Helping children with chronic fatigue

Chronic Fatigue Syndrome, or ME, affects at least one per cent of secondary school children in the UK. Around 250,000 people are diagnosed with CFS/ME in the UK and around 250 children with CFS/ME use LP each year.

Despite the number of young people affected by this debilitating condition, there has been limited guidance on how it should be treated in children. NICE recommends three treatment approaches: Cognitive Behaviouaral Therapy (CBT), Graded Exercise Therapy or Activity Management. However even with treatment, only about two thirds of children can be expected to recover in a duration as short as at six months.

The findings of a new trial, published today (Thursday 21st September) in the Journal of Archives of Disease in Childhood, has found that the Lightening Process programme can provide additional benefit to medical care alone. The SMILE (Specialist Medical Intervention and Lightning Evaluation) project was a randomized controlled trial and the first to investigate the effectiveness and cost-effectiveness of Lightning Process (LP), which cost £620 when the study was carried out, in addition to specialist medical care and compared it with specialist medical care alone in children with mild or moderate chronic fatigue syndrome also known as myalgic encephalomyelitis (CFS/ME).

The trial, carried out by researchers at the University of Bristol Medical School, recruited 100 eligible participants aged 12-to 18-years with a diagnosis of mild to moderate CFS/ME. From this randomized group, 49 were offered specialist medical care alone and 51 participants offered LP and specialist medical care. The latter group were asked to read information about LP, attended three group sessions and received follow-up phone calls with an LP practitioner. All participants were asked to complete questionnaires at regular intervals on levels of physical function, fatigue, pain, anxiety and school attendance. Statistical and cost analyses were then carried out to show that participants in the group allocated with LP in addition to specialist medical care had improved physical function, less fatigue, anxiety and depression at six months, and further improvement, including school attendance, at 12 months.

Phil Parker, PHD researcher, therapist, lecturer and author, who designed the LP programme explains: “My vision has been to help change the current landscape and reverse the fate of those who are told they have run out of medical options. So I would like to thank the researchers of Bristol University Medical School for undertaking this study, the first trial investigating LP’s effectiveness, cost-effectiveness or possible side effects. The number of children suffering from CFS/ME is eye opening, these are the formative years and a condition such as CFS could mean the loss of months and years of education, wellbeing and childhood. The study’s findings indicate that LP offered in addition to specialist medical care is effective and probably cost effective for children and young people who have been diagnosed with mild/moderate CFS/ME – not only important evidence to support the value of this intervention, but also important in creating new opportunities for how young people with CFS could be treated.”

Professor Esther Crawley, Professor of Child Health in the University’s Centre for Child and Adolescent Health and Consultant Paediatrician at the Royal United Hospital, added “I was surprised that the LP provided additional benefit to specialist medical care. This is an important study as it provides another treatment approach that some children may find helpful. Ultimately, our aim is to find the most effective treatments that can help improve the debilitating symptoms of CFS or ME in children. While these results are promising, further research is needed to establish which aspects of the LP are helpful and whether it is an effective treatment on its own and whether it could be used to help more severely affected patients.”