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Publication - Advice and guidance

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS): good practice statement

Published
28 February 2023
Directorate
Healthcare Quality and Improvement Directorate, +5 more … Chief Medical Officer Directorate, Children and Families Directorate, Population Health Directorate, Primary Care Directorate, Social Care and National Care Service Development
Part of
Health and social care
ISBN
9781805251484

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.

View supporting documents Supporting documents

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)

AskSARA

Centre for Inclusive Living Edinburgh

Centre for Inclusive Living Glasgow

Citizens Advice Bureau

Department for Work and Pensions (DWP)

Disability Rights UK

Jobcentre Plus

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

The ME Association

The 25% Support Group

#MEAction Scotland

Tymes Trust

Local M.E. Support groups

Organisation / Contact details

ME and You Aberdeen

Borders ME Group

Cumbernauld and District M.E. Support Group (Sam & M.E.)

Dumfries & Galloway M.E. and Fibromyalgia Network

Edinburgh M.E. Self-Help Group (Edmesh)

Falkirk M.E. Self Help Group

Fife M.E. Support group

Glasgow M.E./Chronic Fatigue Syndrome Support Group

M.E. Lochaber

Perth and Kinross ME group

Other useful organisations

Organisation / Service or Purpose / Contact details

Carers Scotland

Carers Trust

Enquire

  • Information about additional support at school for learning.
  • Website: Enquire

Health and Social Care Alliance Scotland

Neurological Alliance of Scotland

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

Contact

Email: Clinical_Priorities@gov.scot

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