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Paediatric chronic fatigue syndrome: complex presentations and protracted time to diagnosis.
J Paediatr Child Health. 2013 Nov;49(11):919-24. doi: 10.1111/jpc.12425. Epub 2013 Oct 31.
Knight S1, Harvey A, Lubitz L, Rowe K, Reveley C, Veit F, Hennel S, Scheinberg A.
Abstract*
AIM:
The diagnosis and management of paediatric chronic fatigue syndrome (CFS) remain ongoing challenges for paediatric clinicians, particularly given its unknown aetiology and the little research on effective treatments for this condition.
The aim of this study was to describe the presenting features of new patients attending a specialist chronic fatigue clinic at a tertiary-level Australian children's hospital.
METHOD:
The medical records of all patients with an initial consultation at the chronic fatigue clinic over a 12-month period were reviewed using a standardised data collection template.
Functional impact was based on school attendance and classified according to the National Institute of Health and Clinical Excellence guidelines (2007).
RESULTS:
A total of 99 patients attending the clinic were identified.
Of these, 59 were diagnosed with CFS. Median age was 15.4 years with almost two-thirds of patients of female sex.
Median time between symptom onset and diagnosis was 15.5 months.
There was a high occurrence of fatigue, sleep disturbance, pain, postexertional malaise, and autonomic and cognitive symptoms in the group.
The functional impact of CFS was classified as mild for 20%, moderate for 66% and severe for 14% of patients.
CONCLUSIONS:
Most young people diagnosed with CFS experience symptoms for a protracted period, with considerable functional impact prior to initial tertiary service consultation.
This audit has identified important areas for research, practice development and education in relation to the management of patients with CFS.
KEYWORDS:
adolescent, chronic fatigue syndrome, chronic illness, development
PMID: 24251657 [PubMed - in process]
A total of 99 patients were scheduled to attend the CFS clinic for initial consultation over the 12-month period. Of these, 59 patients were diagnosed with CFS, 13 failed to attend and 20 did not receive a diagnosis of CFS; medical records were unavailable for 7 patients. Reasons for not receiving a diagnosis of CFS included a psychiatric diagnosis (n = 8), medical diagnosis (n = 4) or comorbid psychiatric and medical diagnoses (n = 3) that accounted for the symptom profile. A diagnosis of postviral fatigue syndrome was made in 4 patients, and no diagnosis was made for 1 patient.
Inclusion criteria were kept deliberately broad due to the ongoing variable use of CFS case definitions both clinically and in the research literature. Therefore, any patient for whom a diagnosis of CFS was made according to any criteria was included in the audit. As some case definitions indicate that CFS can be diagnosed as early as 3 months after symptom onset for paediatric cases, rather than the usual 6-month criterion for most adult case definitions,17 patients who were diagnosed following at least 3 months of experiencing symptoms were included.
Comorbidities
Comorbid diagnoses were documented for 30 of the 59 patients (51%). Documented comorbidities included depression (22%, n = 13), anxiety disorder (17%, n = 10) and a lower incidence of a range of other diagnoses including migraine (n = 3), scoliosis (n = 2), fibromyalgia (n = 2), eating disorder (n = 2), food intolerances (n = 2), joint hyperflexibility (n = 1), somatisation (n = 1), dysmenorrhoea (n = 1), behavioural issues (n = 1), attention-deficit hyperactivity disorder (n = 1), obstructive sleep apnoea (n = 1), narcolepsy (n = 1), school phobia (n = 1) and Asperger’s syndrome (n = 1).
Symptomatology
High rates of fatigue (100%, n = 59), pain (92%, n = 54) and sleep difficulties (86%, n = 51) were documented in the sample. A moderate to high proportion of patients also reported experiencing postexertional malaise (80%, n = 47) or autonomic (76%, n = 44), cognitive (66%, n = 39), neuroendocrine (58%, n = 34) or immune (54%, n = 32) symptoms. Frequencies for specific symptoms within these categories are shown in Table 2.
Number of symptoms, mean ± SD (range) 9.32 ± 3.19 (2–19)
The functional impact of CFS at the time of initial consultation was classified according to the 2007 NICE guidelines: severe (housebound), moderate (missing the equivalent of ≥1 day of school per week) or mild (attending school full-time).
Impact of chronic fatigue syndrome, n (%)
Mild 12 (20)
Moderate 39 (66)
Severe 8 (14)
A protracted PSI has the potential to impact on outcome as delayed diagnosis will also suspend potentially effective treatment and management.
However, the evidence for effective interventions in paediatric CFS is still emerging.12
12 Knight SJ, Scheinberg A, Harvey AR. Interventions in pediatric chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review. J. Adolesc. Health 2013; doi:10.1542/peds.2011-2587.