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

8. Bibliography

[Please note: where website addresses are listed below they were accessed in their full http://www format as at November 2022]

Outline for development of services for CFS/ME in Scotland. Report of the Scottish Short Life Working Group. Scottish Executive Health Department, Edinburgh, 2002.

Report of the CFS/ME Working Group. Report to the Chief Medical Officer of an Independent Working Group. Department of Health, London, 2002.

Based on: Gallacher AM, Thomas JM, Hamilton WT, White PD. Incidence of fatigue symptoms and diagnoses presenting in UK primary care from 1990 to 2001. Journal of the Royal Society of Medicine 2004;97:571-5.

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.

[Please note:^[62] The current advice from NHS Quality Improvement Scotland on NICE guidelines is that these have no formal status in Scotland, as SIGN has responsibility to produce clinical guidelines for NHS Scotland. Guidelines help healthcare professionals in their work, but they do not replace their knowledge and skills].

ME diagnosis delay harms health. A report from the ME Alliance, 2005.

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

Santhouse AM, Hotopf M, David AS. Chronic fatigue syndrome – defeatism among clinicians is undermining evidence that it can be treated. (Editorial). British Medical Journal 2010;340:c378.

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.

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.

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.

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.

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. DOI:10.1002/14651858.CD007115.pub2.

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. DOI:10.1002/14651858.CD007076.pub2.

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

Scottish Intercollegiate Guidelines Network (SIGN 107), 2008. Diagnosis and management of headache in adults. A national clinical guideline.

Acupuncture for tension-type headaches and migraine. Drug and Therapeutics Bulletin 2010;48(6):62-5.

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.

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. DOI: 10.1002/14651858.CD003200.pub2. Updated by Edmonds M, McGuire H, Price JR, Cochrane Library 2010, Issue 6.

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. DOI: 10.1002/14651858.CD003786.pub2.

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. DOI: 10.1002/14651858.CD001027.pub2.

deLange FP, Koers A, Kalkman JS et al. Increase in prefrontal cortical volume following cognitive behavioural therapy in patients with chronic fatigue syndrome. Brain 2008;131:2172-80.

M.E. 2008: what progress? Action for M.E., 2008, published online at:

Managing my M.E. What people with ME/CFS and their carers want from the UK's health and social services. ME Association, 2010

Evidence levels for interventions. The grading of level of evidence in this guidance has been made in accordance with the SIGN Guidelines Approach. In keeping with recent SIGN developments due weight is also given to people's experience of living with the condition.

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

NHS QIS Clinical Standards for Neurological Health Services. NHS QIS, Edinburgh, 2009.

Bombardier CH, Buchwald D. Outcome and prognosis of patients with chronic fatigue v chronic fatigue syndrome. Archives of Internal Medicine 1995;155:2105-10.

Joyce J, Hotopf M, Wessely S. The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review. Quarterly Journal of Medicine QJM 1997;90:223-33.

Davies S, Crawley E. Chronic fatigue syndrome in children aged 11 years and younger. Archives of Disease in Childhood 2008;93:419-21.

Evidence based guideline for the management of CFS/ME in children and young people. Royal College of Paediatrics and Child Health, London, 2004. guidelines. [Note: A large number of references have been cited in this guideline and should be consulted to augment the information provided in Section 4].

Bell DS, Jordan K, Robinson M. Thirteen-year follow up of children and adolescents with chronic fatigue syndrome. Pediatrics 2001;107:994-8.

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. The GIRFEC website is regularly updated.^[63]

Jason LA, Jordan KA, Miike T et al. A pediatric case definition for ME and CFS. Journal of Chronic Fatigue Syndrome 2006;13:1-44.

Shepherd C, Chudhuri A. CFS/ME/PVFS. An exploration of the key clinical issues. ME Association, October 2009.

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.

Dowsett EG, Colby J. Long-term sickness absence due to ME-CFS in UK schools: an epidemiological study with medical and educational implications. Journal of Chronic Fatigue Syndrome 1997;3:29-42.

Jones R, Hoare P, Elton R, Dunhill Z, Sharpe M. Frequent medical absences in secondary school students – survey and case-control study. Archives of Disease in Childhood 2009;94:763-7.

The diagnosis and management of (CFS/ME) – child protection guidance for professionals working in health, social services and education. AYME and Action for M.E., 2006^[64]

Caring Together – The Carers Strategy for Scotland 2010-15. COSLA and the Scottish Government, Edinburgh 2010.

Improving health and wellbeing of people with long term conditions in Scotland: a national action plan. (Includes covering letter: CEL 23 (2009)). Scottish Government Health Directorates, Edinburgh, 2009.

The Healthcare Quality Strategy for NHS Scotland – putting people at the heart of our NHS. Scottish Government Health Directorates, Edinburgh, 2010.

Jason LA, Corradi K, Torrs-Harding S et al. Chronic fatigue syndrome: the need for subtypes. Neuropsychology Review 2005;15:29-58.

Newton JL, Okonkwo O, Sutcliffe K et al. Symptoms of autonomic dysfunction in chronic fatigue syndrome. Quarterly Journal of Medicine QJM 2007;100:519-26.

Gow JW, Hagan S, Pawel H et al. A gene signature for post-infectious chronic fatigue syndrome. BMC Medical Genomics 2009, 2:38.

Zhang L, Gough J, Christmas D et al. Microbial infections in eight genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis. Journal of Clinical Pathology 2010;63:156-64.

Jones DE, Hollingsworth KG, Taylor R et al. Abnormalities in pH handling by peripheral muscle and potential regulation by the autonomic nervous system in chronic fatigue syndrome. Journal of Internal Medicine 2010;267:394-401.

Newton JL, Sheth A, Shin J et al. Lower ambulatory blood pressure in chronic fatigue syndrome. Psychosomatic Medicine 2009;71:361-5.

Robinson M, Gray SR, Watson MS et al. Plasma IL-6, its soluble receptors and F2-isoprostanes at rest and during exercise in chronic fatigue syndrome. Scandinavian Journal of Medicine & Science in Sports 2010;20:282-90.

Kennedy G, Spence VA, McLaren M et al. Oxidative stress levels are raised in chronic fatigue syndrome and are associated with clinical symptoms. Free Radical Biology & Medicine 2005;39:584-9.

Lombardi VC, Ruscetti FW, Das Gupta J et al. Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science 2009;326:585-9.

Erlwein O, Kaye S, McClure MO et al. Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome. PLoS One 2010;5:e8519.

Groom HCT, Boucherit VC, Makinson K, et al. Absence of XMRV in UK patients with chronic fatigue syndrome. Retrovirology 2010;7:10.

Van Kuppeveld FJM, de Jong AS, Lanke KH et al. Prevalence of XMRV in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort. British Medical Journal 2010;340:c1018.

Harvey SB, Wessely S. Chronic fatigue syndrome: identifying zebras amongst the horses. BMC Medicine 2009, 7:58

Maes M, Twisk FNM. Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways BMC Medicine 2010, 8:35

Maes M. Inflammatory and oxidative and nitrosative stress pathways underpinning chronic fatigue. Current Opinion in Psychiatry 2009;22:75-83.

Komaroff AL. The biology of chronic fatigue syndrome. American Journal of Medicine 2000;108:169-71.

Jason LA, Fennell PA, Taylor RR (eds). Handbook of Chronic Fatigue Syndrome. Wiley, New York, 2003.

Hempel S, Chambers D, Bagnall A-M, Forbes C. Risk factors for chronic fatigue syndrome/myalgic encephalomyelitis: a systematic scoping review of multiple predictor studies. Psychological Medicine 2008;38:915-26.

Cross Party Group on ME. Legacy Report. Scottish Parliament, Edinburgh, 2007.

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.

Wearden AJ, Dowrick C, Chew-Graham A et al. Nurse led, home based self help treatment for patients in primary care with chronic fatigue syndrome: randomised controlled trial (FINE). British Medical Journal 2010;340:c1777. (see also BMJ rapid responses:

Chalder T, Berelowitz, G, Pawlikowska T et al. Development of a fatigue scale. Journal of Psychosomatic Research 1993;37:473-83.

Van Houdenhove B, Pae CU, Luyten P. Chronic fatigue syndrome: is there a role for non-antidepressant pharmacotherapy? Expert Opinion on Pharmacotherapy 2010;11:215-23.

The GK, Bleijenberg G, Buitelaar K et al. The effect of ondansetron, a 5-HT3 receptor antagonist in chronic fatigue syndrome: a randomised controlled trial. Journal of Clinical Psychiatry 2010;71:528-33.

Sutcliffe K, Gray J, Tan MP et al. Home orthostatic training in chronic fatigue syndrome – a randomised, placebo controlled trial. European Journal of Clinical Investigation 2010;40:18-24.

White PD, Sharpe MC, Chalder T et al on behalf of the PACE trial group. Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy and graded exercise as supplements to standardised specialist medical care versus standardised medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy. BMC Neurology 2007, 7:6

Haanpää ML, Misha-Miroslav B, Bennett MI et al. Assessment of neuropathic pain in primary care. The American Journal of Medicine 2009;122:S13-S21.

Berkovitz S, Ambler G, Jenkins M et al. Serum 25-hydroxy vitamin D levels in chronic fatigue syndrome: a retrospective survey. International Journal for Vitamin & Nutrition Research 2009;79:250-4.

Holick MF. The D-lemma: To screen or not to screen for 25-hydroxyvitamin D concentrations. (Editorial). Clinical Chemistry 2010;56:729-31.

Belch JF et al. Vitamin D and vascular health of Chronic Fatigue Syndrome Patients

Drachler MdL, Leite JCdC, Hooper L et al. The expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review. BMC Public Health 2009, 9:458.

Chew-Graham C, Dowrick C, Wearden A et al.Making the diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalitis in primary care. BMC Family Practice 2010, 11:16.

Van Hoof E. The doctor patient relationship in chronic fatigue syndrome: survey of patient perspectives.Quality in Primary Care 2009;17:263-70.

Chew-Graham C, Dixon R, Shaw JW et al. Practice nurses' views of their role in the management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: a qualitative study. BMC Nursing 2009, 8:2.

Chambers D, Bagnall A-M, Hempel S et al. Interventions for he treatment, management and rehabilitation of patients with chronic fatigue syndrome/myalgic encephalomyelitis: an updated systematic review. Journal of the Royal Society of Medicine 2006;99:506-20.

Comber AM, Simpson L. Believe in ME: patient experiences of accessing and using services in Lothian to treat ME-CFS/PVFS. A patient involvement initiative. Edinburgh and South Central Community Health Partnerships, NHS Lothian, 2009.