Category: Pediatric ME/CFS

Pervasive refusal syndrome

Abstract:

We report here on a case of severe pervasive refusal syndrome. This is of interest for three reasons. Firstly, most reported cases are adolescent girls; our case is regarding an adolescent boy. Secondly, he was successfully treated at home and thirdly, the serology showed an apparent infective pre-cursor to the illness with evidence of possible autoimmune serology. A 14-year old boy deteriorated from a picture where diagnosed CFS/ME developed into Pervasive Refusal Syndrome. This included the inability to move or speak, with closed eyes, multiple tics, facial grimacing, heightened sensitivity to noise (hyperacusis) and touch (hyperaesthesia), and inability or unwillingness to eat anything except small amounts of sloppy food. Successful rehabilitation is reported. Finally the issue of nomenclature is discussed, raising the question whether Pervasive Refusal Syndrome would be better renamed in a way that does not imply that the condition is always volitional and oppositional, as this can distract focus away from an alliance between family and clinicians.

 

Source: Wright B, Beverley D. Pervasive refusal syndrome. Clin Child Psychol Psychiatry. 2012 Apr;17(2):221-8. doi: 10.1177/1359104511403680. Epub 2011 Jul 6. https://www.ncbi.nlm.nih.gov/pubmed/21733931

 

Factors affecting duration of chronic fatigue syndrome in pediatric patients

Abstract:

OBJECTIVE: To determine factors affecting duration of chronic fatigue syndrome (CFS) in pediatric patients.

METHODS: This Retrospective cohort consisted of patients with CFS at the regional referral infectious disease clinic for evaluation of fatigue in children and adolescents. Demographic, clinical, and laboratory data were analyzed to identify the impact on duration and severity of pediatric CFS.

RESULTS: A total number of 53 predominantly white (98.1%) patients with CFS, aged 9-18 years, were included in the study. Other than fatigue, headaches and sleep disturbance were the most common symptoms of pediatric CFS. Seropositive status for Borrelia burgdorferi (B. burgdorferi) and Epstein-Barr virus (EBV) was identified in 66% of the patients with the diagnosis of CFS by CDC criteria. No association was found between the CFS symptoms, gender, or age at diagnosis and duration of fatigue symptoms. Duration of CFS was associated with high Body-Mass Index (BMI) in a regression model after adjustment for patient’s age, gender, and seropositive status for B. burgdorferi and/or EBV (0.34 ± 0.15, P < 0.04).

CONCLUSIONS: BMI is significantly associated with prolonged duration of CFS.

 

Source: Petrov D, Marchalik D, Sosin M, Bal A. Factors affecting duration of chronic fatigue syndrome in pediatric patients. Indian J Pediatr. 2012 Jan;79(1):52-5. doi: 10.1007/s12098-011-0463-4. Epub 2011 May 27. https://www.ncbi.nlm.nih.gov/pubmed/21617905

 

What to do about attention and memory problems in children with CFS/ME: a neuropsychological approach

Abstract:

Our recent research has shown that children with chronic fatigue syndrome/myalgic encephalomyopathy (CFS/ME) describe problems with focused attention, sustained attention, recall and stress. Neuropsychological testing demonstrated lower scores for sustained attention, switching attention, divided attention, auditory learning and immediate recall compared to normative data. This paper describes what is currently known about memory and attention problems in children with CFS/ME and suggests a variety of strategies that could be used to overcome these difficulties.

 

Source: Tucker P, Haig-Ferguson A, Eaton N, Crawley E. What to do about attention and memory problems in children with CFS/ME: a neuropsychological approach. Clin Child Psychol Psychiatry. 2011 Apr;16(2):215-23. doi: 10.1177/1359104511403585.https://www.ncbi.nlm.nih.gov/pubmed/2157176

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Fatigue, depressive symptoms, and anxiety from adolescence up to young adulthood: a longitudinal study

Abstract:

Fatigue is a common complaint among adolescents. We investigated the course of fatigue in females during the transition from adolescence to young adulthood and examined psychological, immunological, and life style risk factors for development of fatigue and chronic fatigue syndrome (CFS)-related symptoms.

Six hundred and thirty-three healthy females (age 14.63±1.37 years) filled out questionnaires measuring fatigue severity, depressive symptoms, anxiety, chronic fatigue syndrome (CFS)-related symptoms, sleep features, and life style characteristics at baseline and 4½ years thereafter.

Of 64 participants LPS- and CD2CD28-induced cytokine data at baseline were available. The best predictor of fatigue in young adulthood was previous fatigue severity. In participants who were non-fatigued during adolescence and who experienced a notable increase in fatigue, fatigue development was preceded by emotional problems and CFS-related complaints during adolescence. Increases as well as decreases in fatigue severity were accompanied by respectively increase and decrease in depressive symptoms and anxiety, suggesting that these symptoms cluster and co-vary over time.

Higher interferon (IFN)-γ, higher IFN-γ/interleukin (IL)-4 ratio, lower tumor necrosis factor-α and lower IL-10 at baseline were related to fatigue severity at follow up. The rise in total number of CFS-related symptoms at follow up was predicted by anxiety and decreased physical activity during adolescence. Sleep and substance use were associated with fatigue severity and anxiety and depression.

In conclusion, vulnerability to develop fatigue and associated symptoms in young adulthood can to a certain extent be identified already years before the manifestation of complaints.

Copyright © 2011 Elsevier Inc. All rights reserved.

 

Source: ter Wolbeek M, van Doornen LJ, Kavelaars A, Tersteeg-Kamperman MD, Heijnen CJ. Fatigue, depressive symptoms, and anxiety from adolescence up to young adulthood: a longitudinal study. Brain Behav Immun. 2011 Aug;25(6):1249-55. doi: 10.1016/j.bbi.2011.04.015. Epub 2011 Apr 28. https://www.ncbi.nlm.nih.gov/pubmed/21549830

 

Cognitive dysfunction and mental fatigue in childhood chronic fatigue syndrome–a 6-month follow-up study

Abstract:

OBJECTIVES: Cognitive function was investigated in patients with childhood type chronic fatigue syndrome (CCFS) using the modified advanced trail making test (mATMT).

METHODS: mATMT was performed on 19 patients with CCFS and 25 healthy controls of comparable age and sex. The effectiveness of combined treatment with cognitive behavioral therapy (CBT) and pharmacotherapy and its relationship to cognitive function was investigated by evaluation of Chalder’s fatigue scale and behavior state before and after treatment for 6 consecutive months.

RESULTS: All three tasks (motor skill, selective and alternative attention, and spatial working memory) of the mATMT, especially the difference in reaction time of the alternative attention task, could discriminate CCFS patients from control subjects with 70.5% accuracy (P=0.007). CCFS patients showed significantly lower alternative attention and Chalder’s fatigue score before treatment (P=0.037 and 0.002, respectively). A significant improvement in performance status scores was found during the 6 months follow-up period with combined treatment with CBT and medication (P<0.001). Improvement of their cognitive symptoms was significantly correlated with improvement of alternative attention (r=0.653, P=0.002).

CONCLUSIONS: Higher-order level cognitive dysfunction affects CCFS pathogenesis. Alternative attention performance evaluated by the mATMT may be used to monitor improvement in patients with CCFS. Combined treatment with CBT and medication may be effective to improve poor attention characteristics associated with CCFS.

Copyright © 2011 The Japanese Society of Child Neurology. Published by Elsevier B.V. All rights reserved.

 

Source: Kawatani J, Mizuno K, Shiraishi S, Takao M, Joudoi T, Fukuda S, Watanabe Y, Tomoda A. Cognitive dysfunction and mental fatigue in childhood chronic fatigue syndrome–a 6-month follow-up study. Brain Dev. 2011 Nov;33(10):832-41. doi: 10.1016/j.braindev.2010.12.009. Epub 2011 May 6. https://www.ncbi.nlm.nih.gov/pubmed/21530119

 

Adolescent chronic fatigue syndrome: prevalence, incidence, and morbidity

Abstract:

OBJECTIVE: To determine nationwide general practitioner (GP)-diagnosed prevalence and pediatrician-diagnosed incidence rates of adolescent chronic fatigue syndrome (CFS), and to assess CFS morbidity.

DESIGN AND SETTING: We collected data from a cross-sectional national sample among GPs and prospective registration of new patients with CFS in all pediatric hospital departments in the Netherlands.

PATIENTS AND METHODS: Study participants were adolescents aged 10 to 18 years. A representative sample of GPs completed questionnaires on the prevalence of CFS in their adolescent patients. Pediatric hospital departments prospectively reported new cases of CFS in adolescent patients. For every new reported case, a questionnaire was sent to the reporting pediatrician and the reported patient to assess CFS morbidity. Prevalence was estimated through the data from GP questionnaires and incidence was estimated on the basis of cases newly reported by pediatricians from January to December 2008.

RESULTS: Prevalence was calculated as 111 per 100 000 adolescents and incidence as 12 per 100 000 adolescents per year. Of newly reported patients with CFS, 91% scored at or above cutoff points for severe fatigue and 93% at or above the cutoff points for physical impairment. Forty-five percent of patients with CFS reported >50% school absence during the previous 6 months.

CONCLUSIONS: Clinically diagnosed incidence and prevalence rates show that adolescent CFS is uncommon compared with chronic fatigue. The primary adverse impact of CFS is extreme disability associated with considerable school absence.

 

Source: Nijhof SL, Maijer K, Bleijenberg G, Uiterwaal CS, Kimpen JL, van de Putte EM. Adolescent chronic fatigue syndrome: prevalence, incidence, and morbidity. Pediatrics. 2011 May;127(5):e1169-75. doi: 10.1542/peds.2010-1147. Epub 2011 Apr 18. https://www.ncbi.nlm.nih.gov/pubmed/21502228

 

Chronic fatigue syndrome: a qualitative investigation of young patient’s beliefs and coping strategies

Abstract:

PURPOSE: The aim of this pilot study was to explore illness beliefs and coping strategies among adolescent patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), applying a qualitative methodology. Recent studies have explored the illness beliefs and coping strategies of adult patients with CFS/ME as possible contributing factors to the disease aetiology. These studies have mainly used quantitative methods, finding that patients often explain their illness as being due to physical causes, deny psychological causes and make use of passive and avoidant coping strategies.

METHOD:Semi-structured, in-depth interviews were conducted with nine adolescent patients with CFS/ME, thematic analysis was adapted to the material and the results were interpreted in light of theories of attribution and coping.

RESULTS: The qualitative method allowed for more complex and nuanced accounts of illness experience. The findings showed that the adolescents differ from what has previously been reported, applying more varied and flexible illness attributions and coping mechanisms than expected.

CONCLUSIONS: The heterogeneity suggested in the results has implications. We suggest three perspectives should be taken into account, both for further research and in clinical practice: (1) individual differences; (2) a developmental perspective and (3) interactive relational focus.

 

Source: Hareide L, Finset A, Wyller VB. Chronic fatigue syndrome: a qualitative investigation of young patient’s beliefs and coping strategies. Disabil Rehabil. 2011;33(23-24):2255-63. doi: 10.3109/09638288.2011.568663. Epub 2011 Apr 7. https://www.ncbi.nlm.nih.gov/pubmed/21473686

 

Adolescents with severe chronic fatigue syndrome can make a full recovery

Abstract:

The needs of children and adolescents severely affected by chronic fatigue syndrome, myalgic encephalomyelitis (CFS/ME) are currently inadequately addressed in the UK. Sadly, there are few specialists addressing the needs of these patients who are primarily bed-bound, wheelchair users or who can only leave home on an infrequent basis. Uncertainty about what to offer as well of a lack of funding may play a part. Action for Young people with ME (AYME) suggests that at least 350 severely affected children/adolescents are receiving little or inadequate care to help them overcome this debilitating illness. This case report illustrates how recovery can occur with pragmatic rehabilitation combined with a committed compassionate family based approach.

 

Source: Burgess M, Chalder T. Adolescents with severe chronic fatigue syndrome can make a full recovery. BMJ Case Rep. 2011 May 10;2011. pii: bcr0120113716. doi: 10.1136/bcr.01.2011.3716. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3091076/ (Full article)

 

Elevated nocturnal blood pressure and heart rate in adolescent chronic fatigue syndrome

Abstract:

AIM: To compare ambulatory recordings of heart rate (HR) and blood pressure in adolescents with chronic fatigue syndrome (CFS) and healthy controls. We hypothesized both HR and blood pressure to be elevated among CFS patients.

METHODS: Forty-four CFS patients aged 12-18 years were recruited from our paediatric outpatient clinic. The controls were 52 healthy adolescents having similar distribution of age and gender. 24-h ambulatory blood pressure and HR were recorded using a validated, portable oscillometric device.

RESULTS: At night (sleep), HR, mean arterial blood pressure and diastolic blood pressure were significantly higher in CFS patients as compared with controls (p < 0.01). During daytime, HR was significantly higher among CFS patients (p < 0.05), whereas blood pressures were equal among the two groups.

CONCLUSIONS: The findings support previous experimental evidence of sympathetic predominance of cardiovascular control in adolescent CFS patients. Also, the findings prompt increased focus on cardiovascular risk assessment and suggest a possible target for therapeutic intervention.

© 2010 The Author(s)/Acta Paediatrica © 2010 Foundation Acta Paediatrica.

 

Source: Hurum H, Sulheim D, Thaulow E, Wyller VB. Elevated nocturnal blood pressure and heart rate in adolescent chronic fatigue syndrome. Acta Paediatr. 2011 Feb;100(2):289-92. doi: 10.1111/j.1651-2227.2010.02073.x. Epub 2010 Nov 17. https://www.ncbi.nlm.nih.gov/pubmed/21059182

 

Polymorphisms of adrenergic cardiovascular control genes are associated with adolescent chronic fatigue syndrome

Abstract:

AIM: To explore the frequency of polymorphisms in adrenergic cardiovascular control genes in adolescent with chronic fatigue syndrome (CFS) and the relation of such polymorphisms to cardiovascular variables.

METHODS: DNA from 53 patients with CFS, 12-18 years old, was analysed for five single nucleotide polymorphisms (SNPs) in the genes catechol-O-methyltransferase (COMT), the β₂ -adrenergic receptor (two SNPs), the β₁ -adrenergic receptor and the α₂(a) -adrenergic receptor. Frequencies were compared to a reference population constructed from the National Center for Biotechnology Information (NCBI) database, and associations between frequencies and autonomic cardiovascular responses during a 20° head-up tilt-test were explored.

RESULTS: For the COMT SNP Rs4680, patients with CFS had a higher frequency of the AA genotype and a lower frequency of the G containing genotypes (AG and GG), when compared to the reference sample (p = 0.046). Also, the AA genotype was associated with a smaller increase in LF/HF ratio (low-frequency:high-frequency heart rate variability ratio, an index of cardiac sympathovagal balance) during head-up tilt when compared to the AG/GG genotypes. For the β₂ -adrenergic receptor SNP Rs1042714, patients with CFS had a lower frequency of the GG genotype and a higher frequency of the genotypes containing C (CG and CC) (p = 0.044).

CONCLUSIONS: CFS might be related to polymorphisms of COMT and the β₂ -adrenergic receptor. More details of the molecular mechanisms remain to be investigated.

© 2010 The Author(s)/Acta Paediatrica © 2010 Foundation Acta Paediatrica.

 

Source: Sommerfeldt L, Portilla H, Jacobsen L, Gjerstad J, Wyller VB. Polymorphisms of adrenergic cardiovascular control genes are associated with adolescent chronic fatigue syndrome. Acta Paediatr. 2011 Feb;100(2):293-8. doi: 10.1111/j.1651-2227.2010.02072.x. Epub 2010 Nov 18. https://www.ncbi.nlm.nih.gov/pubmed/21059181