.…”

“…Consistent with our patient investigation, this study suggests ME and CFS recovery should be viewed as multidimensional [16]. Recovery should be measured in terms of symptomatology, daily functioning (e.g., running errands), physical functioning (e.g., exercise), occupational functioning, and quality of life, all in comparison to patients’ premorbid functioning [5].…”

“…All participants provided informed consent. Questions were adapted from our previous qualitative investigation of recovery with patients [16]. Our questions tackled physicians’ thoughts on: the likelihood of recovery, defining recovery, measuring recovery, treatment approaches, and predictors of prognosis.…”

“…Because most individuals with ME and CFS have been sick for years, many may not believe a full recovery is possible, but still believe they can improve significantly [16]. Follow-up studies reflect these beliefs [17,18].…”

Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected

“…Patients can experience stigmatization from a variety of sources, such as from their community, health care professionals, the media, and the public, and this can be traumatic. Their illnesses, often lacking in observable or measurable symptomatology, may be regarded as character failings rather than legitimate threats to well-being [ 41 , 42 , 43 ].…”