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

Footnotes

1. The most recent Healthcare Needs Assessment is available here: ME-CFS healthcare needs assessment: Briefing.

2. Sharpe MC, Archard LC, Banatvala JE et al. Chronic fatigue syndrome: guidelines for research. Journal of the Royal Society of Medicine 1991;84:118-21.

3. Fukuda K, Strauss S, Hickie J et al. US Centers for Disease Control and Prevention (CDC) 1994. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Annals of Internal Medicine 1994;121:943-9.

4. Carruthers BM, Jain AK, De Merleier KL et al. Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. (Canadian Consensus Document). Journal of Chronic Fatigue Syndrome 2003;11(1):7-116. See: 1 Guidance on the management of CFS/M.E. Action for M.E., 2002.

5. National Institute for Health and Clinical Excellence (NICE), London, 2007. Diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) in adults and children.

6. Hoad A, Spickett G, Elliott G, Newton J. Postural orthostatic tachycardia syndrome is an under-recognised condition in chronic fatigue syndrome. Quarterly Journal of Medicine QJM 2008;101:961-5.

7. Lunn MPT, Hughes RAC, Wiffen PJ. Duloxetine for treating neuropathy or chronic pain (Review). Cochrane Database of Systematic Reviews 2010, Issue 3. Art. No.: CD007115.

8. Moore RA, Straube S, Wiffen PJ, Derry S, McQuay HJ. Pregabalin for acute and chronic pain in adults (Review). Cochrane Database of Systematic Reviews 2010, Issue 1. Art. No.: CD007076.

9. National Institute for Health and Clinical Excellence (NICE), London, 2010. Neuropathic pain. The pharmacological management of neuropathic pain in adults in non-specialist settings.

10. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial

11. Bagnall AB, Hempel S, Chambers D et al. The treatment and management of chronic fatigue syndrome/myalgic encephalomyelitis in adults and children. Centre for Reviews and Dissemination, University of York, 2007.

12. Larun L, McGuire H, Edmonds M et al. Exercise therapy for chronic fatigue syndrome (Review). Cochrane Database of Systematic Reviews 2004, Issue 3. Art. No.: CD003200. Updated by Edmonds M, McGuire H, Price JR, Cochrane Library 2010, Issue 6.

13. Please see update under 4.5 – NICE 2021 guideline does not recommend GET as an effective therapy for ME-CFS

14. Please see update under 4.5 – NICE 2021 guideline does not recommend GET as an effective therapy for ME-CFS

15. This evidence review dates from 2010 and should be interpreted with caution.

16. Bagnall AB, Hempel S, Chambers D et al. The treatment and management of chronic fatigue syndrome/myalgic encephalomyelitis in adults and children. Centre for Reviews and Dissemination, University of York, 2007.

17. Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults (Review). Cochrane Database of Systematic Reviews 2008, Issue 3. Art. No.: CD001027.

18. Please see updates at sections 4.5 and 4.6 – NICE 2021 guideline does not recommend GET as an effective therapy for ME-CFS and recommends that CBT should only be offered to support people to manage their symptoms, improve their functioning and reduce distress.

19. Busch AJ, Barber KA, Overend TJ et al. Exercise for treating fibromyalgia syndrome (Review). Cochrane Database of Systematic Reviews 2007, Issue 4. Art. No.: CD003786.

20. See SIGN 50: a guideline developer's handbook, available here: SIGN 50: a guideline developer's handbook

21. Please see update under 4.5 – NICE 2021 guideline does not recommend GET as an effective therapy for ME-CFS

22. The most recent Healthcare Needs Assessment is available here: ME-CFS healthcare needs assessment: Briefing

23. General Standards for Neurological Care & Support published 2019

24. This link is no longer available. Please refer to RCPCH briefing on the NICE guideline on ME/CFS.

25. This guideline has been superseded by the NICE 2021 update. Please refer to RCPCH briefing on the NICE guideline on ME/CFS.

26. This guideline has been superseded by the NICE 2021 update. Please refer to RCPCH briefing on the NICE guideline on ME/CFS.

27. This guideline has been superseded by the NICE 2021 update. Please refer to RCPCH briefing on the NICE guideline on ME/CFS.

28. Please see updates at sections 4.5 and 4.6 – NICE 2021 guideline does not recommend GET as an effective therapy for ME-CFS and recommends that CBT should only be offered to support people to manage their symptoms, improve their functioning and reduce distress.

29. This guideline has been superseded by the NICE 2021 update. Please refer to RCPCH briefing on the NICE guideline on ME/CFS

30. This guideline has been superseded by the NICE 2021 update. Please refer to RCPCH briefing on the NICE guideline on ME/CFS.

31. Crawley E, Sterne JAC. Association between school absence and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy. Archives of Disease in Childhood 2009;94:752-6.

32. Evidence based guideline for the management of CFS/ME in children and young people. Royal College of Paediatrics and Child Health, London, 2004.

33. Health Care Needs Assessment of Services for people living with ME-CFS. Scottish Public Health Network (ScotPHN) 2010.

34. The Association of Young People with ME has now merged with Action for ME.

35. This guideline has been superseded by the NICE 2021 update. Please refer to RCPCH briefing on the NICE guideline on ME/CFS.

36. This guideline has been superseded by the NICE 2021 update. Please refer to RCPCH briefing on the NICE guideline on ME/CFS.

37. Please refer to Getting it right for every child

38. Please see NICE 2021 update on severity scale for adults, above.

39. This guideline has been superseded by the NICE 2021 update. Please refer to RCPCH briefing on the NICE guideline on ME/CFS.

40. The Carers (Scotland) Act 2016 came in to effect in April 2018 to ensure better and more consistent support for carers and young carers.

41. The Scottish Government is currently engaging with carer representatives and other stakeholders to develop a National Carers Strategy during 2022.

42. In 2019 Scottish Government published a Neurological Care & Support Action Plan 2020-25.

43. This research review dates from 2010 and should be interpreted with caution.

44. Sharpe MC, Archard LC, Banatvala JE et al. Chronic fatigue syndrome: guidelines for research. Journal of the Royal Society of Medicine 1991;84:118-21

45. Fukuda K, Strauss S, Hickie J et al. US Centers for Disease Control and Prevention (CDC) 1994. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Annals of Internal Medicine 1994;121:943-9.

46. Carruthers BM, Jain AK, De Merleier KL et al. Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. (Canadian Consensus Document). Journal of Chronic Fatigue Syndrome 2003;11(1):7-116. See: 1 Guidance on the management of CFS/M.E. Action for M.E., 2002.

47. The Guide to Getting it right for every child (GIRFEC). The Scottish Government and COSLA. Edinburgh, 2008. See also: Implementing Getting it right for every child: summary for practitioners.

48. The Group on Scientific Research into Myalgic Encephalomyelitis (M.E.) The Gibson Report. Inquiry into the status of CFS/M.E. and research into causes and treatment. UK Parliament, London, 2006.

49. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial

50. This guideline has been superseded by the NICE 2021 update. Please refer to RCPCH briefing on the NICE guideline on ME/CFS.

51. Archived content is available MRC CFS/ME Research Workshop and Prioritisation Meeting (2009)

52. The CFSRF is no longer an active organisation.

53. Please see Ramsay Research Fund | The ME Association for further information.

54. This legislation has been superseded by the Equality Act 2010 – for guidance please refer to Equality Act 2010: guidance

55. Number no longer in use – Action for ME Advocacy and Support Service now contactable on 0117 927 9551

56. The Disability Alliance website is no longer available

57. Further information is available at Social Security Scotland

58. The DialUK website is no longer current.

59. As at 2023 subscription fee is £19.95 per year.

60. NHS24 contact number is now 111 and website is available at NHS24.

61. The Care Information Scotland helpline is now available on 0800 011 3200 and website is available at Care Information Scotland.

62. A new NICE guideline was issued in 2021. SIGN guidelines continue to have primacy in Scotland, with other guidelines – such as NICE – being used when there is no current SIGN guideline available, as is the case with ME/CFS.

63. Scottish Government latest GIRFEC updates are available at Getting it right for every child.

64. Action for ME website is now available.

65. Please see updated NICE 2021 diagnostic criteria under section 3.2.