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We agree with Medow et al that CFS/ME in a clinical setting should be diagnosed in accordance with established criteria, and we support their assertion that proper medical evaluation for any chronic condition is essential. Indeed, we use data from clinical settings (specialist adult and pediatric CFS/ME services) as the mainstay of our research into this debilitating illness.
Our ‘CFS at age 16’ study was based on data from a birth cohort. We believe that cohort studies add to the evidence base because they avoid the bias inherent in clinical studies, where only those who access health care are represented. They allow us to explore the prevalence of CFS using a population sample to provide the denominator. We used the ALSPAC cohort for our study because we wanted to investigate, and control for, variables recorded since before the child’s birth, and because it is broadly representative of the UK population. A major limitation common to most birth cohort studies is that ‘cases’ cannot be validated by a proper medical evaluation, as we stated in our discussion.
We do not share the concerns of Medow et al that the positive association of family adversity with chronic fatigue might support a behavioural foundation for CFS/ME. Instead, we believe that our replicated findings should dispel once and for all the unhelpful notion that CFS/ME is more likely to occur in middle class families.
We acknowledge in our limitations that we were unable to differentiate...
We acknowledge in our limitations that we were unable to differentiate accurately between those with CFS and co-morbid depression and those with depression and fatigue. Given the high rate of co-morbid depression in children with CFS/ME, which we believe is due to the impact of CFS/ME (Bould et al 2013), we were reluctant to exclude all cases of depression. Instead, we reported the results of a sensitivity analysis in which adolescents with high levels of depressive symptoms were excluded.
The number of children in ALSPAC affected by traumatic events was too small to support analysis of childhood trauma. The ALSPAC family adversity index is a much broader measure of general socioeconomic adversity and, given the association that we found, would account for a larger population attributable fraction of CFS/ME. We did not investigate whether family adversity was differentially associated with CFS/ME according to presence/absence of depressive symptoms. This is something which we plan to investigate using ALSPAC data measurements at different ages.
We believe that research into this devastating condition should use a range of techniques to explore its prevalence, incidence and aetiology. Our prevalence estimates are not inconsistent with other studies, and we hope that our study serves to highlight that CFS/ME is a relatively common illness among adolescents. We trust that the Medow et al would agree with our concluding remarks that “Awareness needs to be raised to ensure that families of children affected by CFS can access specialist medical care, and that pediatricians and those looking after children are trained in the identification and management of CFS.”
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.
We have several concerns about the above-referenced study. While studying 16 year olds, the authors did not properly identify those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (they used “criteria similar to the definition of chronic disabling fatigue in children”), despite Chronic Fatigue Syndrome being part of their title. They ignored the stated caveat in the case definition which requires that the fatigue “has no other known cause” (ref 6). Not all with chronic fatigue have Chronic Fatigue Syndrome. ME/CFS comprises a subset of chronically fatigued individuals who fulfill specific diagnostic criteria, employment of which is critically important for the identification and treatment of diseases or conditions that can result in fatigue. An important component of the diagnosis is a physician's history and physical examination to exclude conditions that could explain the fatigue, including hypothyroidism, heart disease, cancer, liver failure, covert drug abuse, medication side effects, gastrointestinal/nutritional, infectious and psychiatric conditions.
The finding of a high threshold for depressive symptoms suggests an over-representation of those with depression, among whom increased Family Adversity might be an expected precursor. Perhaps individuals with chronic fatigue and a high rate of depression, as identified in this study, might have a higher rate of early childhood adversity, but the same cannot be said for those with ME/CFS. Samp...
The finding of a high threshold for depressive symptoms suggests an over-representation of those with depression, among whom increased Family Adversity might be an expected precursor. Perhaps individuals with chronic fatigue and a high rate of depression, as identified in this study, might have a higher rate of early childhood adversity, but the same cannot be said for those with ME/CFS. Samples from CFS clinics do not identify childhood trauma (sexual and physical) as a risk factor for pediatric CFS (Gjone and Wyller, 2009). In suggesting a high prevalence of Family Adversity, the Collins report may inappropriately provide support for a primarily behavioral foundation for ME/CFS.
The authors stated that participants “were not assessed by a physician, and our classification was not subject to clinical verification”, and it is possible that parents and children “reported significant levels of disabling fatigue that was caused by another disorder.” They did not however state that proper medical evaluation for this or any chronic condition is essential, particularly for children or whether follow-up care was recommended.
Not employing accepted criteria when identifying ME/CFS can result in unintended deleterious consequences, especially in the vulnerable pediatric population. Inappropriate diagnoses are potentially dangerous if “obtaining a diagnosis” confers complacence by the physician and dissuades parents from seeking medical evaluation of their child’s fatigue. And physicians may discount a diagnosis of ME/CFS and therefore employ incorrect treatments.
We therefore need to re-state the importance of using established criteria to identify ME/CFS to allow for the diagnosis, treatment, and research of the many aspects of this condition. Since the authors did not use established diagnostic criteria and employed self-evaluations of ME/CFS, their paper should be titled “Chronic Fatigue but not Chronic Fatigue Syndrome at Age 16 Years."
Gjone H, Wyller VB. Chronic fatigue in adolescence - autonomic dysregulation and mental health: An exploratory study. Acta Paediatrica, International Journal of Paediatrics 2009;98(8):1313-1318.
Heim C, Wagner D, Maloney E, Papanicolaou DA, Solomon L, Jones JF, Unger ER, Reeves WC: Early adverse experience and risk for chronic fatigue syndrome: results from a population-based study. Arch Gen Psychiatry. 2006 Nov;63(11):1258-66.
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