$1,200,000 is required over 2 years for the development of national clinical guidelines for ME/CFS to increase safety and quality of care and establish shared care

It is a matter of urgency for Australia to update its clinical guidelines for ME/CFS, to ensure 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 As ME/CFS research continues to evolve, clinical guidelines quickly become outdated.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.

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 updated.[1]

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 time.[2] Australia’s current guidelines use the Fukuda (1994) criteria,[3] developed by the US Centers for Disease Control and Prevention. These criteria are no longer recommended, as they do not include post-exertional malaise as a mandatory criterion for diagnosis, despite it being a core feature of the disease.[4] The CDC itself no longer recommends these diagnostic criteria.[5]

Australia’s current guidelines focus on physical rehabilitation and encourage ME/CFS patients to undertake exercise, while discouraging excessive rest and activity avoidance. They suggest patient concerns that physical activity may be harmful are “unwarranted”, despite current consensus that physical activity triggers PEM in ME/CFS patients.[6] The guidelines also falsely claim graded exercise programs have been shown to be effective treatment 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 recommended.[7],[8],[9]

The harmful nature of Graded Exercise Therapy and Cognitive Behaviour Therapy

In the past, graded exercise therapy (GET) and cognitive behaviour therapy (CBT) have been commonly recommended treatments for ME/CFS. GET assumes the symptoms of ME/CFS are largely the result of physical deconditioning, due to lack of activity. GET has often been combined with cognitive behaviour therapy (CBT) on the assumption that activity avoidance in people with ME/CFS was fear-based, and the treatment focussed on challenging these presumed fears and encouraging increased activity.

It was assumed GET and CBT treatment would reverse both activity avoidance and deconditioning. This would lead to a reduction in symptoms and even full recovery. However, biomedical research into ME/CFS does not support the deconditioning hypothesis of ME/CFS and GET and CBT studies do not show the high rates of recovery and improvement which would be predicted by the deconditioning hypothesis.

Mistakes of the past managing people with ME/CFS may occur again in the management of people with Long COVID. Clinicians may prescribe graded exercise therapy to assist recovery from Long COVID. However, just as evidence suggests that graded exercise therapy may accentuate post-exertional malaise in ME/CFS[10],[11],[12], the same effect has been observed in post-acute COVID-19 patient narratives.[13],[14],[15] For this reason, graded exercise therapy should not be prescribed for management of Long COVID.[16]

Donate now to ensure no ME/CFS patient faces this disease alone

[1] Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Advisory Committee. ‘Report to the NHMRC Chief Executive Officer’ Australian Government, (2019).

[2] Working group of The Royal Australasian College of Physicians (RACP). ‘Clinical practice guideline: Chronic Fatigue Syndrome’ The Medical Journal of Australia, 176:9 (2002).

[3] 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.

[4] ME/CFS Advisory Committee. ‘Report to the NHMRC’.

[5] Centers for Disease Control and Prevention. ‘CDC: IOM 2015 Diagnostic Criteria’ (2015). Available at: https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html.

[6] L. Bateman, et al. ‘Myalgic encephalomyelitis/chronic fatigue syndrome: Essentials of diagnosis and management’. Mayo Clinic Proceedings, 96:11 (2021).

[7] Bateman. ‘Myalgic encephalomyelitis/chronic fatigue syndrome: Essentials’.

[8] Centers for Disease Control and Prevention. ‘Clinical care for patients with ME/CFS’ (2021). Available at: https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/index.html.

[9] National Institute for Health and Care Excellence. ‘Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management’ (2021). Available at: https://www.nice.org.uk/guidance/ng206.

[10] T. Kindlon. ‘Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’ Bull IACFS ME, 19 (2011).

[11] D. Kim, et al. ‘Systematic review of randomized controlled trials for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)’ Journal of Translational Medicine, 18 (2020).

[12] L. Larun, et al. ‘Exercise therapy for chronic fatigue syndrome’ Cochrane Database of Systematic Reviews, 2021 (2019).

[13] H. Salisbury. ‘Helen Salisbury: When will we be well again?’ The BMJ, 369 (2020).

[14] M. Peel. ‘What can we tell patients with prolonged covid-19’ The BMJ, 370 (2020).

[15] R. Perrin, et al. ‘Into the looking glass: Post-viral syndrome post COVID-19’ Medical Hypotheses, 144 (2020).

[16] Decary et al, ‘Humility and Acceptance: Working Within Our Limits with Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’ Journal of Orthopaedic & Sports Physical Therapy, 51:5 (2021).