Edinburgh M.E. Self help Group

Parents and young people

M.E. in children can present very different problems from that in adults. Also sometimes diagnosed as Chronic Fatigue Syndrome or Post Viral Fatigue Syndrome, it will have an effect on education and developing friendships and can make for particular difficulties in the teenage years.

There is no specific local group for young people at the moment; please let us know if you would like to start one. There is a lot of information and support especially aimed at young people from AYME, TYMES Trust and Action for M.E. See the National Organisations page for their details.

Parents of children and young people with M.E. formed a group to work with the Royal Hospital for Sick Children to improve services. The Group is continuing to meet with health and educational professionals on a regular basis, and parents can also keep in touch to exchange information and experiences. For more details, contact Lesley Innes (Home Tel 0131 334 8723) or email parents@edmesh.org.uk.

Information has been produced by parents on Post – 16 Education in Scotland, and there are also two general booklets available:

1. “Information for Parents and Teaching Staff Involved with Children who have CFS/ME” - developed by parents in conjunction with the Royal Hospital for Sick Children and the City of Edinburgh Education Department.
2. “CFS/ME and Children” - developed by parents and the hospital.

NHS Lothian also has an Outreach Worker for school aged children (funded until March 2009), who can assist with a wide range of health problems and can visit the family at home. Access is through your G.P. or consultant. GPs concerned about the possibility of ME/CFS should first refer the child or young person to a paediatrician (at the Royal Hospital for Sick Children) or, for over-13s, a physician (at the Regional Infectious Diseases Unit, Western General Hospital). Once the diagnosis has been made, then referral can be made to the Outreach Worker, who will liaise with the school.

For children who are unable to attend school due to severe health problems, the education department provide a Hospital and Outreach teaching Service (HOTS) which can be accessed through the Outreach Worker.

Useful educational advice is available from:
Children in Scotland, 5 Shandwick Place, Edinburgh EH2 4RG
Tel: 0131 228 8484
Website: www.childreninscotland.org.uk

Carers

We do not have a specific carers group at the moment. Carers are welcome at any meetings or events, and onto the Committee or as volunteers.

Further general information, advice, courses, and support for carers in Edinburgh and Lothians is available from:

VOCAL (Voice of Carers Across Lothian), 8 Johnston Terrace, Edinburgh EH1 2PW
Tel: 0131 622 6666 (General Information), 0131 622 7625 (Advocacy)
0131 446 8082 (Counselling), 0131 663 6869 (Midlothian)
Website: http://www.vocal.org.uk