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Where do we go from here?

Australia’s outdated clinical guidelines must be updated to reflect internationally agreed safe and best practice care for people with ME/CFS

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 disease, and in line with the 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As ME/CFS research continues to evolve, clinical guidelines quickly become outdated.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.

It is vitally important that up-to-date national guidelines are developed that reflect the current knowledge base for ME/CFS and have the capacity to incorporate emerging evidence as and when it is published.

‘Living’ guidelines ensure that people with ME/CFS can benefit as soon as possible from advances in diagnosis and treatment. It is also important that these ‘living’ guidelines are contextualised to the Australian health and social care systems to maximise the implement ability and uptake of the guidance.

We seek to develop national, evidence-based, ‘living’ clinical practice guidelines to guide the care of people with ME/CFS. The last Australian Guidelines for ME/CFS were published in 2002. NICE (UK) published guidelines on the diagnosis and management of ME/CFS in October 2021. As captured in the UK guidelines, there have been significant developments in the understanding of ME/CFS and the most appropriate ways to assess, diagnose, treat, and manage the condition.

Recognition of the similarities between Long COVID and ME/CFS is also likely to lead to a significant increase in new evidence to support appropriate care of people with post infection disease

The National Disability Insurance Scheme (NDIS) aims to give people with disabilities (and their carers) choice and control over the services and support they receive. But, many people living with ME/CFS face significant challenges gaining access to the scheme and receiving adequate funding.

Anecdotal evidence suggests many people with ME/CFS are rejected from the NDIS and/or Disability Support Pension (DSP) because their condition was considered temporary and treatable. However, many gain access on appeal. This apparent pattern of rejection followed by a successful appeal suggests that ME/CFS is poorly understood by assessors. 

Improving assessment accuracy is critical to reduce the number of incorrect first round assessment decisions and subsequent assessment rounds.

Improving accuracy would improve timely access to the support people disabled by ME/CFS need, while reducing operating costs sustained through the appeals process.

In our recently released report State of the Nation: Because people with ME/CFS matterEmerge Australia recommends the National Disability Insurance Agency (NDIA) and Centrelink implement three key actions to improve assessment accuracy, detailed below.

  1. Develop appropriate ME/CFS assessment guidelines for NDIS and Centrelink 

In their 2019 report, the committee advising the NHMRC summarised advocacy submissions made to the NDIA about ME/CFS. Proposed recommendations advocated for recognition of ME/CFS as a serious, debilitating condition, for ME/CFS to be listed on the NDIS under list B: neurological disorders, and for collaboration with clinical experts and the ME/CFS community to develop assessment guidelines to support assessors in their role. Just as many medical practitioners face challenges providing appropriate care to their patients due to out-of-date clinical guidelines. NDIA assessment staff similarly lack access to information to accurately assess NDIS clients with ME/CFS.

Tailored guidelines should be developed to provide assessors with accurate information about the fluctuating nature and permanency of ME/CFS for most patients. Guidance would also help build understanding of the disabling nature of symptoms and the delayed response nature of post-exertional malaise. Emerge Australia would welcome the opportunity to collaborate on the development of such guidelines with the National Disability Insurance Agency (NDIA), Centrelink, the ME/CFS community and clinical experts.

  1. Recognise ME/CFS as a neurological condition under List B

Many disabling conditions are specifically named under List A or List B of the NDIS operational guidelines to provide guidance to assessors. At present, the NDIS operational guidelines do not include any specific reference to ME/CFS. It is likely the exclusion of ME/CFS from operational guidelines increases the probability of an inaccurate initial assessment.

In their report to the NHMRC, the Committee recommended ME/CFS is included on List B under neurological disorders. This is in line with the World Health Organization’s classification of ME/CFS as a neurological disorder. List B pertains to permanent conditions for which functional capacity are variable and further assessment of functional capacity is generally required.

  1. Utilise ‘Link’ workers to support patients to navigate our health and social care systems including the NDIS and DSP

The United Kingdom’s National Health Service employs ‘link’ workers to support patients to navigate health and social care systems. Emerge Australia advocates for link workers to similarly be funded in Australia to support people who face barriers to access the care they need. Such support from link workers is particularly important for people whose condition/s is poorly understood in medical and social care spheres.

Link workers can be funded and embedded within primary care services, to connect individuals to a range of relevant social and community resources and supports [5]. Link worker roles could also be funded within community organisations through PHN commissioning arrangements. Alternatively, a national link worker service for post-infection diseases could be established, enabling national consistency and quality with localised and community tailored delivery.

For people living with ME/CFS, the process of applying for the NDIS and DSP and appealing inaccurate decisions comes with a significant cost to health and wellbeing. Navigating the application process can trigger post-exertional malaise, leading to a worsening of symptoms for days, weeks or even months.

Emerge Australia have a strong understanding of the health and social care landscape in Australia and are the leading source of trusted information for many ME/CFS patients. We are well-positioned to design and deliver a linking function to triage patients accessing our Telehealth Nurse Case Management service into the NDIS and other relevant services.

Australian Government must Educate health care practitioners to provide appropriate, evidence-based, and timely support for ME/CFS and Long COVID patients

Evidence suggests health care professionals have little knowledge or expertise in diagnosing ME/CFS and other post infection diseases such as Long COVID. Differentiation between ME/CFS and Long COVID is critical for accurate diagnosis and patient management.

Only 27% of respondents in Emerge Australia’s 2019 Health and Wellbeing survey considered their GP to be well informed about ME/CFS. GPs need accurate, safe, and up to date information about management options. The lack of knowledge among healthcare professionals has been evident at the General Practice Convention & Exhibition (GPCE) events that have run this year. Emerge Australia has presented a key note address about ME/CFS and Long COVID at each of the three conferences in 2022, in Sydney, Perth and Brisbane, educating over 500 GPs. Feedback from attendees overwhelmingly supported the need for greater education about diagnosis and management of post-infection disease.

For those with Long COVID who experience symptoms of ME/CFS, symptom severity may be reduced, and likelihood of recovery may be increased, with early diagnosis and implementation of ME/CFS management techniques like pacing. Lack of practitioner knowledge means management techniques like pacing are infrequently prescribed.

SIGN UP for our newsletter at the bottom of our home page to stay up to date with ME/CFS news and research, and DONATE HERE to help us in developing more research and advocacy pathways.

To see our other stories and read more about our push for a national post-infection disease strategy, click HERE.

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