scholarly journals Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery

2019 ◽  
Vol 3 (1) ◽  
pp. e000525
Author(s):  
Matthew Robert Harland ◽  
Roxanne Morin Parslow ◽  
Nina Anderson ◽  
Danielle Byrne ◽  
Esther Crawley
Keyword(s):  
Chronic Fatigue Syndrome ◽  
Leisure Activities ◽  
Complete Recovery ◽  
Chronic Fatigue ◽  
Activity Level ◽  
Fatigue Syndrome ◽  
Parents And Children ◽  
Level Of Activity ◽  
Children And Parents ◽  
Service Data

ObjectivesChronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is common in children and adolescents; however, little is known about how we should define recovery. This study aims to explore perceptions of recovery held by paediatric patients with CFS/ME and their parents.MethodsChildren with CFS/ME and their parents were recruited through a single specialist paediatric CFS/ME service. Data were collected through semistructured interviews with children and parents. The interview questions explored how participants would know if they/their child had recovered from CFS/ME. Thematic analysis was used to identify patterns within the data.ResultsTwenty-one children with CFS/ME, twenty mothers and two fathers were interviewed. Some children found it hard to define recovery as the illness had become a ‘new normal’. Others thought recovery would indicate returning to pre-morbid levels of activity or achieving the same activity level as peers (socialising, education and leisure activities). Increased flexibility in routines and the absence of payback after activities were important. The interviews highlighted the concept of recovery as highly individual with wide variation in symptoms experienced, type and level of activity that would signify recovery. Parents describe how changes in mood and motivation would signify their child’s recovery, but children did not reflect on this.ConclusionSome parents and children struggle to define what would constitute complete recovery. However, signs of recovery were more easily identifiable. Definitions of recovery went far beyond symptom reduction and were focused towards rebuilding lives.

scholarly journals Adolescent’s descriptions of fatigue, fluctuation and payback in chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): interviews with adolescents and parents

2018 ◽  
Vol 2 (1) ◽  
pp. e000281 ◽  
Author(s):  
Roxanne M Parslow ◽  
Nina Anderson ◽  
Danielle Byrne ◽  
Alison Shaw ◽  
Kirstie L Haywood ◽  
...  
Keyword(s):  
Chronic Fatigue Syndrome ◽  
Qualitative Interviews ◽  
Leisure Activities ◽  
Chronic Fatigue ◽  
Daily Activities ◽  
Daily Lives ◽  
Fatigue Syndrome ◽  
Constant Versus ◽  
The Individual ◽  
The Impact

ObjectiveAs part of a larger qualitative study to explore outcomes important in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) and what improvements in fatigue and disability are key, interviews were undertaken with adolescents and their parents. This paper focuses on their descriptions of fatigue, fluctuation of symptoms and payback.Design and settingSemistructured qualitative interviews were undertaken between December 2014 and February 2015. Adolescents and parents were interviewed separately. Participants were recruited from a single specialist paediatric chronic fatigue service. Interviews were audio recorded, transcribed verbatim and analysed using thematic analysis.ParticipantsWe interviewed 21 adolescents and their parents (20 mothers and 2 fathers). The adolescents were aged between 12 and 17 years of age (mean age 14.4 years), mild to moderately affected by CFS/ME (not housebound) and the majority were female (16/21).ResultsAll adolescents with CFS/ME reported fatigue, a natural fluctuation of the condition, with good days and bad days as well as an increase in symptoms after activity (payback). However, adolescent’s descriptions of fatigue, symptoms and the associated impact on their daily lives differed. The variations included: fatigue versus a collection of symptoms, constant versus variable symptoms and variable symptom severity. There were differences between participants in the amount of activity taken to cause payback. The impact of fatigue and symptoms on function ranged from: limiting the duration and amount of leisure activities, struggling with daily activities (eg, self-care) to no activity (sedentary).ConclusionsFatigue, fluctuation of the condition and payback after activity are described by all adolescents with CFS/ME in this study. However, the individual experience in terms of how they describe it and the degree and impact varies.

Chronic fatigue syndrome: Assessing symptoms and activity level

1999 ◽  
Vol 55 (4) ◽  
pp. 411-424 ◽  
Author(s):  
Leonard A. Jason ◽  
Caroline P. King ◽  
Erin L. Frankenberry ◽  
Karen M. Jordan ◽  
Warren W. Tryon ◽  
...  
Keyword(s):  
Chronic Fatigue Syndrome ◽  
Chronic Fatigue ◽  
Activity Level ◽  
Fatigue Syndrome

scholarly journals Acute Effects of Thirty Minutes of Light-Intensity, Intermittent Exercise on Patients With Chronic Fatigue Syndrome

1999 ◽  
Vol 79 (8) ◽  
pp. 749-756 ◽  
Author(s):  
Lisa L Clapp ◽  
Mark T Richardson ◽  
Joe F Smith ◽  
Minqi Wang ◽  
Anthony J Clapp ◽  
...  
Keyword(s):  
Health Status ◽  
Chronic Fatigue Syndrome ◽  
Light Intensity ◽  
General Health ◽  
Intermittent Exercise ◽  
Chronic Fatigue ◽  
Activity Level ◽  
General Health Status ◽  
Fatigue Syndrome ◽  
Degree Of Disability

Abstract Background and Purpose. Currently, there is no consensus on exercise prescription for patients with chronic fatigue syndrome (CFS). This investigation examined whether light-intensity, intermittent physical activity exacerbated symptoms in patients with CFS immediately following exercise to 7 days following exercise. Subjects. Subjects were 9 women (mean age=44.2 years, SD=8.4, range=29-56; mean weight=74.2 kg, SD=18.8, range=56.36-110.91; and mean height=1.63 m, SD=0.8, range=1.55-1.78) and 1 man (age=48 years, weight=97.1 kg, and height=1.98 m) who met the Centers for Disease Control and Prevention's criteria for CFS. Methods. Subjects performed 10 discontinuous 3-minute exercise bouts (separated by 3 minutes of recovery) at a self-selected, comfortable walking pace on a treadmill. Oxygen consumption, minute ventilation, respiratory exchange ratio, and heart rate were measured every minute during the exercise session. To assess degree of disability, general health status, activity level, symptoms, and mood, subjects completed various questionnaires before and after exercise. Results. Results indicated that degree of disability, general health status, symptoms, and mood did not change immediately and up to 7 days following exercise. Conclusion and Discussion. Thirty minutes of intermittent walking did not exacerbate symptoms in subjects with CFS. The physiological data did not show any abnormal response to exercise. Although this study did not determine whether 30 minutes of continuous versus intermittent exercise would exacerbate symptoms, all 10 subjects felt that they could not exercise continuously for 30 minutes without experiencing symptom exacerbation. Despite this limitation, the results indicate that some individuals with CFS may be able to use low-level, intermittent exercise without exacerbating their symptoms.

scholarly journals Comparison of chronic fatigue syndrome/myalgic encephalopathy with other disorders: an observational study

2012 ◽  
Vol 3 (5) ◽  
pp. 1-7 ◽  
Author(s):  
Ak Knudsen ◽  
Lv Lervik ◽  
Sb Harvey ◽  
Cms Løvvik ◽  
An Omenås ◽  
...  
Keyword(s):  
Chronic Fatigue Syndrome ◽  
Observational Study ◽  
Online Discussion ◽  
Chronic Fatigue ◽  
Discussion Forums ◽  
Online Forums ◽  
Online Activity ◽  
Online Discussion Forums ◽  
Fatigue Syndrome ◽  
Level Of Activity

Summary Objectives To examine the level of activity in online discussion forums for chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) compared to other disorders. We hypothesized the level of activity to be higher in CFS/ME online discussion forums. Design Observational study Setting Norway, which has more than 80% household coverage in internet access, September 2009 Participants Twelve Norwegian disorder-related online discussion forums Main outcome measures Number of registered users and number of posted messages on each discussion forum Results Two forums were targeted towards individuals with CFS/ME. These forums had the highest number of registered users per estimated 1,000 cases in the population (50.5 per 1,000 and 29.7 per 1,000), followed by a site for drug dependency (5.4 per 1,000). Counting the number of posted messages per 1,000 cases gave similar indications of high online activity in the CFS/ME discussion forums. Conclusions CFS/ME online forums had more than ten times the relative activity of any other disorder or condition related forum. This high level of activity may have multiple explanations. Individuals suffering from a stigmatized condition of unknown aetiology may use the internet to look for explanations of symptoms or to seek out alternative treatments. Internet forum activity may also be reinforced by the creation of in-group identity and pre-morbid personality traits. More knowledge on the type and quality of information provided in online forums is urgently needed.

scholarly journals Activity measurement in pediatric chronic fatigue syndrome

2020 ◽  
pp. 174239532094961
Author(s):  
Bernardo Loiacono ◽  
Madison Sunnquist ◽  
Laura Nicholson ◽  
Leonard A Jason
Keyword(s):  
Chronic Fatigue Syndrome ◽  
Activity Patterns ◽  
Chronic Fatigue ◽  
Activity Level ◽  
Activity Measurement ◽  
Activity Levels ◽  
Healthy Children ◽  
Activity Data ◽  
Fatigue Syndrome ◽  
Delayed Initiation

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.

Chronic fatigue syndrome impairs circadian rhythm of activity level

2004 ◽  
Vol 82 (5) ◽  
pp. 849-853 ◽  
Author(s):  
W TRYON ◽  
L JASON ◽  
E FRANKENBERRY ◽  
S TORRESHARDING
Keyword(s):  
Circadian Rhythm ◽  
Chronic Fatigue Syndrome ◽  
Chronic Fatigue ◽  
Activity Level ◽  
Fatigue Syndrome

scholarly journals Obesity in adolescents with chronic fatigue syndrome: an observational study

2016 ◽  
Vol 102 (1) ◽  
pp. 35-39 ◽  
Author(s):  
T Norris ◽  
K Hawton ◽  
J Hamilton-Shield ◽  
E Crawley
Keyword(s):  
Chronic Fatigue Syndrome ◽  
Longitudinal Research ◽  
Task Force ◽  
Chronic Fatigue ◽  
Specialist Service ◽  
Cross Sectional ◽  
Fatigue Syndrome ◽  
Parents And Children ◽  
Specialist Services ◽  
Prevalence Of Obesity

ObjectiveIdentify the prevalence of obesity in patients with chronic fatigue syndrome (CFS) compared with healthy adolescents, and those identified with CFS in a population cohort.DesignCross-sectional analysis of multiple imputed data.SettingData from UK paediatric CFS/myalgic encephalomyelitis (CFS/ME) services compared with data collected at two time points in the Avon Longitudinal Study of Parents and Children (ALSPAC).Patients1685 adolescents who attended a CFS/ME specialist service between 2004 and 2014 and 13 978 adolescents aged approximately 13 years and 16 years participating in the ALSPAC study.Main outcome measuresBody mass index (BMI) (kg/m2), sex-specific and age-specific BMI Z-scores (relative to the International Obesity Task Force cut-offs) and prevalence of obesity (%).ResultsAdolescents who had attended specialist CFS/ME services had a higher prevalence of obesity (age 13 years: 9.28%; age 16 years: 16.43%) compared with both adolescents classified as CFS/ME in ALSPAC (age 13 years: 3.72%; age 16 years: 5.46%) and those non-CFS in ALSPAC (age 13 years: 4.18%; age 16 years: 4.46%). The increased odds of obesity in those who attended specialist services (relative to non-CFS in ALSPAC) was apparent at both 13 years (OR: 2.31 (1.54 to 3.48)) and 16 years, with a greater likelihood observed at 16 years (OR: 4.07 (2.04 to 8.11)).ConclusionsWe observed an increased prevalence of obesity in adolescents who were affected severely enough to be referred to a specialist CFS/ME service. Further longitudinal research is required in order to identify the temporal relationship between the two conditions.

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