Adolescents and mothers value referral to a specialist service for chronic fatigue syndrome or myalgic encephalopathy (CFS/ME)

Abstract:

BACKGROUND: Paediatric chronic fatigue syndrome or myalgic encephalopathy (CFS/ME) is relatively common and disabling. Current guidance recommends referral to specialist services, although some general practitioners believe the label of CFS/ME is harmful and many are not confident about diagnosing CFS/ME. Aim Explore whether or not adolescents and their mothers value referral to a specialist service for young people with CFS/ME.

METHODS: A qualitative study nested within a feasibility study of interventions for CFS/ME [Specialist Medical Intervention and Lightning Evaluation (SMILE)]. In-depth interviews were undertaken with 13 mothers and 12 adolescents participating in the SMILE study. Transcripts were systematically assigned codes using the qualitative data organisation package NVivo and analysed thematically using techniques of constant comparison.

RESULTS: Gaining access to the specialist service was difficult and took a long time. Mothers felt that they needed to be proactive and persistent, partly because of a lack of knowledge in primary and secondary care. Having gained access, mothers felt the CFS/ME service was useful because it recognised and acknowledged their child’s condition and opened channels of dialogue between health-care professionals and education providers. Adolescents reported that specialist medical care resulted in better symptom management, although some adolescents did not like the fact that the treatment approach limited activity.

CONCLUSIONS: Adolescents and their mothers value receiving a diagnosis from a specialist service and making progress in managing CFS/ME. General practitioners should support adolescents with CFS/ME in accessing CFS/ME specialist services, consistent with current guidance.

 

Source: Beasant L, Mills N, Crawley E. Adolescents and mothers value referral to a specialist service for chronic fatigue syndrome or myalgic encephalopathy (CFS/ME). Prim Health Care Res Dev. 2014 Apr;15(2):134-42. doi: 10.1017/S1463423613000121. Epub 2013 Apr 25. https://www.ncbi.nlm.nih.gov/pubmed/23731646

 

Depression in paediatric chronic fatigue syndrome

Abstract:

OBJECTIVE: To describe the prevalence of depression in children with chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) and investigate the relationship between depression in CFS/ME and clinical symptoms such as fatigue, disability, pain and school attendance.

DESIGN: Cross-sectional survey data using the Hospital Anxiety and Depression Scale (HADS) collected at assessment.

SETTING: Specialist paediatric CFS/ME service in the South West.

PATIENTS: Children aged 12-18 years with CFS/ME.

MAIN OUTCOME MEASURE: Depression was defined as scoring >9 on the HADS depression scale.

RESULTS: 542 subjects had complete data for the HADS and 29% (156/542) (95% CI 25% to 33%) had depression. In a univariable analysis, female sex, poorer school attendance, and higher levels of fatigue, disability, pain, and anxiety were associated with higher odds of depression. Age of child and duration of illness were not associated with depression. In a multivariable analysis, the factors most strongly associated with depression were disability, with higher scores on the physical function subscale of the 36 item Short Form (SF-36).

CONCLUSIONS: Depression is commonly comorbid with CFS/ME, much more common than in the general population, and is associated with markers of disease severity. It is important to screen for, identify and treat depression in this population.

 

Source: Bould H, Collin SM, Lewis G, Rimes K, Crawley E. Depression in paediatric chronic fatigue syndrome. Arch Dis Child. 2013 Jun;98(6):425-8. doi: 10.1136/archdischild-2012-303396. Epub 2013 Apr 25. https://www.ncbi.nlm.nih.gov/pubmed/23619200

 

Relationship between autonomic cardiovascular control, case definition, clinical symptoms, and functional disability in adolescent chronic fatigue syndrome: an exploratory study

Abstract:

Chronic Fatigue Syndrome (CFS) is characterized by severe impairment and multiple symptoms. Autonomic dysregulation has been demonstrated in several studies. We aimed at exploring the relationship between indices of autonomic cardiovascular control, the case definition from Centers for Disease Control and Prevention (CDC criteria), important clinical symptoms, and disability in adolescent chronic fatigue syndrome.

38 CFS patients aged 12-18 years were recruited according to a wide case definition (ie. not requiring accompanying symptoms) and subjected to head-up tilt test (HUT) and a questionnaire. The relationships between variables were explored with multiple linear regression analyses. In the final models, disability was positively associated with symptoms of cognitive impairments (p<0.001), hypersensitivity (p<0.001), fatigue (p=0.003) and age (p=0.007).

Symptoms of cognitive impairments were associated with age (p=0.002), heart rate (HR) at baseline (p=0.01), and HR response during HUT (p=0.02). Hypersensitivity was associated with HR response during HUT (p=0.001), high-frequency variability of heart rate (HF-RRI) at baseline (p=0.05), and adherence to the CDC criteria (p=0.005). Fatigue was associated with gender (p=0.007) and adherence to the CDC criteria (p=0.04).

In conclusion, a) The disability of CFS patients is not only related to fatigue but to other symptoms as well; b) Altered cardiovascular autonomic control is associated with certain symptoms; c) The CDC criteria are poorly associated with disability, symptoms, and indices of altered autonomic nervous activity.

 

Source: Wyller VB, Helland IB. Relationship between autonomic cardiovascular control, case definition, clinical symptoms, and functional disability in adolescent chronic fatigue syndrome: an exploratory study. Biopsychosoc Med. 2013 Feb 7;7(1):5. doi: 10.1186/1751-0759-7-5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3570350/ (Full article)

 

Chronic fatigue syndrome following infections in adolescents

Abstract:

PURPOSE OF REVIEW: To review the recent epidemiology, pathophysiology, and treatment of postinfectious chronic fatigue syndrome (CFS) in adolescents.

RECENT FINDINGS: Thirteen percent of adolescents (mainly women) met the criteria for CFS 6 months following infectious mononucleosis; the figure was 7% at 12 months and 4% at 24 months. Peak work capacity, activity level, orthostatic intolerance, salivary cortisol, and natural killer cell number and function were similar between adolescents with CFS following infectious mononucleosis and recovered controls. Autonomic system, oxygen consumption, peak oxygen pulse, psychological and cytokine network differences were documented between those who recovered and those who did not.

SUMMARY: The prognosis of CFS is better in adolescents than in adults. Activity level, exercise tolerance, and orthostatic testing could not distinguish patients with CFS from adolescents who have recovered from infectious mononucleosis (controls), while certain cytokine network analyses, life stress factors, and autonomic symptoms could.

 

Source: Katz BZ, Jason LA. Chronic fatigue syndrome following infections in adolescents. Curr Opin Pediatr. 2013 Feb;25(1):95-102. doi: 10.1097/MOP.0b013e32835c1108. https://www.ncbi.nlm.nih.gov/pubmed/23263024

 

Why do young people with CFS/ME feel anxious? A qualitative study

Abstract:

Young people with chronic fatigue syndrome or myalagic encephalopathy (CFS/ME) (CFS/ME) experience higher levels of psychological distress than healthy controls and young people with other chronic illnesses, and it was recently demonstrated that 38% of this population scored above the clinical cut-off on the Spence Child Anxiety Scale. Subscales of social and separation anxiety were consistently high across gender and age groups.

In this study, we used qualitative methods to help us understand more about these two types of anxiety in young people with CFS/ME. Eleven young people (age 12-18) were interviewed. Interviews were self-directed by the participants and were wide ranging. The transcripts were analysed using interpretative phenomenological analysis. Five superordinate themes were identified: social loss and adjustment; introduction of uncertainty and unpredictability; the vulnerable self; individual differences; and contributions towards recovery.

Many themes were identical to those described in young people coping with other chronic illnesses in adolescence. In addition, young people with CFS/ME describe experiences associated with the perceived illegitimacy of this condition, namely: feeling unable to explain their illness; bullying from peers; disbelief; and distrust from adults around them. This becomes an additional challenge for these young people. Clinicians need to be aware of these problems, and offer appropriate support.

 

Source: Fisher H, Crawley E. Why do young people with CFS/ME feel anxious? A qualitative study. Clin Child Psychol Psychiatry. 2013 Oct;18(4):556-73. doi: 10.1177/1359104512460862. Epub 2012 Oct 23. https://www.ncbi.nlm.nih.gov/pubmed/23093520

 

Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis–a qualitative study

Abstract:

OBJECTIVES: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a serious condition characterized by debilitating but unexplained fatigue. Treatment alternatives are few, and especially so for young people. The aetiology of CFS/ME is still unclear and controversial, but rehabilitative interventions seem so far most promising. The Lightning Process is a 3-day training programme that has recently become available, but no outcome studies have yet been published. It is a non-medical training programme that combines concepts from Neuro-Linguistic Programming, Life Coaching and Osteopathy. The aim of this study was to explore the experiences of young people with CFS/ME after they had undergone the Lightning Process.

DESIGN: Qualitative research study.

METHODS: Semi-structured interviews were conducted with an opportunistic sample recruited through open advertisements of nine young people, aged 14-26, who had undergone the treatment, and three of their parents. Inductive thematic analysis was used to evaluate the content of the interviews.

RESULTS: Mostly positive experiences were reported of the Lightning Process. Two reported dissatisfaction and no improvement, while seven were satisfied and were much improved. Particular helpful aspects were the theoretical rationale, practical exercises, and the technique they learned. Less helpful aspects were the intensity and short duration of the treatment with little follow-up, the secrecy surrounding it, and feelings of being blamed if the treatment did not work.

CONCLUSIONS: As this is the first report of young people’s experiences with the Lightning Process, it will be important to consider the helpful and unhelpful treatment components for future refinement of interventions for CFS/ME.

© 2012 The British Psychological Society.

 

Source: Reme SE, Archer N, Chalder T. Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis–a qualitative study. Br J Health Psychol. 2013 Sep;18(3):508-25. doi: 10.1111/j.2044-8287.2012.02093.x. Epub 2012 Sep 19. https://www.ncbi.nlm.nih.gov/pubmed/22989369

 

Family-focused cognitive behaviour therapy versus psycho-education for adolescents with chronic fatigue syndrome: long-term follow-up of an RCT

Abstract:

The aim of this study was to investigate the long term efficacy of family-focused cognitive behaviour therapy (CBT) compared with psycho-education in improving school attendance and other secondary outcomes in adolescents with chronic fatigue syndrome (CFS). A 24 month follow-up of a randomised controlled trial was carried out.

Participants received either 13 one-hour sessions of family-focused CBT or four one-hour sessions of psycho-education. Forty-four participants took part in the follow-up study. The proportion of participants reporting at least 70% school attendance (the primary outcome) at 24 months was 90% in CBT group and 84% in psycho-education group; the difference between the groups was not statistically significant (OR = 1.29, p = 0.80).

The proportion of adolescents who had recovered in the family-focused CBT group was 79% compared with 64% in the psycho-education, according to a definition including fatigue and school attendance. This difference was not statistically significant (Fisher’s exact test, p = 0.34). Family-focused CBT was associated with significantly better emotional and behavioural adjustment at 24 month follow-up compared to psycho-education, as reported by both adolescents (F = 6.49, p = 0.02) and parents (F = 4.52, P = 0.04). Impairment significantly decreased in both groups between six and 24 month follow-ups, with no significant group difference in improvement over this period. Gains previously observed for other secondary outcomes at six month follow-up were maintained at 24 month follow-up with no further significant improvement or group differences in improvement.

In conclusion, gains achieved by adolescents with CFS who had undertaken family-focused CBT and psycho-education generally continued or were maintained at two-year follow-up. The exception was that family-focused CBT was associated with maintained improvements in emotional and behavioural difficulties whereas psycho-education was associated with deterioration in these outcomes between six and 24-month follow-up.

Copyright © 2012 Elsevier Ltd. All rights reserved.

 

Source: Lloyd S, Chalder T, Rimes KA. Family-focused cognitive behaviour therapy versus psycho-education for adolescents with chronic fatigue syndrome: long-term follow-up of an RCT. Behav Res Ther. 2012 Nov;50(11):719-25. doi: 10.1016/j.brat.2012.08.005. Epub 2012 Aug 31. https://www.ncbi.nlm.nih.gov/pubmed/22985998

 

Clonidine in the treatment of adolescent chronic fatigue syndrome: a pilot study for the NorCAPITAL trial

Abstract:

BACKGROUND: This pilot study (ClinicalTrials.gov ID: NCT01507701) assessed the feasibility and safety of clonidine in adolescent chronic fatigue syndrome (CFS). Specifically, we assessed clonidine dosage in relation to a) plasma concentration levels, b) orthostatic cardiovascular responses, and c) possible adverse effects.

FINDINGS: Five adolescent CFS patients (14-19 years old) received 50 μg clonidine twice per day during 14 days in an open, uncontrolled design. Plasma concentration of clonidine was assayed by standard laboratory methods. Changes in orthostatic cardiovascular responses were assessed by a 20o head-up tilt-test (HUT). Adverse effects were mapped by a questionnaire.After 14 days, C0 median (range) of clonidine was 0.21 (0.18-0.36) μg/L, and Cmax median (range) of clonidine was 0.41 (0.38-0.56) μg/L. Also, supine blood pressures and heart rate were lower during clonidine treatment, and the HUT response was closer to the normal response. No serious adverse effects were registered.

CONCLUSION: Clonidine 50 μg BID seems to be safe enough to proceed from a pilot study to a controlled trial in a select group of adolescents with CFS (ClinicalTrials.gov ID: NCT01040429).

 

Source: Fagermoen E, Sulheim D, Winger A, Andersen AM, Vethe NT, Saul JP, Thaulow E, Wyller VB. Clonidine in the treatment of adolescent chronic fatigue syndrome: a pilot study for the NorCAPITAL trial. BMC Res Notes. 2012 Aug 7;5:418. doi: 10.1186/1756-0500-5-418. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3461473/ (Full article)

 

Orthostatic tolerance testing in a prospective cohort of adolescents with chronic fatigue syndrome and recovered controls following infectious mononucleosis

Abstract:

Chronic fatigue syndrome (CFS) is a complex condition responsible for marked functional impairment. The authors recently reported that 6 months following acute infectious mononucleosis (IM), 13%, of adolescents met criteria for CFS. The authors’ objective was to assess standing orthostatic tolerance (SOT) in adolescents with CFS and in controls 6 months following IM.

In all, 36 of 39 adolescents diagnosed with CFS 6 months following IM and 43 of 50 recovered controls had SOT testing (SOTT) performed. χ(2) Analysis was performed to study the relationships between SOTT and the diagnosis of CFS. Adolescents diagnosed with CFS and recovered controls did not differ significantly in age, weight, or body mass index. The authors found that 9 of 36 adolescents with CFS (25%) versus 9 of 43 recovered controls (21%) had an abnormal SOTT, which was not a statistically significant difference. Adolescents who meet criteria for CFS 6 months following IM do not have, as a group, more standing orthostatic intolerance than recovered controls.

 

Source: Katz BZ, Stewart JM, Shiraishi Y, Mears CJ, Taylor R. Orthostatic tolerance testing in a prospective cohort of adolescents with chronic fatigue syndrome and recovered controls following infectious mononucleosis. Clin Pediatr (Phila). 2012 Sep;51(9):835-9. doi: 10.1177/0009922812455094. Epub 2012 Jul 31. https://www.ncbi.nlm.nih.gov/pubmed/22850676

 

Telephone-based guided self-help for adolescents with chronic fatigue syndrome: A non-randomised cohort study

Erratum in: Behav Res Ther. 2013 Aug;51(8):518.

Abstract:

The aim of this study was to gain preliminary evidence about the efficacy of a new telephone-based guided self-help intervention, based on cognitive-behavioural principles, which aimed to reduce fatigue and improve school attendance in adolescents with chronic fatigue syndrome (CFS). A non-randomised cohort design was used, with a two-month baseline period. Sixty-three 11-18 year-old participants recruited from a specialist CFS unit received the intervention. Participants received six half-hour fortnightly telephone sessions and two follow-up sessions. Fatigue and school attendance were the main outcomes and the main time point for assessing outcome was 6 months post-treatment.

Using multi-level modelling, a significant decrease in fatigue was found between pre-treatment and 6 month follow-up, treatment effect estimate = – 5.68 (-7.63, -3.72), a large effect size (Cohen’s d = 0.79). The decrease in fatigue between pre and post-treatment was significantly larger than between baseline and pre-treatment. A significant increase in school attendance was found between pre-treatment and 6 month follow-up, effect estimate = 1.38 (0.76, 2.00), a medium effect size (d = -0.48). univariate logistic regression found baseline perfectionism to be associated with better [corrected] school attendance at six-month follow-up. In conclusion, telephone-based guided self-help is an acceptable minimal intervention which is efficacious in reducing fatigue in adolescents with CFS.

Copyright © 2012 Elsevier Ltd. All rights reserved.

 

Source: Lloyd S, Chalder T, Sallis HM, Rimes KA. Telephone-based guided self-help for adolescents with chronic fatigue syndrome: A non-randomised cohort study. Behav Res Ther. 2012 May;50(5):304-12. doi: 10.1016/j.brat.2012.02.014. Epub 2012 Mar 10. https://www.ncbi.nlm.nih.gov/pubmed/22459729