Practical guidance and management challenges of ME/CFS in adolescents

Australian paediatrician Dr Katherine Rowe has written a paper for practitioners, based on her own experience, which reviews the current understanding of ME/CFS and highlights effective management strategies for adolescents.

As ME/CFS disrupts educational, emotional, social and physical activities in addition to the symptoms, she says it is important to not only manage symptoms but also provide strategies for coping with its effect on the young person and the family.

A self-management plan

should be devised in partnership with the young patient, to include some:

• proactive social contact
• academic input
• physical activity and
• commitment to attend something enjoyable outside of home on a regular basis.

“They were not to leave any of these activities out, but there did not need to be an equal emphasis and some activities could incorporate several aspects, for example, social and academic, or social and enjoyable.

It was important to plan these activities so that they did not precipitate excessive post-exertional malaise and adequate time for recovery was allowed.

These tasks were to be balanced over a week taking into account their available energy. Hence, they needed to be able to sustain those weekly activities over the month before reviewing the plan and increasing some activity if they thought it was achievable. Otherwise, they would consider it the following month.”

Symptom management

“Only the most severe one or two symptoms were treated initially. Young people reported that that the importance of understanding their illness and having some control over their choices had helped with the severity of some symptoms.

Also, treating one symptom such as sleep disturbance can reduce the severity of others. Difficulties with sleep initiation, frequent waking and disturbing nightmares or sleep phase shift can be actively managed with sleep hygiene techniques and melatonin or low dose tricyclic medications such as dothiepin or amitriptyline.

If orthostatic intolerance was identified, fatigue, feelings of anxiety, concentration difficulties, complaints of headache, malaise, dizziness, nausea or sleep disturbance could be improved with simple measures.

These included increasing salt and fluid intake, compression stockings and encouraging lower limb exercises and gentle exercise. Orthostatic intolerance has been shown to be associated with reduced blood flow to the brain, so management to stabilize the disorder can reduce the severity of cognitive symptoms.

If non-pharmacological management was not sufficient, medications to modify heart rate and blood pressure were added and physical therapy introduced to increase lower limb muscle tone. Supervised gradual introduction of gentle exercise to improve cardiac reconditioning may initially be in a reclined position and then as tolerated using more upright posture.”

Read more in:

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in Adolescents: Practical Guidance and Management Challenges, by K Rowe in Adolesc Health Med Ther, Vol 2023:14 Pages 13—26 [doi.org/10.2147/AHMT.S317314]

Abstract:

This paper reviews the current understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and whether any treatment strategies have been effective.

ME/CFS is a condition of as yet unknown etiology that commonly follows an infective process. It includes a new onset of fatigue (of more than 3– 6 month duration and not relieved by rest), post-exertional malaise, cognitive difficulties and unrefreshing sleep, and frequently orthostatic intolerance, somatic symptoms and pain.

Long COVID has renewed interest in the condition and stimulated research with findings suggestive of a multisystem neuroimmune disease. There are no definitively effective treatments. Despite earlier recommendations regarding graded exercise therapy and cognitive behavior therapy, the current recommendations are managing symptoms, with lifestyle management and supportive care.

This paper provides an outline of strategies that young people and their families have reported as helpful in managing a chronic illness that impacts their life socially, physically, emotionally, cognitively and educationally. As the illness frequently occurs at a time of rapid developmental changes, reducing these impacts is reported to be as important as managing the physical symptoms.

Young people face a mean duration of 5 years illness (range 1– 16 years) with a likely residual 20% having significant restrictions after 10 years. Their feedback has suggested that symptom management, self-management strategies, advocacy and educational liaison have been the most helpful.

They value professionals who will listen and take them seriously, and after excluding alternative diagnoses, they explain the diagnosis, are supportive and assist in monitoring their progress.

Remaining engaged in education was the best predictor of later functioning. This allowed for social connections, as well as potential independence and fulfilling some aspirations. The need to consider the impact of this chronic illness on all aspects of adolescent development, as part of management, is highlighted.