It is a matter of urgency for Australia to update its clinical guidelines for ME/CFS, to ensure that Australian ME/CFS patients have access to the best possible care, based on current understanding of the condition and latest evidence.
As ME/CFS research continues to evolve, clinical guidelines quickly become outdated. Emerge Australia believes that new ME/CFS guidelines should be living documents which are regularly updated by a standing committee of clinicians, researchers, patients and carers, as new evidence comes to light.
Emerge Australia supports further research into both the underlying pathophysiology of ME/CFS and treatments which address these underlying abnormalities.
Australia’s clinical guidelines for ME/CFS have not been updated since 2002. These guidelines do not reflect the current understanding of ME/CFS nor best practice for clinical management of the condition.
Outdated clinical guidelines puts Australia out of step with international best practice and denies Australian ME/CFS patients access to the best possible care.
Australia’s current clinical guidelines were published in 2002, by a working group under the auspices of the Royal Australia College of Physicians and reflect standard clinical management of ME/CFS at the time1. However, it should be noted that even at the time of publication, these guidelines were opposed by Australian ME/CFS patient groups who were concerned about the risk of harm from the recommendations of graded exercise therapy and cognitive behaviour therapy as frontline treatments for the condition2,3.
The current clinical guidelines conceptualise the condition as one which is predominantly fatigue, and do not consider ME/CFS to be a specific disease entity. This is in contrast to the now accepted definition of ME/CFS as a “serious, chronic, complex, and multisystem disease”, and of which post-exertional malaise (PEM) is considered the core feature4.
Australia’s current clinical guidelines use the Fukuda (1994) criteria5, developed by the US Centers for Disease Control and Prevention. These criteria are no longer recommended, as they do not include PEM as a mandatory criterion for diagnosis, despite it being a core feature of the condition3. The CDC itself no longer recommends these diagnostic criteria6.
The guidelines focus on physical rehabilitation and encourage ME/CFS patients to undertake exercise, while discouraging excessive rest and activity avoidance. They suggest that patient concerns that physical activity may be harmful are “unwarranted”, despite current consensus that physical activity triggers PEM in ME/CFS patients7. The guidelines also falsely claim that graded exercise programs have been shown to be effective treatments for ME/CFS, that avoiding activity in order to not trigger symptom exacerbation can become a vicious cycle of increased disability and more avoidance, and that patients’ beliefs about their condition contribute to their prognosis.
This approach to managing ME/CFS is no longer recommended7–9. Current clinical guidelines for ME/CFS put Australian clinical management of ME/CFS out of step with international best practice, and Australian ME/CFS patients at risk of harm.
In reviewing these issues, the 2019 report of NHMRC’s ME/CFS Advisory Committee recommended that Australia’s clinical guidelines for ME/CFS be updated3.
- Working group of The Royal Australasian College of Physicians (RACP). (2002). Clinical practice guideline: Chronic Fatigue Syndrome. The Medical Journal of Australia, 176(9), 17-55
- Larkins, R. G., & Molesworth, S. R. (2002). Chronic fatigue syndrome clinical practice guidelines. The Medical Journal of Australia, 177(1), 51-52
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Advisory Committee (2019). Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Advisory Committee Report to the NHMRC Chief Executive Officer.
- Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Board on the Health of Select Populations, & Institute of Medicine. (2015). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.National Academies Press (US).
- Fukuda, K., Straus, S. E., Hickie, I., Sharpe, M. C., Dobbins, J. G., Komaroff, A., & International Chronic Fatigue Syndrome Study Group. (1994). The chronic fatigue syndrome: a comprehensive approach to its definition and study. Annals of internal medicine, 121(12), 953-959.
Centers for Disease Control and Prevention (2021). CDC: IOM 2015 Diagnostic Criteria. https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html
- Bateman, L., Bested, A. C., Bonilla, H. F., Chheda, B. V., Chu, L., Curtin, J. M., … & Yellman, B. P. (2021). Myalgic encephalomyelitis/chronic fatigue syndrome: Essentials of diagnosis and management. Mayo Clinic Proceedings, 96(11), 2861-2878.
- Centers for Disease Control and Prevention. (2021, April 28). Clinical care for patients with ME/CFS. https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/index.html
- National Institute for Health and Care Excellence. (2021, October). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. . https://www.nice.org.uk/guidance/ng206