AHMF: 98 Conference: Rowe

Follow-Up of Young People with CFS

Rowe K.S.

Department of Paediatrics, Royal Children's Hospital, Vic.

Chronic Fatigue Syndrome is a illness of more than 6 months duration of unknown aetiology characterised by excessive fatigue following minimal exercise, headaches, muscle aches and pains and difficulty concentrating. There is no known available treatment and the natural history of the illness in adolescents is also unknown. It has a significant impact on the physical, social and emotional well-being and the education of the young person.

Fifty-six adolescents were involved in a program that included symptom management, graduated exercise, a weekly plan incorporating social contact, appropriate education intervention and access to a support group. Assessment of functioning and their perception of the most useful strategies was made at 6-36 months after original contact at a mean age 16.5 years (10.7-21.3) and an average 3.2 years (sd 1.5, range 1.2-6.8 years) after onset of Chronic Fatigue Syndrome.

14 of the 45 replies (32%) considered that they were 'cured'. Half were attending school or work full time, and a further 14% were attending more than half time.

There was a significant association between 'duration of illness' and time taken until appropriate help was received, with 25% enduring 15-48 months before diagnosis and assistance. For those whose illness had lasted more than 3 years, it was an average of 14 months before diagnosis and 18 months before they received help. This contrasted with 6 and 4 months respectively for duration less than 3 years.

Seventy percent thought that their management could have been improved, with half stating that ignorance and 'arrogance' by the medical profession in not believing them contributed to their distress.

There was no difference in current level of severity of illness or improvement from baseline between those whose illness had lasted greater than compared with less than 3 years, ie., there was marked variation in severity, improvement rate and duration.

Alternative therapies were tried by 70% but only found to be useful for temporary symptom relief by 10%.

80% found management that provided information, strategies, support and school liaison was the 'turning point' in their illness.

Early recognition of the illness and implementation of a management plan is associated with patient satisfaction and shorter duration of illness irrespective of severity.