Supporting Australians with ME/CFS and long COVID: Priorities for the 2022 Federal Election

Emerge Australia’s State of the Nation report includes five priority areas for government to improve the lives of people with ME/CFS.

Read: The State of the Nation: Because people with ME/CFS matter

In the lead up to the federal election, Emerge Australia is writing to all federal parliamentarians to seek their support for these five priority areas.

If you would like to raise awareness of the needs of people with ME/CFS and ensure your voice is heard, complete two simple actions today: 

Action 1 – Write to your Federal MP or Senator in 2-minutes using our online platform

Action 2 – Sign the petition calling for increased support for people with ME/CFS 

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and debilitating disease. The degree of impairment exceeds that of other well-known diseases such as rheumatoid arthritis, multiple sclerosis and lung disease^1,2,3. Approximately 25% of people with ME/CFS are housebound or bedbound⁴.

ME/CFS currently impacts up to 250,000 Australians. This figure is expected to rise due to COVID.  For most patients, ME/CFS develops after contracting a viral or bacterial infection, and people with long COVID display symptoms which significantly overlap with (ME/CFS)⁵. Predictions forecast between 40,000 and 325,000 Australians may develop long COVID in coming months⁶.

Australia is facing a post-viral health crisis in 2022. Government must urgently act to deliver appropriate health and social care for people living with ME/CFS, and the growing numbers of people with long COVID. 

Emerge Australia needs increased funding to help the large number of people with ME/CFS, and the growing number with long COVID. There is so much more we need to do for people who live with this debilitating condition, and who have been overlooked for too long. Without increased funding, we are severely limited in our ability to deliver front line services to our patients and provide wider educational support to the Australian health and social care systems.

Ahead of the election, Emerge Australia has identified five priorities which are critical to improve health and wellbeing outcomes for people living with ME/CFS and long COVID. Further information about these priorities can be found in our State of the Nation report.

Priority One: Educate doctors about ME/CFS, its diagnosis and management

Research estimates 90% of people with ME/CFS are undiagnosed⁷. Many Australian GPs lack the knowledge and confidence to diagnose ME/CFS, and to advise on appropriate symptom management techniques once diagnosis does occur⁸. This has significant implications for patient care, and can lead to symptoms worsening over time.

In addition to updating Australia’s clinical guidelines, there is a significant need for GP education about ME/CFS, targeting those already practicing and for medical trainees in undergraduate programs. This must include the development of up-to-date, evidence-based HealthPathways to ensure GPs around Australia have direct access to information about how to support their ME/CFS and long COVID patients, and localised referrals to relevant specialists.

Priority two: Increase funding for support services for patients and families

People with ME/CFS and post-viral diseases do not routinely receive appropriate, coordinated, shared care. Further, they face barriers accessing evidence-based information and integrated non-clinical support, all of which can inhibit symptom management and recovery. It is critical that ME/CFS and long COVID patients are empowered to understand their unique needs and become partners in their own care.

GPs cannot meet all care support needs for Australian patients with ME/CFS. Optimal Care Pathways (OCP) support integrated shared care across the entire health system. An OCP for people with ME/CFS should be developed through a multi-disciplinary clinician consensus process that includes people with the disease, carers and allied health professionals. A thorough monitoring and evaluation process would similarly ensure the OCP is delivering efficient, appropriate and equitable care.

Priority Three: Allocate funds for development of Clinical Guidelines

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 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. 

The Australian guidelines use outdated diagnostic criteria⁹ and prescribe Graded Exercise Therapy (GET) despite evidence this can worsen symptoms and harm patients¹⁰. The current Australian guidelines put Australia out-of-step with international best practice; both the United Kingdom and the United States have removed GET.

Some clinicians in Australia are repeating the mistakes of the past by prescribing GET to assist recovery from long COVID. Just as evidence suggests that GET may accentuate post-exertional malaise in ME/CFS^11,12,13, the same effect has been observed in post-acute COVID-19 patient narratives^14,15,16. Australian clinicians need up-to-date, reliable guidance to support them to provide the best care for their patients.

Priority four: Invest in biomedical research into causes and treatments for ME/CFS and long COVID

The high degree of similarity between ME/CFS and long COVID offers opportunities for harmonisation, having researchers working across both conditions. There is no need to start from scratch with long COVID research. Existing findings from ME/CFS research can provide clear guidance for research into cause and treatment options. If treatments are found that help people with long COVID, these are potentially applicable for people with ME/CFS¹⁷. People with ME/CFS should be used as comparison cohorts to people with long COVID, in addition to healthy controls.

Underfunded biomedical research lacking patient codesign has contributed to the poor health and wellbeing outcomes post-viral patients experience today. It has also contributed to a mistrustful relationship between patients, researchers and clinicians. ME/CFS and Long COVD research must involve patients in codesign and recruitment to ensure research efforts are not wasted and to deliver relevant and better outcomes.

Priority five: Improve access to the NDIS and remove barriers to government support for people with ME/CFS  

Similar to the many medical practitioners who face challenges providing appropriate care due to out-of-date clinical guidelines, Centrelink and National Disability Insurance Agency assessment staff lack access to information to accurately assess clients with ME/CFS. Improving assessment accuracy is critical to reduce the number of incorrect first round assessment decisions and subsequent assessment rounds. This would improve timely access to the support people disabled by ME/CFS need, while reducing operating costs sustained through the appeals process. This could be achieved by developing tailored guidance for Centrelink and the NDIA, and by adding ME/CFS to the NDIS List B: Permanent Conditions.

In March 2020 the Federal Government provided access to a range of Medicare-subsidised services via telehealth in response to COVID-19. This decision enabled some people with ME/CFS to access essential health services for the first time in years. While some telehealth services are now permanently accessible through Medicare, it appears rebates for complex specialist consultations and longer telehealth consults will cease in June 2022. Emerge Australia urges the Federal Government to make Medicare rebates permanently available for long and short consultations for people with chronic illnesses, who are otherwise unable to attend clinics. 

Media Enquiries:  Ron Smith, Media Communications, Emerge Australia

Mobile: 0417 329 201 

References

1. C. Kingdon, et al. ‘Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls’ PharmacoEconomics– Open, 2:4 (2018).
2. L. Nacul, et al. ‘The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers’ BMC Public Health, 11 (2011).
3. M. Núñez, et al. ‘Health-related quality of life in chronic fatigue syndrome versus rheumatoid arthritis as control group’ Journal of Chronic Fatigue Syndrome, 14 (2008).
4. Committee on the Diagnostic Criteria for ME/CFS. ‘Beyond Myalgic Encephalomyelitis’.
5. T. Wong and D. Weitzer. ‘long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—A Systemic Review and Comparison of Clinical Presentation and Symptomatology.’ Medicina, 57:418 (2021); C. van Campen, P. Rowe and F. Visser. ‘Orthostatic Symptoms and Reductions in Cerebral Blood Flow in Long-Haul COVID-19 Patients: Similarities with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’ Medicina, 58 (2022); H. Davis, et al. ‘Characterizing long COVID in an international cohort: 7 months of symptoms and their impact’ EClinicalMedicine, 38:101019 (2021).
6. M. Henscher and MR Angeles ‘Potential scale of long COVID cases from the Omicron wave in Australia: Summer 2021-2022’ Institute for Health Transformation, Deakin University, Melbourne, (2021). Available at: http://iht.deakin.edu.au/wp-content/uploads/sites/153/2022/02/Long-COVID-Omicron-briefing-paper-IHT-02-2022.pdf.
7. Pheby DFH, Araja D, Berkis U, et al. ‘A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomic Working Group of the European Network on ME/CFS (EUROMENE)’ Medicina, 57:1 (2021) 7.
8. Emerge Australia. ‘Health and Wellbeing Survey 2019’, available at http://emerge.org.au/health-and-wellbeing-survey-2019.
9. Centers for Disease Control and Prevention. ‘CDC: IOM 2015 Diagnostic Criteria’ (2015). Available at: http://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html.
10. L. Bateman, et al. ‘Myalgic encephalomyelitis/chronic fatigue syndrome: Essentials of diagnosis and management’. Mayo Clinic Proceedings, 96:11 (2021).
11. 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).
12. D. Kim, et al. ‘Systematic review of randomized controlled trials for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)’ Journal of Translational Medicine, 18 (2020).
13. L. Larun, et al. ‘Exercise therapy for chronic fatigue syndrome’ Cochrane Database of Systematic Reviews, 2021 (2019).
14. H. Salisbury. ‘Helen Salisbury: When will we be well again?’ The BMJ, 369 (2020).
15. M. Peel. ‘What can we tell patients with prolonged covid-19’ The BMJ, 370 (2020).
16. R. Perrin, et al. ‘Into the looking glass: Post-viral syndrome post COVID-19’ Medical Hypotheses, 144 (2020).
17. Wong and Weitzer. ‘long COVID and Myalgic Encephalomyelitis’.