Australian Government report recommends increased ME/CFS research funding

An Australian Parliamentary Report into long COVID has included a specific recommendation on ME/CFS research funding and even produced an addendum centring on ME/CFS ‘given the volume of evidence regarding ME/CFS received, the Committee considers it is useful to acknowledge and discuss this topic.’

Following a referral on 1 September 2022 from the Minister for Health and Aged Care, the House of Representative’s Standing Committee on Health, Aged Care and Sport inquired into Long COVID and Repeated COVID Infections. The Report ‘Sick and tired: Casting a long shadow’ was published in April 2023 and significantly in the Chair’s Forward to the Report, Dr Mike Freelander MP acknowledged

We have received many submissions from individuals suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Whilst there may be some crossover with long COVID, we believe that long COVID is a separate issue to this.

Nevertheless, the ME/CFS community should be supported and researched developed to assist them and provide support.

In consequence of submissions received and evidence reviewed, Recommendation 8 of the Report stated specifically that

The Committee recommends funding be made available for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) research and patient support and that this funding should be allocated in consultation with peak bodies for ME/CFS and with note of the recommendations of the ME/CFS Advisory Committee’s 2019 report to the National Health and Medical Research Council.

Overall, AUS$50m in additonal government funding has been pledged by Health Minister Mark Butler MP towards research into long COVID with better data collection, guidelines for treatment, a national summit to review Australia’s response to COVID (including long COVID), more support and education for GPs to treat long COVID, and a panel to advise on indoor air quality also mooted alongside a national plan.

In general, the addendum discussion fell under 2 headings

1. A possible overlap between long COVID and ME/CFS, both in terms of their definitions and/or symptoms.

The Report concluded “The Committee notes the clinical parallels between ME/CFS and long COVID. However, in the absence of strong evidence establishing that these are the same condition, the Committee agrees with the AIHW [Australian Institute of Health and Welfare] that these conditions should not be conflated.”

The addendum narrated submissions which showed that current working definitions of long COVID are not yet specific and overlap significantly with other post-infectious illnesses but that clinical evidence about a possible overlap between ME/CFS and long COVID is not yet clear.

Overall, the Report stood on the terms of the AIHW paper, ‘Long COVID in Australia – a review of the literature’ which indicated that “further research is needed to investigate the relationships between the 2 conditions [long COVID and ME/CFS] and care should be taken not to conflate the 2 conditions until more is understood.” The AIHW further noted that “…ongoing symptoms post infection is not limited to long COVID and ME/CFS. Various other infections have been known to cause chronic symptoms collectively referred to as post-acute infection syndromes.”

2. Individuals’ experiences with ME/CFS, which some submitters and witnesses argued were relevant to inform a response to long COVID given apparent similarities between the conditions.

In the final words of the addendum the “Committee acknowledges the challenges that individuals with ME/CFS in Australia face.”

The committee was no doubt moved by the submissions made by notable Australian ME/CFS organisations as the addendum carried quotes from Emerge Australia who submitted that the country was

…unprepared for Long COVID, because the medical profession has long neglected and ignored patients with post-infection disease. The scale of the COVID-19 pandemic, and subsequent numbers of Long COVID patients, has been so large the world has been forced to acknowledge what the ME/CFS community, and clinicians and researchers in the field, have long known: post-infection disease is real and devastating

with ME/CFS Australia, noting in its submission that

Evidence continues to indicate that people with ME/CFS are disparaged by many health practitioners, experiencing stigma that impacts the health and well-being of those affected and undermining the prevention, early diagnosis, management and health outcomes of the condition…There is no designated specialty for ME/CFS, so diagnosis and management usually take place in primary care. Doctors, nurses and allied health practitioners in General Practice need to be supported by information, education and tools to deliver both early diagnosis and effective ME/CFS care

The Report and addendum have been widely covered in the Australian press with former ME Research UK-funded researcher Dr Brett Lidbury quoted on ABC News suggesting “….. 30 years of dedicated post-viral fatigue research could give scientists “a massive head-start” in understanding long COVID” referencing work done in ME/CFS.

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