What is the Natural History of Chronic Fatigue Syndrome in Young People?
Dr Katherine Rowe, Judith Moon. Royal Children’s Hospital Melbourne, Australia.
Objectives:
To follow up consecutive patients referred to the CFS clinic at the Royal Children’s Hospital between 1991 and 2009 regarding their level of functioning, self-reported perception of recovery, duration of illness and the usefulness of management strategies.
Methods:
Seven hundred and eighty eight young people age 6-18 years (mean 15 years) (M:F 1:3), were referred from family doctors or consultant pediatricians for diagnosis and management or secondary consultation. Diagnosis required a defined onset over hours or days of persistent or relapsing, debilitating fatigue, which was exacerbated with exercise and did not resolve with bed rest, duration of illness greater than 6 months, and fulfilling the criteria of Holmes et al (1988) and Fukuda et al., (1994). Standardised historical, symptom and psychological data were obtained from 398 and standardised history only, from an additional 390. 398 were followed up prospectively with questionnaires approximately each 2 years, while the second group were contacted by phone during 2010 and 2011, and a questionnaire sent if consent was obtained. The follow up questionnaire recorded functional outcomes, demographics, duration of illness, use of alternative health practitioners and reported usefulness of management strategies.
Results:
Questionnaire follow up data were obtained on at least one occasion for 342 of the 398 (86%). Six occasions between 1996 and 2008 provided 804 returns allowing more accurate timing of reported recovery with multiple data points. 78% of the additional 390 were able to be traced and provided information. The follow up for both groups ranged from 1.7 years to 21 years. The average duration of illness was reported as 5 years with range 1-15 years. By 5 years 60% reported recovery. By 12 years, 88% reported recovery (n=256), although in approximately 1/3 there was an indication that they were conscious of monitoring their workload. Less than 5% were not either studying or working part or full time, often due to other factors than CFS. Many had married (n=38) and those with children (n=15) reported being well. 90% completed or intended to complete post-secondary training. The only alternative practitioners that were deemed helpful were those that provided some relief for muscle pain with massage, or who provided good dietary advice. Restrictive diets and supplements did not reach placebo levels of response. Symptom management and the strategy of balancing social contact, physical activity, educational input and a commitment to regularly attend at least one activity each week as the most useful assistance. Every young person devised a different balance of activities and program depending on severity of illness, stage of education, family circumstances and life interests. Engagement in education was best predictor of functional outcome.
Conclusion:
The outcomes for young people in Australia are generally positive although prolonged. Ongoing support particularly in navigating the education system was highlighted by them as an essential contributor to the quality of their life and their ability to cope.
