In early February 2005 the Royal College of Paediatric and Child Health launched guidelines on the management of CFS/ME in Children and Young People, this will be sent to all Paediatricians in the UK.
Many people were involved in the 3-year process of preparing this including AYME and AfME and our own Dr Nigel Speight. Not everyone agreed the 45 recommendations in the report, but a “consensus” was drawn from all participants. It should be noted that only 6 of the 45 recommendations could be supported by ‘good, or at least reasonable quality evidence’ (hence the needs for consensus).
Whilst we recognise this as yet one more positive shift toward the diagnosis and management of this illness, more importantly is re-emphasises the need for more research into the illness.
Highlights from the guidelines include; A clear recognition and validation of CFS/ME . Young people and their families to be regarded as partners in the treatment process, and practical advice provided on the management of the illness
What we are encouraged by is this is a big step forward for ME in young people being taken seriously and moving closer to the day when doctors will no longer say “I don’t believe in ME”
Jill Moss (Founding Director of AYME) led the patient representation on the expert group, and chaired a smaller group to produce a Young Persons Guide to CFS/ME. This excellent easy to read booklet will help all young people with ME, their parents and carers.
Copies of both documents are available online from www.ayme.org.uk or www.rcpch.org.uk We do have a limited number of the Young People’s guide in the office – simply give us a call.