Category: Pediatric ME/CFS

Chronic fatigue syndrome after infectious mononucleosis in adolescents

Abstract:

OBJECTIVE: The goal was to characterize prospectively the course and outcome of chronic fatigue syndrome in adolescents during a 2-year period after infectious mononucleosis.

METHODS: A total of 301 adolescents (12-18 years of age) with infectious mononucleosis were identified and screened for nonrecovery 6 months after infectious mononucleosis by using a telephone screening interview. Nonrecovered adolescents underwent a medical evaluation, with follow-up screening 12 and 24 months after infectious mononucleosis. After blind review, final diagnoses of chronic fatigue syndrome at 6, 12, and 24 months were made by using established pediatric criteria.

RESULTS: Six, 12, and 24 months after infectious mononucleosis, 13%, 7%, and 4% of adolescents, respectively, met the criteria for chronic fatigue syndrome. Most individuals recovered with time; only 2 adolescents with chronic fatigue syndrome at 24 months seemed to have recovered or had an explanation for chronic fatigue at 12 months but then were reclassified as having chronic fatigue syndrome at 24 months. All 13 adolescents with chronic fatigue syndrome 24 months after infectious mononucleosis were female and, on average, they reported greater fatigue severity at 12 months. Reported use of steroid therapy during the acute phase of infectious mononucleosis did not increase the risk of developing chronic fatigue syndrome.

CONCLUSIONS: Infectious mononucleosis may be a risk factor for chronic fatigue syndrome in adolescents. Female gender and greater fatigue severity, but not reported steroid use during the acute illness, were associated with the development of chronic fatigue syndrome in adolescents. Additional research is needed to determine other predictors of persistent fatigue after infectious mononucleosis.

 

Source: Katz BZ, Shiraishi Y, Mears CJ, Binns HJ, Taylor R. Chronic fatigue syndrome after infectious mononucleosis in adolescents. Pediatrics. 2009 Jul;124(1):189-93. doi: 10.1542/peds.2008-1879. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2756827/ (Full article)

 

Severe versus Moderate criteria for the new pediatric case definition for ME/CFS

Abstract:

The new diagnostic criteria for pediatric ME/CFS are structurally based on the Canadian Clinical Adult case definition, and have more required specific symptoms than the (Fukuda et al. Ann Intern Med 121:953-959, 1994) adult case definition.

Physicians specializing in pediatric ME/CFS referred thirty-three pediatric patients with ME/CFS and 21 youth without the illness. Those who met ME/CFS criteria were separated into Severe and Moderate categories. Significant differences were found for symptoms within each of the six major categories: fatigue, post-exertional malaise, sleep, pain, neurocognitive difficulties, and autonomic/neuroendocrine/immune manifestations.

In general, the results showed participants who met the Severe ME/CFS criteria reported the highest scores, the Moderate ME/CFS group show scores that were a little lower, and the control group evidenced the lowest scores. Findings indicate that the Pediatric Case Definition for ME/CFS can distinguish between those with this illness and controls, and between those with Severe versus Moderate manifestations of the illness.

 

Source: Jason L, Porter N, Shelleby E, Till L, Bell DS, Lapp CW, Rowe K, De Meirleir K. Severe versus Moderate criteria for the new pediatric case definition for ME/CFS. Child Psychiatry Hum Dev. 2009 Dec;40(4):609-20. doi: 10.1007/s10578-009-0147-8. Epub 2009 Jun 10.https://www.ncbi.nlm.nih.gov/pubmed/19513826

 

Promising outcomes of an adolescent chronic fatigue syndrome inpatient programme

Abstract:

INTRODUCTION: Chronic fatigue syndrome (CFS) is a condition of prolonged and disabling fatigue, which is accompanied by characteristic constitutional and neuropsychiatric symptoms. In children and adolescents, this condition occurring at a developmentally vulnerable time adds to the disability affecting self-concept, autonomy, body image, socialisation, sexuality and academic problems. This case series looks at the effects of a graded exercise programme on physical outcomes, fatigue and mental state in an adolescent population.

METHODS: Data sets from 16 adolescents who completed combined exercise training as part of the 4-week inpatient intensive CFS programme at the Austin Hospital, Melbourne were analysed. All patients completed an exercise assessment and three questionnaires before beginning any training. A paediatrician (LL) confirmed the diagnosis according to the Fukuda criteria in all patients. Exercise was carefully supervised and prescribed daily by an exercise physiologist (BG) according to each individual’s ability and response with the basic aim of increasing exercise tolerance and improving muscle strength and endurance.

RESULTS: There was an 18% improvement in volitional time to fatigue (P= 0.02) and 17% improvement in peak oxygen uptake (VO(2peak)) (P= 0.01). Upper body strength and function improved with a remarkable 70% increase in the number of push-ups. Fatigue severity was reported to improve by 13% (P= 0.01) and depression index improved significantly by 42% (P= 0.02).

CONCLUSIONS: The significance of these improvements cannot be underestimated as an improvement in physical capacity through increased time to fatigue and less severe fatigue allows adolescents to resume school, social and family activities.

Source: Gordon B, Lubitz L. Promising outcomes of an adolescent chronic fatigue syndrome inpatient programme. J Paediatr Child Health. 2009 May;45(5):286-90. doi: 10.1111/j.1440-1754.2009.01493.x. https://www.ncbi.nlm.nih.gov/pubmed/19493121

Anxiety in children with CFS/ME

Abstract:

Anxiety symptoms are commonly described in children with chronic fatigue syndrome or myalgic encephalopathy (CFS/ME) but to date there has been little information on the type of anxiety children experience or the relationship between anxiety and school attendance, disability or fatigue.

The aim of this study was to first describe the prevalence and type of anxiety symptoms in children with CFS/ME compared with a normal European population, and secondly to investigate the association of anxiety symptoms with age, gender, school attendance, fatigue, and physical function in paediatric CFS/ME.

Data were prospectively collected on children and young people with CFS/ME referred to a large specialist CFS/ME service. One hundred and sixty-four children with CFS/ME had complete data for the Spence Children’s Anxiety Scale. Teenage girls had the highest rates of total anxiety symptoms with 38% (95% CI 27-49) over the cut off (top 10% of normal European population) and significantly higher rates of symptoms in each subscale.

Younger girls were more likely to score over the cut off in separation anxiety (37%, 19-40) and social phobia (39%, 25-47). There was no evidence of association between total anxiety symptoms and: time at school, time to assessment, pain or age. Associations with fatigue and physical function were attenuated when adjusted for other variables. Although anxiety symptoms are high in CFS/ME, particularly in teenage girls, it does not appear to be associated with school attendance or other measures of disability. Separation anxiety and social phobia were the most clearly elevated in paediatric CFS/ME.

 

Source: Crawley E, Hunt L, Stallard P. Anxiety in children with CFS/ME. Eur Child Adolesc Psychiatry. 2009 Nov;18(11):683-9. doi: 10.1007/s00787-009-0029-4. Epub 2009 May 19. https://www.ncbi.nlm.nih.gov/pubmed/19452195

 

Cognitive behavioural therapy and psycho-education for chronic fatigue syndrome in young people: reflections from the families’ perspective

Abstract:

OBJECTIVES: Recent trials have produced optimistic results for family-focussed cognitive behavioural therapy (CBT) for chronic fatigue syndrome (CFS) in young people. This study sought to examine the under-researched question of the views and experiences of patients and families who take part.

DESIGN: Semi-structured interviews and qualitative analysis were chosen in order to address clients’ perspectives in depth.

METHODS: Sixteen young people and sixteen parents who participated in a trial of CBT versus psycho-education (PE) for CFS were interviewed. Key themes were discerned using inductive thematic analysis.

RESULTS: Most families had low expectations of a cure but hope for improvement. Generally speaking, participants found both CBT and PE acceptable and helpful. Behavioural aspects of CBT (e.g. goal-setting, graded activity) were found helpful. The opportunity to gain support, recognition and validation was important. Cognitive elements of therapy were sometimes deemed inappropriate and some felt emotional aspects of CFS were not adequately addressed. Participants were ambivalent towards the extent of family involvement. Negative experiences related to the therapy setting and feeling inappropriately labeled. Most participants felt therapy was a stepping-stone towards normal life, although many felt recovery was incomplete. Very few differences were found between themes from CBT and PE participants. A notable exception was that every young person who experienced CBT described therapy as helpful, whereas the participants who strongly opposed the therapy approach had all experienced PE.

CONCLUSIONS: The detailed insights regarding families’ therapy experiences suggest areas of improvement for service delivery and topics for further investigation.

 

Source: Dennison L, Stanbrook R, Moss-Morris R, Yardley L, Chalder T. Cognitive behavioural therapy and psycho-education for chronic fatigue syndrome in young people: reflections from the families’ perspective. Br J Health Psychol. 2010 Feb;15(Pt 1):167-83. doi: 10.1348/135910709X440034. Epub 2009 May 6. https://www.ncbi.nlm.nih.gov/pubmed/19422732

 

Memory and attention problems in children with chronic fatigue syndrome or myalgic encephalopathy

Abstract:

OBJECTIVE: To understand more about the problems children with chronic fatigue syndrome (CFS) or myalgic encephalopathy (ME) experience with memory and attention, and to test the feasibility of quantitative measurement of both memory and attention.

DESIGN: Four-item semistructured questionnaire and neuropsychological test battery with 10 psychometric subtests.

SETTING: Family home of the child taking part.

PATIENTS: 20 children with a diagnosis of CFS/ME experiencing memory and/or concentration problems were recruited between April and October 2007 from a regional CFS/ME clinical service (female 13; average age 13.5 years; range 8-16).

METHODS: Each child, parent and teacher was asked to describe the child’s memory and attention problems. Responses were subject to thematic analysis by two independent researchers. In addition, each child completed a battery of 10 tests to measure: processing speed; attention; immediate and delayed memory; working memory; executive function. Raw scores were converted into age-scaled scores and the children’s psychometric scores on the 10 tests taken were compared with normative data using t tests.

RESULTS: Children with CFS/ME, their parents and teachers described problems with focussed attention, sustained attention, recall and stress. Scores for sustained attention (mean 8.1, 95% CI 6.3 to 9.9), switching attention (7.5, 5.5 to 9.4), divided attention (6.9, 5.5 to 8.2), auditory learning (8.2, 6.8 to 9.6) and immediate recall (8.7, 7.3 to 10.0) appeared lower than the normative mean of 10.

CONCLUSIONS: Children with CFS/ME appear to experience problems with attention, which may have adverse implications for verbal memory. These cognitive problems may explain some of the educational difficulties associated with CFS.

 

Source: Haig-Ferguson A, Tucker P, Eaton N, Hunt L, Crawley E. Memory and attention problems in children with chronic fatigue syndrome or myalgic encephalopathy. Arch Dis Child. 2009 Oct;94(10):757-62. doi: 10.1136/adc.2008.143032. Epub 2008 Nov 11. https://www.ncbi.nlm.nih.gov/pubmed/19001478

 

Association between school absence and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy

Abstract:

OBJECTIVE: To investigate factors associated with school attendance and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME).

DESIGN: Cross-sectional study.

SETTING: Regional specialist CFS/ME service.

PATIENTS: Children and young people aged under 18 years.

OUTCOME MEASURES: Self-reported school attendance and physical function measured using the physical function subscale of the Short Form 36.

METHODS: Linear and logistic regression analysis of data from self-completed assessment forms on children attending a regional specialist service between 2004 and 2007. Analyses were done in two groups of children: with a completed Spence Children’s Anxiety Scale (SCAS) and with a completed Hospital Anxiety and Depression Scale (HADS).

RESULTS: Of 211 children with CFS/ME, 62% attended 40% of school or less. In children with completed SCAS, those with better physical function were more likely to attend school (adjusted odds ratio (OR) 1.70; 95% CI 1.36 to 2.13). This was also true for those with completed HADS (adjusted OR 2.05; 95% CI 1.4 to 3.01). Increasing fatigue and pain and low mood were associated with worse physical function. There was no evidence that anxiety, gender, age at assessment, family history of CFS/ME or time from onset of symptoms to assessment in clinic were associated with school attendance or physical function.

IMPLICATIONS: Paediatricians should recognise that reduced school attendance is associated with reduced physical function rather than anxiety. Improving school attendance in children with CFS/ME should focus on evidence-based interventions to improve physical function, particularly concentrating on interventions that are likely to reduce pain and fatigue.

 

Source: Crawley E, Sterne JA. Association between school absence and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy. Arch Dis Child. 2009 Oct;94(10):752-6. doi: 10.1136/adc.2008.143537. Epub 2008 Nov 11. https://www.ncbi.nlm.nih.gov/pubmed/19001477

 

Efficacy of cognitive behavioral therapy for adolescents with chronic fatigue syndrome: long-term follow-up of a randomized, controlled trial

Abstract:

OBJECTIVES: The purpose of this work was to assess the long-term outcome of adolescents with chronic fatigue syndrome who received cognitive behavioral therapy and to determine the predictive value of fatigue severity and physical impairments of the adolescent and the fatigue severity of the mother at baseline for the outcome of the treatment at follow-up.

PATIENTS AND METHODS: Sixty-six adolescent patients with chronic fatigue syndrome who previously participated in a randomized, controlled trial that showed that cognitive behavioral therapy was more effective than a waiting-list condition in reducing fatigue and improving physical functioning were contacted for a follow-up assessment. Fifty participants of the follow-up study had received cognitive behavioral therapy for chronic fatigue syndrome (32 formed the cognitive behavioral therapy group in the original trial, and 18 patients received cognitive behavioral therapy after the waiting period). The remaining 16 patients had refused cognitive behavioral therapy after the waiting period. The main outcome measures were fatigue severity (Checklist Individual Strength), physical functioning (Short-Form General Health Survey), and school attendance.

RESULTS: Data were complete for 61 patients at follow-up (cognitive behavioral therapy group: 47 patients; no-treatment group: 14 patients). The mean follow-up time was 2.1 years. There was no significant change in fatigue severity between posttreatment and follow-up in the cognitive behavioral therapy group. There was a significant further increase in physical functioning and school attendance (10% increase). The adolescents in the cognitive behavioral therapy group were significantly less fatigued and significantly less functionally impaired and had higher school attendance at follow-up than those in the no-treatment group. Fatigue severity of the mother was a significant predictor of treatment outcome.

CONCLUSIONS: The positive effects of cognitive behavioral therapy in adolescents with chronic fatigue syndrome are sustained after cognitive behavioral therapy. Higher fatigue severity of the mother predicts lower treatment outcome in adolescent patients.

 

Source: Knoop H, Stulemeijer M, de Jong LW, Fiselier TJ, Bleijenberg G. Efficacy of cognitive behavioral therapy for adolescents with chronic fatigue syndrome: long-term follow-up of a randomized, controlled trial. Pediatrics. 2008 Mar;121(3):e619-25. doi: 10.1542/peds.2007-1488. https://www.ncbi.nlm.nih.gov/pubmed/18310181

 

Chronic fatigue syndrome in children aged 11 years old and younger

Abstract:

Children in primary school can be very disabled by chronic fatigue syndrome or ME (CFS/ME). The clinical presentation in this age group (under 12 years old) is almost identical to that in older children.

AIM: To describe children who presented to the Bath paediatric CFS/ME service under the age of 12 years.

METHOD: Inventories measuring fatigue, pain, functional disability, anxiety, family history and symptoms were collected prospectively for all children presenting to the Bath CFS/ME service between September 2004 and April 2007. Data from children who presented to the service under the age of 12 are described and compared to those who presented at age 12 or older.

RESULTS: 178 children (under the age of 18) were diagnosed as having CFS/ME using the RCPCH criteria out of 216 children assessed. The mean age at assessment for children with CFS/ME was 14.5 years old (SD 2.9). Thirty-two (16%) children were under 12 years at the time of assessment, four children were under 5 years and the youngest child was 2 years old. Children under 12 were very disabled with mean school attendance of just over 40% (average 2 days a week), Chalder fatigue score of 8.29 (CI 7.14 to 9.43 maximum possible score = 11) and pain visual analogue score of 39.7 (possible range 0-100). Comparison with children aged 12 or older showed that both groups were remarkably similar at assessment. Twenty-four out of the 26 children with complete symptom lists would have been diagnosed as having CFS/ME using the stricter adult Centers of Disease Control and prevention (CDC) criteria.

CONCLUSION: Disability in the under-12 age group was high, with low levels of school attendance, high levels of fatigue, anxiety, functional disability and pain. The clinical pattern seen is almost identical to that seen in older children, and the majority of children would also be diagnosed as having CFS/ME using the stricter adult definition.

 

Source: Davies S, Crawley E. Chronic fatigue syndrome in children aged 11 years old and younger. Arch Dis Child. 2008 May;93(5):419-21. doi: 10.1136/adc.2007.126649. Epub 2008 Jan 11. https://www.ncbi.nlm.nih.gov/pubmed/18192312

 

A matched case control study of orthostatic intolerance in children/adolescents with chronic fatigue syndrome

Abstract:

This study aimed to define cardiovascular and heart rate variability (HRV) changes following head-up tilt (HUT) in children/adolescents with chronic fatigue syndrome (CFS) in comparison to age- and gender-matched controls.

Twenty-six children/adolescents with CFS (11-19 y) and controls underwent 70-degree HUT for a maximum of 30 min, but returned to horizontal earlier at the participant’s request with symptoms of orthostatic intolerance (OI) that included lightheadedness.

Using electrocardiography and beat-beat finger blood pressure, a positive tilt was defined as OI with 1) neurally mediated hypotension (NMH); bradycardia (HR <75% of baseline), and hypotension [systolic pressure (SysP) drops >25 mm Hg)] or 2) postural orthostatic tachycardia syndrome (POTS); HR increase >30 bpm, or HR >120 bpm (with/without hypotension).

Thirteen CFS and five controls exhibited OI generating a sensitivity and specificity for HUT of 50.0% and 80.8%, respectively. POTS without hypotension occurred in seven CFS subjects but no controls. POTS with hypotension and NMH occurred in both. Predominant sympathetic components to HRV on HUT were measured in CFS tilt-positive subjects.

In conclusion, CFS subjects were more susceptible to OI than controls, the cardiovascular response predominantly manifest as POTS without hypotension, a response unique to CFS suggesting further investigation is warranted with respect to the pathophysiologic mechanisms involved.

 

Source: Galland BC, Jackson PM, Sayers RM, Taylor BJ. A matched case control study of orthostatic intolerance in children/adolescents with chronic fatigue syndrome. Pediatr Res. 2008 Feb;63(2):196-202. https://www.ncbi.nlm.nih.gov/pubmed/18091356