Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS): good practice statement
Guidance to support the diagnosis and management of ME/CFS in primary care. This was originally published in 2010 and we have partially updated it to insert key recommendations from the NICE Guideline on ME/CFS published in October 2021.
Appendix 1 – Useful resources and contacts
This updated appendix has been kindly produced by Action for ME and partners. Scottish Government is not responsible for the content of external resources.
Scottish Good Practice Statement (SGPS) Appendix 1
Useful contacts
Organisation / Service or Purpose / Contact details
ALISS (A Local Information System for Scotland)
- Help to find local information and services
- Website: A Local Information System for Scotland
AskSARA
- Impartial advice about equipment to help make daily living easier
- Website: Make life easier in three simple steps with AskSARA
Centre for Inclusive Living Edinburgh
- Services and support for independent living
- Website: Home - Lothian Centre for Inclusive Living (LCIL) (lothiancil.org.uk)
Centre for Inclusive Living Glasgow
- Services and support for independent living
- Website: Centre for Inclusive Living Glasgow
Citizens Advice Bureau
- A charity providing advice on benefits, employment rights and housing.
- Website: Citizens Advice Bureau
Department for Work and Pensions (DWP)
- Information on benefits and pensions.
- Website: Department for Work and Pensions
Disability Rights UK
- Advice and information
- Website: Disability Rights UK
Jobcentre Plus
- Benefits
- Website: Jobcentre Plus
Social Security Scotland
- Scotland specific benefits
- Website: Social Security Scotland
Further Resources (in addition to publications cited in Section 8 – bibliography)
1. NICE Guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.
2. Pacing for people with ME: A detailed guide to managing energy, rest and activity for adults with mild/moderate M.E..
3. M.E. and Work: A guide for people with M.E. who are in or actively seeking work, or considering employment in the future.
4. ME Association ME/CFS/PVFS Clinical & Research Guide (2022 Edition): The most comprehensive, evidence-based summary of ME-CFS-PVFS currently available. It contains everything that health professionals, patients, and the people who care for them need to know about this devastating neurological disease. (Provided free to UK health and care professionals on request)
5. NICE Guideline on ME/CFS: An ME Association Summary: Practical implementation of the Guideline for NHS and social care service's symptom recognition, diagnosis, management, referral, and ongoing care and support.
6. Diagnosing ME/CFS – The Importance of an Early & Accurate Diagnosis: Explains why an early and accurate diagnosis is important, and the relevant guidance in the 2021 NICE Clinical Guideline. It examines core symptoms, the needs for a full clinical history, suitable clinical investigations and tests, and consideration of other explanations for persistent symptoms.
7. Covid-19: Long Covid & ME/CFS: Reviews the overlaps between Long Covid and ME-CFS, and explains how people with Long Covid can safely learn to manage their symptoms and any continuing disability.
8. MEE Medical: The Magazine for Healthcare Professionals: Provided free to UK health and care professionals on request, this quarterly covers News, Research. Guidelines into Practice, and topical discussion on aspects of providing effective service to ME patients.
9. A-Z of Symptom Management: Medical management of ME/CFS aims to relieve symptoms and improve or sustain functional ability. This booklet summarises how drugs, self-help strategies, and therapies can be used to manage some of the most common symptoms. (Provided free to UK health and care professionals on request)
National ME charities
Organisation / Service or Purpose / Contact details
Action for ME
- We are an organisation for people with M.E. led by people with M.E.
- Services: Information & Support Advocacy Healthcare
- Tel: 0117 927 9551
- Email: questions@actionforme.org.uk
- Website: Action for ME
The ME Association
- We provide information and support on ME-CFS, fund research, and campaign to improve provisions affecting patients, carers and professionals.
- Tel: 01280 818963 (Mon-Fri, 09.30 - 15.00)
- Email: admin@meassociation.org.ukfeedback@meassociation.org.uk
- Website: The ME Association
The 25% Support Group
- We are a charity supporting those with severe ME.
- We offer a dedicated advocacy service as well as emotional support and information on severe ME.
- Email: enquiry@25megroup.org
- Website: The 25% Support Group
#MEAction Scotland
- 'MEAction
- Website: MEAction
Tymes Trust
- Website: Tymes Trust
Local M.E. Support groups
Organisation / Contact details
ME and You Aberdeen
Borders ME Group
- Website: Borders ME Group
Cumbernauld and District M.E. Support Group (Sam & M.E.)
Dumfries & Galloway M.E. and Fibromyalgia Network
- Email: admin@dgmefm.org.uk
- Website: Dumfries & Galloway ME and Fibromyalgia Network
Edinburgh M.E. Self-Help Group (Edmesh)
- Email: membership@edmesh.org.uk
- Website: Edinburgh ME Self-Help Group
Falkirk M.E. Self Help Group
Fife M.E. Support group
Glasgow M.E./Chronic Fatigue Syndrome Support Group
M.E. Lochaber
- Email: m.e.lochaber@gmail.com
- Website: ME Lochaber
Perth and Kinross ME group
Other useful organisations
Organisation / Service or Purpose / Contact details
Carers Scotland
- Working to make life easier for carers
- Phone: 0808 808 7777
- Website: We're here to make life better for carers - Carers UK
Carers Trust
- We give carers a voice and highlight their issues to the public.
- Website: Homepage - Carers Trust
Enquire
- Information about additional support at school for learning.
- Website: Enquire
Health and Social Care Alliance Scotland
- The national third sector intermediary for a range of health and social care organisations.
- Email: info@alliance-scotland.org.uk
- Website: Health and Social Care Alliance Scotland
- Phone: 0141 404 0231
Neurological Alliance of Scotland
- An umbrella body of organisations that represent people with a neurological condition and those who support them.
- Website: Neurological Alliance of Scotland (scottishneurological.org.uk)
- Email: Info@scottishneurological.org.uk
Physios for M.E.
- We are a group of physiotherapists in the United Kingdom with a special interest in Myalgic Encephalomyelitis ("ME")
- Website: Physios for ME
Self Directed Support Scotland
- Information and resources on Self Directed Support for social care. Signposting to local advice on Self Directed Support and resources.
- Website: Self Directed Support Scotland (SDSS) - Self Directed Support Scotland (sdsscotland.org.uk)
Contact
Email: Clinical_Priorities@gov.scot
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