Chief Medical Officer's Working Group on CFS/ME                     Home
Children's Sub-Group - Briefing No 1 - March 1999

Terms of Reference: To review management and practice in the field of CFS/ME with the aim of providing best practice guidance for professionals, patients and carers to improve the quality of care and treatment for people with CFS/ME

At its first, very positive, wide-ranging and constructive meeting, the Children's Sub-Group both mirrored the discussion of the Key Group a fortnight earlier and focused on those issues specifically affecting children and young people. The Sub-Group also agreed that its remit made it desirable to include a parent as an extra member, and to invite as participating observers, a social services representative, an educational psychologist and other experts from time to time as needed.


1.    Key Working Principles:

o    As with the key group, the sub-group intends to distribute information widely about its work, via regular post-meeting Briefings.
o    To be effective, the sub-group must operate in an atmosphere of mutual respect towards members with differing views, and aim to maximise the degree of consensus which it can achieve.
o    Smaller 'focus' groups, which may invite in outside expertise, will be set up to work on particular issues e.g. CBT, educational priorities, support for families.
o    To capture a wide range of views from those most directly affected, there will be a 'sounding board' event in the autumn for parents and children.
o    Some research finding needs to be earmarked for children's issues


2. The End Product:

o    A reliable document which will stand the test of time and lead to a consistent and effective model of care. Because it is specific to children, it will need to ensure that health, educational and social service issues are all incorporated in an integrated fashion.


3.    The labelling of CFS/ME as a psychiatric disorder

The Group had discussed the following issues: whether CFS/ME is a physical or psychiatric disorder or has both aspects; why it is frequently diagnosed as psychiatric when other unpredictable chronic diseases are not; whether it is positively being diagnosed as a psychiatric disorder or by exclusion because of a hierarchy of diagnosis, under which illnesses without obvious and clear physical signs are least likely to be diagnosed as physical; the possible need for a differential diagnosis to establish whether the fatigue associated with CFS/ME is due to a psychiatric or physical disorder; the stigma associated with psychiatric illness which leads to resistance to psychiatric diagnosis even where this is appropriate; the adverse effect on securing social security benefits if a psychiatric diagnosis is given; the need for humility, open mindedness and lack of dogmatic position-taking in the face of current uncertainties


4.    Scope of Work:

Below are the wide range of potential issues for consideration which the Group identified. This will be formulated into a work programme to be carried out in the coming eighteen months:

o    Diagnosis in children including problems around delay and lack of expertise
o    The social context i.e. problems arising because of disbelief about the reality of the illness by professionals,          family, friends, the education system, such problems being compounded by the frequent inability of children to          express the nature of their illness and symptoms.
o    Management: It is important to ask whether any intervention which is presently made is actually at all effective? Specific issues to be addressed include medication levels; the suitability of CBT and graded exercise for children; lack of informed consent to treatment; how to enable children to engage in self management.
o    Service provision including the role of community paediatricians, the relationship between paediatrics and          psychiatry and the value of a collaborative approach in achieving an appropriate diagnosis and a fully           integrated model of care.
o    Childhood development including problems around adolescence, the impact on families of a child with         CFS/ME
o    Education including missed schooling, home tuition, flexible schooling, problems arising from cognitive          disfunction, adapting solutions to be suit each individual child's needs.
o    Legal issues especially child protection, school non attendance laws, special needs entitlement and         informed consent to treatment.
o    State Benefits: are families receiving their entitlements? Any specific problems around benefits targeted to children?


3.    Future meetings

Arrangements are being made for early discussion of the following three issues

o    developing specific diagnostic criteria for children, and
o    problems around child protection law
o    organising the parents' and children's 'sounding board event


Please note: To avoid repetition, this Briefing has not reproduced debate which featured at the Key Group first meeting. It should therefore be read in conjunction with the Briefing issued after the first Key Group Meeting.

Members of the information Group contributing to this Briefings Judy Acreman Rachel Lvnds. Harvey Marcovich Naomi Wayne

Contact Point: Dr Leslev Cooper, Secretary to the Working Group, c/o Action for ME, 4 Deans Court. St Paul's Churchvard. London EC4V 5AA