Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer

Abstract

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease that affects children and adolescents as well as adults. The etiology has not been established. While many pediatricians and other health-care providers are aware of ME/CFS, they often lack essential knowledge that is necessary for diagnosis and treatment. Many young patients experience symptoms for years before receiving a diagnosis. This primer, written by the International Writing Group for Pediatric ME/CFS, provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents. ME/CFS is characterized by overwhelming fatigue with a substantial loss of physical and mental stamina. Cardinal features are malaise and a worsening of symptoms following minimal physical or mental exertion. These post-exertional symptoms can persist for hours, days, or weeks and are not relieved by rest or sleep. Other symptoms include cognitive problems, unrefreshing or disturbed sleep, generalized or localized pain, lightheadedness, and additional symptoms in multiple organ systems. While some young patients can attend school, on a full or part-time basis, many others are wheelchair dependent, housebound, or bedbound. Prevalence estimates for pediatric ME/CFS vary from 0.1 to 0.5%. Because there is no diagnostic test for ME/CFS, diagnosis is purely clinical, based on the history and the exclusion of other fatiguing illnesses by physical examination and medical testing. Co-existing medical conditions including orthostatic intolerance (OI) are common. Successful management is based on determining the optimum balance of rest and activity to help prevent post-exertional symptom worsening. Medications are helpful to treat pain, insomnia, OI and other symptoms. The published literature on ME/CFS and specifically that describing the diagnosis and management of pediatric ME/CFS is very limited. Where published studies are lacking, recommendations are based on the clinical observations and practices of the authors.

Paediatric patients with myalgic encephalomyelitis/chronic fatigue syndrome value understanding and help to move on with their lives

“…13 In addition, chronic illness occurring at a time of significant changes in young people, disrupting their educational, social and physical activities, creates significant challenges both for the young people and their families. 14,15 It is the commonest cause of reduced time at school 16,17 and has a significant impact on educational functioning. 18 Although there are other chronic illnesses during childhood that have physical, emotional, cognitive and educational impacts, [19][20][21][22]24 this illness does affect all these areas.…”

Chronic fatigue syndrome: progress and possibilities

“…The majority of patients with CFS report that it took longer than a year to receive a diagnosis, often because the condition is regarded as a diagnosis of exhaustive exclusion rather than a positive recognition of the characteristic fatigue state (Box 1). Necessary investigations include full blood count, urea, electrolyte and creatinine levels, liver and thyroid function tests, C‐reactive protein levels or erythrocyte sedimentation rate, and fasting blood glucose tests . Reassuringly, a systematic review of 26 studies examining CFS diagnosis in patients attending primary care with tiredness revealed a low prevalence of underlying medical conditions, including anaemia (2.8%), malignancy (0.6%), and other serious physical illnesses (4.3%) .…”

“…We retrieved publications from MEDLINE, PsycINFO, EMBASE, Cochrane and PubMed databases from 1988 to 2019 to consider aspects of clinical decision making in the diagnosis, assessment of prognosis, and management of CFS; provide an update on understanding of CFS pathophysiology; and identify priorities for improved care of patients with CFS and for future research. This review focuses on adult populations, but the condition also affects children and adolescents (reviewed elsewhere) …”

Les dosages d’IgG anti-aliments : méthodes et pertinence clinique des résultats. Position du groupe de travail de biologie de la Société française d’allergologie

“…Le syndrome de fatigue chronique (SFC) ou encéphalomyélite myalgique est une pathologie rare de l'adolescent et de l'adulte jeune caractérisée par une fatigue importante avec sensation d'épuisement, persistante depuis plus de 6 mois, sans autre cause identifiée et qui est associée à la présence d'au moins 4 critères mineurs sur 6 [86]. Elle est 3 à 4 fois plus fréquente dans le sexe féminin.…”