Last reviewed: 24 Dec 2021
Last updated: 19 Jan 2022
19 Jan 2022

Updated UK guidance on myalgic encephalomyelitis/chronic fatigue syndrome

The UK National Institute for Health and Care Excellence (NICE) has updated its guidance on the diagnosis and management of encephalomyelitis/chronic fatigue syndrome (ME/CFS). Recommendations include the following:

  • Improve awareness on when to suspect ME/CFS so people are diagnosed earlier

  • Symptom management for people as soon as ME/CFS is suspected

  • Energy management as one of the most important tools that people with ME/CFS have to support them in living with the symptoms of ME/CFS

  • Reinforces that there is no therapy based on physical activity or exercise that is effective as a cure for ME/CFS

  • Personalised sleep management advice

See Diagnosis: approach

See Management: approach

Original source of update

Summary

Definition

History and exam

Key diagnostic factors

  • persistent disabling fatigue
  • post-exertional malaise/fatigue (PEM), exertional exhaustion
  • short-term memory and/or concentration impairment
  • sore throat
  • generalised arthralgia without inflammation
  • headache/migraine with onset after the fatigue
  • unrefreshing sleep
  • orthostatic intolerance
  • diffuse muscular, tendon, fascial, and other pain
  • tender lymph nodes

Other diagnostic factors

  • age of onset (adolescence and 30 to 50 years)
  • flu-like symptoms (malaise, myalgia, feverishness)
  • dizziness/lightheadedness
  • anxiety, affective disorder, atypical depression
  • sensations of altered temperature
  • exertion-induced cognitive dysfunction (affecting working memory, not persistent)
  • irritant sensitivities
  • feverishness

Risk factors

  • female sex
  • Epstein-Barr infection in adolescents
  • coronavirus disease 2019 (COVID-19)
  • positive family history of ME/CFS
  • genetic factors
  • specific infectious diseases in adults
  • autoimmunity
  • gut microbiome
  • psychological factors
  • major depressive disorder
  • ancestry
  • joint hypermobility/laxity

Diagnostic investigations

1st investigations to order

  • DePaul symptom questionnaire
  • FBC with WBC differential
  • erythrocyte sedimentation rate
  • CRP
  • comprehensive metabolic panel
  • thyroid-stimulating hormone
  • antinuclear antibody (ANA), rheumatoid factor
  • HIV antibody test

Investigations to consider

  • heads-up tilt-table test if symptomatic orthostatic intolerance
  • serum ferritin
  • HbA1c
  • urine toxicology screen
  • antibody tests for gluten sensitivity/coeliac disease

Emerging tests

  • 2-day cardiopulmonary exercise testing

Treatment algorithm

Contributors

Authors

James N. Baraniuk, MD
James N. Baraniuk

Professor

Division of Rheumatology, Immunology, and Allergy

Georgetown University

Washington

DC

Disclosures

JNB has received grants from the National Institute of Neurological Diseases and Stroke and the Department of Defense Congressionally Directed Medical Research Program. He has received travel reimbursement from the Iceland Medical Society for travel to the 2020 Iceland Medical Society meeting to give a presentation on CFS Veterans Affairs Research Advisory Committee for Gulf War Illness. JNB has purchased stocks for retirement plans that have no relationship to CFS or this topic.

Acknowledgements

Dr James N. Baraniuk would like to gratefully acknowledge Dr Craig N. Sawchuk and Dr Dedra Buchwald, previous contributors to this topic.

Disclosures

CNS declares that he has no competing interests. DB is an author of a number of references cited in this topic. This topic was reviewed in 2018 by a patient with ME/CFS, and their feedback was considered as part of the topic update. The patient peer reviewer does not wish to be named.

Peer reviewers

Alastair Santhouse, MA (Cantab), MB, B.Chir, FRCP, FRCPsych

Consultant Psychiatrist in Psychological Medicine

South London and Maudsley NHS Foundation Trust

Denmark Hill

London

UK

Disclosures

AS declares that he was a guideline development group member for NICE ME/CFS 2007 guidelines CG53.

Ben Z. Katz, MD

Professor of Pediatrics

Division of Infectious Diseases

Northwestern University Feinberg School of Medicine

Attending Physician

Ann & Robert H. Lurie Children’s Hospital of Chicago

Chicago

IL

Disclosures

BZK declares that he has no competing interests.

Indre Bileviciute-Ljungar, MD, PhD

Associated Professor in Rehabilitation Medicine

Department of Clinical Sciences

Danderyd University Hospital

Karolinska Institutet

Stockholm

Sweden

Disclosures

IB-L declares that he has no competing interests.

Tarek Gaber, MB, BCh, MSc, FRCP

Consultant Physician in Rehabilitation Medicine

Wrightington, Wigan and Leigh NHS Trust

Leigh Infirmary

Leigh

UK

Disclosures

TG declares that he has no competing interests.

Malcolm Hooper, PhD, B Pharm, MRIC, C Chem

ME patient advocate

Emeritus Professor of Medicinal Chemistry

University of Sunderland

Sunderland

UK

Disclosures

MH has lectured on ME and made national and international presentations to groups concerned with ME in Denmark, Sweden, Australia, US, and UK. He has acted as a witness for the GMC (UK) and received payment for this (travel and subsistence). He has also received payment from a family he supported in legal proceedings relating to vaccine damage, after the case was settled in their favour. He is a founder member of the Academy Of Nutritional Medicine, which has a special interest in Lyme disease. Their guidelines mention ME/CFS several times. He has given their keynote address for 3 years. He is the author of the paper Hooper M. Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research. J Clin Pathol. 2007;60:466-71. He is a member of the trustees for the John Richardson Research Group and the ME research group. He is also a trustee of European Services for People with Autism (ESPA) and a member of ESPA-Research, which is developing techniques to help with this condition. All of this work is voluntary.

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