Management advice for children with chronic fatigue syndrome: a systematic study of information from the internet

Abstract

AbstractObjectives:Parents often present practising clinicians who see children with chronic fatigue syndrome with printouts from the internet. These are then brought into the discussion about the management and aetiology of this debilitating condition. We set out to systematically study the information on the internet on this subject and to explore the diversity of advice in relation to current research knowledge.Method:Systematic search by means of the internet browser Netscape Navigator and search engines AltaVista and Yahoo! Advice about levels of rest, exercise, medication, psychological interventions and suggestions about return to school is critically compared with current research evidence.Results:Thirteen websites were accessed. All have some treatment advice. Six offer conflicting advice about levels of rest, with two suggesting large amounts of rest, two suggesting some rest and two suggesting graded exercise. Nine suggest medications (with a wide variety of pharmacological activities) despite the lack of research evidence showing a significant contribution from medication. Four suggest psychological treatments but some advise that it is unnecessary despite the established evidence in chronic fatigue (and other chronic illnesses) that appropriate psychological treatments are helpful. There are a wide variety of differing diets recommended.Conclusions:Few websites provide useful management advice. Advice offered is often in conflict. Some of the advice is either contrary to current research evidence or not supported by it. This raises concerns about inaccurate information reaching families who have a child with chronic fatigue syndrome, with potentially damaging consequences. This suggests a need for a debate about the availability and validation of health related information on the internet.