Health, Wellbeing, and Prognosis of Australian Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Case-Controlled Follow-Up Study.

Elisha K Josev,Sarah J Knight,Rebecca C Cole,Katherine Rowe,Lionel Lubitz,Adam Scheinberg

doi:10.3390/jcm10163603

Abstract

Background: The purpose of this study was to follow-up an Australian cohort of adolescents newly-diagnosed with ME/CFS at a tertiary paediatric ME/CFS clinic and healthy controls over a mean period of two years (range 1–5 years) from diagnosis. Objectives were to (a) examine changes over time in health and psychological wellbeing, (b) track ME/CFS symptomatology and fulfillment of paediatric ME/CFS diagnostic criteria over time, and (c) determine baseline predictors of ME/CFS criteria fulfilment at follow-up. Methods: 34 participants aged 13–18 years (25 ME/CFS, 23 controls) completed standardised questionnaires at diagnosis (baseline) and follow-up assessing fatigue, sleep quality and hygiene, pain, anxiety, depression, and health-related quality of life. ME/CFS symptomatology and diagnostic criteria fulfilment was also recorded. Results: ME/CFS patients showed significant improvement in most health and psychological wellbeing domains over time, compared with controls who remained relatively stable. However, fatigue, pain, and health-related quality of life remained significantly poorer amongst ME/CFS patients compared with controls at follow-up. Sixty-five percent of ME/CFS patients at baseline continued to fulfil ME/CFS diagnostic criteria at follow-up, with pain the most frequently experienced symptom. Eighty-two percent of patients at follow-up self-reported that they still had ME/CFS, with 79% of these patients fulfilling criteria. No significant baseline predictors of ME/CFS criteria fulfilment at follow-up were observed, although pain experienced at baseline was significantly associated with criteria fulfilment at follow-up (R = 0.6, p = 0.02). Conclusions: The majority of Australian adolescents with ME/CFS continue to fulfil diagnostic criteria at follow-up, with fatigue, pain, and health-related quality of life representing domains particularly relevant to perpetuation of ME/CFS symptoms in the early years following diagnosis. This has direct clinical impact for treating clinicians in providing a more realistic prognosis and highlighting the need for intervention with young people with ME/CFS at the initial diagnosis and start of treatment.

Highlights

Paediatric myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition of unknown etiology
This study aimed to examine trajectories of health and psychological wellbeing across an two-year period in adolescents diagnosed with ME/CFS compared with their healthy peers
It aimed to track patients’ ME/CFS symptomatology and fulfillment of paediatric ME/CFS diagnostic criteria at follow-up, and determine whether ME/CFS criteria fulfilment at follow-up could be predicted by aspects of health and psychological wellbeing at diagnosis

Summary

Introduction

Paediatric myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition of unknown etiology. Less documented are the longer-term impacts on health and wellbeing for young people with ME/CFS in the years following diagnosis, in comparison with their healthy peers Such information is invaluable for understanding illness course, prognosis, and potential targets for management and treatment of paediatric ME/CFS. Conclusions: The majority of Australian adolescents with ME/CFS continue to fulfil diagnostic criteria at follow-up, with fatigue, pain, and health-related quality of life representing domains relevant to perpetuation of ME/CFS symptoms in the early years following diagnosis. This has direct clinical impact for treating clinicians in providing a more realistic prognosis and highlighting the need for intervention with young people with ME/CFS at the initial diagnosis and start of treatment

Objectives

Methods

Results

Conclusion