Edinburgh M.E. Self help Group

Updated March 2012

Parents and Young People

Parents of children and young people with M.E. previously formed a group to work with the Royal Hospital for Sick Children to improve services. The Group is no longer meeting but parents can keep in touch with each other informally to exchange information and experiences. For more details, email parents@edmesh.org.uk.

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.

Information has been produced by parents on Post–16 Education in Scotland, and there were 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”.

Useful educational advice is available from:

Enquire (Scottish advice service for additional support for learning)
Children in Scotland, 5 Shandwick Place, Edinburgh EH2 4RG
Tel: 0845 123 2303
Website: http://enquire.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.

The Princess Royal Trust for Carers runs about 100 carers centres in the UK. Their Glasgow office can be contacted at:
Charles Oakley House, 125 West Regent Street, Glasgow G2 2SD
Tel: 0141 221 5066
Website: http://www.carers.org/ or http://youngcarers.net/

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

VOCAL (Voice of Carers Across Lothian)
8-13 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

The Princess Royal Trust Carers of East Lothian
94 North High Street, Musselburgh EH21 7EA
Website: http://www.coel.org.uk/
Tel: 0131 665 0135
Email: centre@coel.org.uk

The Princess Royal Trust Carers of West Lothian
Strathbrock Partnership Centre, 189a West Main Street, Broxburn, EH52 5LH
Website: http://www.carers-westlothian.com/
Tel: 01506 771750
Email: office@carers-westlothian.com