Lothian Centre for Inclusive Living
A user led organisation established in 1991 to provide a range of practical services to disabled adults in the Lothian region. It is managed and staffed by a partnership of disabled and non-disabled people.
Patient Advocate – Edinburgh Royal Infirmary (Medical)
Tel: 0131 242 3379 or 536 3232
Patient Liaison Officer – Western General Hospital (Surgical)
Tel: 0131 537 2930
Samaritans
Tel: 08457 909090
Scottish Disability Equality Forum
The SDEF works for social inclusion in Scotland through the removal of barriers and the promotion of equal access for people affected by disability. A membership organisation, it represents individuals with any type of impairment, disability organisations and groups who share their values, and aims to ensure the voices of people affected by disability are heard and heeded.
The ALLIANCE
The ALLIANCE aims to bring together hundreds of voluntary and community organisations across Scotland to give a national voice to ensure the interests and needs of people living with long term conditions are addressed.
UPDATE
Scotland’s National Disability Information Service provides general information to organisations and members of the public both on its website and via its helpline. The website offers a range of information from commonly asked questions through to equipment information, holiday information and local sources of help and advice.
Action for M.E. – About M.E. Guidance on the Management of CFS/M.E. (2008)
Are you aware of M.E.?
A booklet by Richmond and Kingston M.E. Group aimed intended to educate and inform and explain how friends, families and carers can support people with M.E.
Believe in ME: Patients’ experiences of accessing and using services report
Chief Medical Officer’s Working Group on CFS/M.E. (2002)
Evidence Based Guideline for the Management of CFS/ME in Children and Young People (2004)
Health Care Needs Assessment of Services for people living with ME-CFS (September 2010)
M.E. Support
Information on ME and related conditions, and articles on managing different aspects of the illness.
Scottish Chief Medical Officer’s Short Life Working Group on CFS/M.E. (2003)
South Australia ME/CFS Management Guidelines for General Practitioners (2004)
US Centers for Disease Control – CFS Toolkit (2006)
Voices from the Shadows
A compassionate and moving expose, bearing witness to the devastating consequences of psychiatric prejudice and medical ignorance about one of the most prevalent illness of the 21st Century. A dvd of the film is available from the edmesh library.
M.E. Association Leaflet Order Form
The M.E. Association has a wide range of leaflets and books available for for as little as £1 containing general information on M.E., tips on self management and advice on claiming benefits.
What Someone Should Know if They or Their Doctor Think They Might Have M.E.
Tymes Trust (The Young M.E. Sufferers Trust)
Enquire
Scottish advice service for additional support for learning.
The Princess Royal Trust for Carers
VOCAL
VOCAL (Voice of Carers Across Lothian) manages the CarersNet Edinburgh & Lothian website. Their services include information, advice and emotional support, training, advocacy, counselling and groupwork.
International Association for CFS/ME
MRC Research Initiatives
The Medical Research Council website gives details of current initiatives. £1.5M was made available in 2011 for new research into the mechanisms of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)
The Microbe Discovery Project UK
Arthritis Care
Arthritis Care offers free workshops and courses at various locations around Scotland to help people with long-term conditions learn how to cope with their condition and get the most out of life.
MS Society Scotland
MS Society Scotland run self management courses, primarily for people with MS, but they will accept people with other neurological conditions (including ME) if they have spaces available.
Nancy Blake Alternatives
Nancy Blake’s site features articles relating to her work as a neurolinguistic psychotherapist. At the moment her main concern is how people with ME are treated in most western countries. Her book, A Beginner’s Guide to ME/CFS, is available from the edmesh library.
Pain Association Scotland
The Pain Association runs specific pain management courses for any condition. Contact them for details.
Pain Concern
Pain Conern’s Airing Pain radio program is often focused on issues of the self management of chronic pain, and the Pain Matters magazine frequently runs articles concerning it. There is also a booklet “A Guide to Managing Pain” which addresses self-management.
Surviving Severe ME
Claire Wade’s Surviving Severe ME website lists tips for severe ME sufferers and their carers, which can also be downloaded as a pdf e-book.
The Thistle Foundation
The Thistle Foundation runs regular self management/lifestyle management courses. Some of these courses are generic (for people with any condition), and some have been run specifically for people with ME-CFS. They are 10 week courses for small groups run by health specialists and people who themselves have ME-CFS or other conditions. You can refer yourself, or go through your GP or hospital specialist. There is also an ongoing weekly M.E. Continuation Group at the Thistle, which practises relaxation, meditation, and gentle stretches.
Action for M.E. – Scottish Hub
Action for M.E. have a dedicated Scottish Hub on their site, which produces an e-newsletter and runs a forum.
East Lothian MESH Group
Chair: Marilyn McNeill, “Rowans”, Drem, North Berwick, East Lothian EH39 5BN, Tel: 01620 880651
M.E. Support Fife
Chair: Catherine Meikle, Address: “Claremont”, South Road, Cupar, Fife KY15 5JF, Tel: 01334 653202
Glasgow M.E/Chronic Fatigue Syndrome Meetup Group
M.E/CFS & Fibromyalgia Support Group, North West Cumbria
Richmond and Kingston M.E. Group
Action for M.E. Welfare Benefits Page
Citizens Advice Bureau
All offices are staffed by volunteers but dedicated benefit advisers should be available – ask if they have experience with M.E. and shop around until you find someone who does. Privacy is offered for your appointment including discussion of questions and form completion. You will need to photocopy the form and send if off but CAB should complete the forms in their entirety if you ask them to. Offer representation at appeals, including lodging of papers and accompanying clients to hearings. However, this is usually the person who dealt with your application so it is important to ask at the outset if they have experience with ME and with appeals – shop around.
Disability Rights UK
The Disability Rights Handbook is available from the edmesh library.
East Lothian Council Welfare Rights Team
Trained advisers employed by the Council. Offer help and advice on benefits and assistance in completing forms. Also offer representation at appeals.
Grapevine Lothian Disability Information Service
Grapevine provides free, confidential information and advice to disabled people, their families and any other organisation or individual looking for disability related information in Edinburgh, East Lothian and Midlothian.
Midlothian Council Welfare Rights Service
Trained advisers employed by the Council. Offer help and advice on benefits and assistance in completing forms. Also offer representation at appeals.
The 25% M.E. Group – Advocacy Worker
Dedicated advocacy worker for people severely affected by M.E. – advice given over the phone and comprehensive information on the website about completing forms and the appeals process. Do not offer representation at appeals.
West Lothian Council Advice Shop
Help you benefits issues such as checking your entitlement, help making claims, appealing unfair decisions and representation at tribunal.
