From the International Journal of Pediatrics, vol. 2013, Article ID 270373, 5 pages, 2013. doi:10.1155/2013/270373 (open access)
Research Article – CFS in Children and Adolescent: Ten Years of Retrospective Clinical Evaluation
Irene Elgen(1,2), Omar Hikmat(3), Tora N. Aspevik(2), and Ellen Merete Hagen(2)
1) Department of Child and Adolescent Psychiatry, Haukeland University Hospital, 5021 Bergen, Norway
2) Department of Clinical Medicine, University of Bergen, P.O Box 7804, 5020 Bergen, Norway
3) Department of Paediatrics, Haukeland University Hospital, Jonas Lies Vei 65, 5021 Bergen, Norway
Abstract
AIM
To estimate number of children being diagnosed with chronic fatigue syndrome (CFS).
METHODS
For a period of 10 years (2002–2011) data from children being referred for fatigue symptoms were collected retrospectively.
RESULTS
Thirty-seven children were referred. Four were excluded due to incorrect coding. Six (18%) patients received other diagnoses at the end of evaluation time. Of the 27 who received the diagnosis G93.3, four had a previous chronic illness, while 23 patients were previously healthy.
All patients reported onset of fatigue symptom in relation to an infection, and all tested positive for IgG to either Epstein-Barr virus, cytomegalovirus or borrelia, indicating previous infection.
There were 16 (59%) boys among the 27 patients. The mean age at the debut of fatigue symptoms was 141 months (SD 30) for boys and 136 months (SD 31) for girls, respectively. Being underweight, defined as BMI < 17.5, was found in 12 (44%) patients.CONCLUSIONAn increasing number of children and adolescents are evaluated for CFS. The clinical assessment of children and adolescents with possible CFS need systematically evaluation. Nutritional status, possible eating disorder, and psychosocial issues need to be addressed and evaluated carefully. A multidisciplinary approach is essential when assessing CFS in children and adolescents. There is a need for European guidelines.
From Medical Hypotheses, 15 July 2013.
Allostatic overload in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
Megan Anne Arroll (drarroll@theoptimumhealthclinic.com)
Abstract
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition characterised by diverse symptoms such as fatigue, pain, sleep disturbance and autonomic dysfunction.
There remains to be a singular biomarker identified for this illness, hence numerous theories about its development and perpetuation have been posited in the literature.
This brief report presents the model of ‘allostasis’ as a framework for understanding ME/CFS, specifically the notion that the physiological mechanisms employed in the body to deal with stress termed here as ‘allostatic states’ (e.g. elevation of inflammatory cytokines), may in and of themselves contribute to the perpetuation of the disorder.
This theoretical assertion has important consequences for the understanding of ME/CFS and treatment; rather than searching for a singular pathogen responsible for this condition, ME/CFS can be conceptualised as a maladaptive stress disorder and interventions aimed at addressing the allostatic states may be incorporated into current symptom management programmes.
From the British Journal of Health Psychology, September 2013 (first published online on 19 September 2012).
Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis – a qualitative study
Silje Endresen Reme(1,*), Nicola Archer(2), Trudie Chalder(2)
1) Harvard School of Public Health, Harvard University, Boston, Massachusetts, USA
2) Department of Psychological Medicine, King's College London, UK
*Correspondence should be addressed to Silje Endresen Reme, 450 Brookline Avenue, LW 731, Boston, MA 02215, USA (e-mail: sreme@hsph.harvard.edu).
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.
STATEMENT OF CONTRIBUTION
What is already known on this subject?
Treatment alternatives for people with CFS/ME are few, especially for young people. The Lightning Process is a popular treatment programme that has recently become available, but no studies involving the treatment have yet been published. Feelings of blame or dismissal in CFS/ME patients lead to withdrawal or disengagement from professionals.
What does this study add?
The Lightning Process for young people with CFS/ME encompasses many positive aspects, particularly the practical aspects of the treatment programme. The more extreme position taken by the Lightning Process in denying the limitations of the illness seem to produce divergent results in various young people; some found it liberating and therapeutic, whilst others did not respond well to it and were left feeling guilty and blamed.
I’m a bit concerned that somebody with the theroetical stance taken by Megan Anne Arroll is to be involved with the Ramsay funded project into PEM.
“.. seven were satisfied and were much improved. ”
I’d like to see clarification in future studies (on this topic and any topic) about the word ‘improvement’. It is a very vague word.
I’d like to know, for eg: Did the patient subsequently spend much less time asleep? Did they spend much less time in bed? Were they able to engage in normal family activities during the week? Were they able to walk to school/or down to the shops and back every day in the week? Are they back at school full time (without having to go to bed afterwards during the day)? Are they participating in school sports every week (without missing subsequent days of schooling)? Are they out socialising with their friends regularly? Are they well enough to go on a holiday abroad with their family? etc etc
i.e. Encourage all researchers to pin down exactly: what does this word ‘improvement’ mean?
Otherwise, a good study looking at several controversial areas and particularly glad the last sentence was included.
The authors of the LP study are referring to the personal feelings of the children, not any biological change. Considering the children were not shown to all have the same discrete illness and that there is no evidence of any biological change before and after LP, and owing to the ease with which children compared to adults are more likely to feel the need to please the examiners as to the benefit of the claimed treatment, the results are best seen as merely the product of using subjective measures on children. There is no scientific evidence any child had the neurological disease ME and no scientific evidence that LP is a treatment for ME or any other illness.
nb – My comment above refers to the Lightning Process research article. (Apologies for MY lack of clarity!)