Edinburgh M.E. Self help Group

Updated July 2011

Parents and Young People

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 was 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, email parents@edmesh.org.uk.

Information has been produced by parents on Post–16 Education in Scotland, and there are also two general booklets, one produced by parents in conjunction with RHSC and City of Edinburgh Education Department called “Information for Parents and Teaching Staff Involved with Children who have CFS/ME”, and one produced by parents and the hospital called “CFS/ME and Children”.

Up to March 2010 there was a full time post funded by the City of Edinburgh Council and based at the hospital: the CFS/ME Outreach Worker for School Aged Children. This post has now been cut.

Useful educational advice is available from:

Children in Scotland 5 Shandwick Place, Edinburgh EH2 4RG
Website: www.childreninscotland.org.uk
Tel: 0131 228 8484
Email: info@childreninscotland.org.uk

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

Carers

We do not have a specific carers group at the moment, although there were plans to restart one. Contact us for up to date details.  Carers are very 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 from:

VOCAL (Voice of Carers Across Lothian)
8 Johnston Terrace, Edinburgh EH1 2PW
Website: http://www.vocal.org.uk/
Tel: 0131 622 6666 (help, advice & support)
Mon – Fri, 9am – 5pm
Email: centre@vocal.org.uk

VOCAL Midlothian
Grannies Park, Edinburgh Road EH22 1JY
Tel: 0131 663 6869
Email: midlothian@vocal.org.uk