Approaching recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Challenges to consider in research and practice

Devendorf, Andrew; Jackson, Carly; Sunnquist, Madison; Jason, Leonard A.

doi:10.1177/1359105317742195

Cited by 9 publications

(13 citation statements)

References 42 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The complexity of the illness, together with its fluctuating symptoms, and their tendency to vary over the course of an individual’s lifespan, make it difficult to judge whether someone is in recovery or is simply experiencing a temporary, random improvement (Devendorf et al, 2019 ). Acquiring longitudinal data on those recovering from ME/CFS represents a further challenge.…”

Section: Introductionmentioning

confidence: 99%

“…Persons who recover, particularly at an early age, may stop seeking medical help, without physicians knowing whether the condition of such patients has actually improved. The fact that a patient has recovered will not necessarily be registered and the physician will not have the opportunity to include the patient in medical research (Devendorf et al, 2019 ).…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

The fragile process of Homecoming - Young women in recovery from severe ME/CFS

Krabbe

Groven

Bjorbækmo

et al. 2022

International Journal of Qualitative Studies on Health and Well

View full text Add to dashboard Cite

Purpose To explore the recovery narratives of 13 young women who had fallen ill with severe Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), during childhood and adolescence, with the focus on what they had to say about their past experiences from the perspective of the present. Method A qualitative narrative approach, informed by a phenomenological theoretical perspective, was adopted to explore what the women found significant and meaningful in their recovery process. Data analysis of in-depth narrative interviews was performed which are presented to readers through the stories of two particular participants. Results The first story describes how one participant made a recovery by testing her body’s tolerance and working to create a more confident self. The second story describes a complex exploration of possibilities for action in recovery, along with a struggle to make sense of setbacks and hold on to what has been gained. Conclusion Recovering from ME/CFS emerges as an inter-personal, contextual, fragile and nonlinear process of homecoming, based on gradually rising bodily based self-knowledge. Illness slowly fades away into the background, and there is the prospect of a healthier tomorrow.

show abstract

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

The fragile process of Homecoming - Young women in recovery from severe ME/CFS

Krabbe

Groven

Bjorbækmo

et al. 2022

International Journal of Qualitative Studies on Health and Well

View full text Add to dashboard Cite

show abstract

“…Recovery from ME and CFS is a subjective topic with many challenges. 3 There is no biomarker test to determine ME and CFS. Instead, case definitions are used to determine a diagnosis, but there is no consensus on which case definition to use.…”

mentioning

confidence: 99%

“…Children and adolescents are more likely to improve or recover, 4 and lifespan differences influence recovery goals (school vs. work status), meaning of symptoms, and access to resources. 3 These factors contribute to the varying definitions and rates of recovery across studies. In Adamowicz et al.’s 2 review, recovery rates ranged from 0 to 66% with most studies using limited assessments and “less than full restoration of health.”…”

mentioning

confidence: 99%

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

2018

Self Cite

View full text Add to dashboard Cite

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.

show abstract

“…4 Evidence of a substantial reduction in activity level (when compared to premorbid functioning) is required by many ME and CFS case definitions, 2,5,6 and individuals with ME and CFS have emphasized that a return to premorbid activity levels should be required when researchers operationalize “recovery” from the illness. 7 Given the importance of activity level in diagnosing, treating, and defining recovery from ME and CFS, the current study sought to examine and compare objective and subjective measures of physical activity.…”

Section: Activity Measurement In Pediatric Chronic Fatigue Syndromementioning

confidence: 99%

Activity measurement in pediatric chronic fatigue syndrome

et al. 2020

Self Cite

View full text Add to dashboard Cite

Objectives Individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) experience debilitating symptoms, including post-exertional malaise, an intensification of symptoms after physical or cognitive exertion. Previous studies found differences in the activity levels and patterns of activity among individuals with ME and CFS, compared to healthy controls; however, limited research exists on the activity levels of pediatric patients. The objective of this study was to examine differences in activity between healthy children and youth with ME and CFS. Methods The present study examines the objective (i.e., ActiGraphy) and self-reported levels of activity among children (ages 5 to 17) enrolled in a community-based study of pediatric CFS. Results Children with ME and CFS evidenced lower activity levels than healthy control children. Moreover, participants with ME and CFS evidenced increased nighttime activity and delayed initiation of daytime activity. Participants’ self-reported activity data significantly correlated with their ActiGraph data, suggesting that children with ME and CFS are able to accurately describe their activity level. Discussion This study highlights differences in activity level and diurnal/nocturnal activity patterns between healthy children and those with ME and CFS. These differences should be considered in identifying appropriate supports and accommodations for children with ME and CFS.

show abstract

Approaching recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Challenges to consider in research and practice

Cited by 9 publications

References 42 publications

The fragile process of Homecoming - Young women in recovery from severe ME/CFS

The fragile process of Homecoming - Young women in recovery from severe ME/CFS

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

Activity measurement in pediatric chronic fatigue syndrome

Contact Info

Product

Resources

About