ME/CFS remains under-recognised and under-supported worldwide despite its debilitating nature. Until recently, there was no national clinical guideline in Australia adequately addressing the management and care of people with ME/CFS.
In June 2024, the Hon Mark Butler MP, Minister for Health and Aged Care, announced that the Australian Government would provide $1.1 million to the National Health and Medical Research Council (NHMRC) to develop new clinical guidelines for ME/CFS, long COVID, and related conditions. These guidelines are to be developed in consultation with patient groups, health professionals, and medical scientists. While the term “chronic fatigue” was used in the announcement’s title and article – a phrase many with ME/CFS object to, as it reduces the disease to a single symptom shared with many other conditions – any initiative that genuinely improves support for individuals with ME/CFS is to be welcomed.
The Medical Republic reports that this will be the first national guideline for ME/CFS in 22 years. They further add that the only existing Australian guideline, published by the Royal Australasian College of Physicians (RACP) in 2002, recommends treatments such as graded exercise therapy (GET), cognitive behavioural therapy (CBT), and antidepressants – approaches now widely criticised by patients and advocates.
Speaking to The Medical Republic, Anne Wilson, CEO of patient organisation Emerge Australia, expressed hope that the NHMRC would co-design the new guidelines with patients and that “the evidence around the harm that’s caused by graded exercise therapy for people with ME/CFS is recognised”. She also expressed that the current guideline does not include post-exertional malaise – the hallmark symptom of ME/CFS – to be included in the diagnostic criteria, as with other countries.
In the UK, the NICE 2021 guideline for ME/CFS was broadly welcomed by patients and advocacy groups, as it addressed major concerns with the earlier 2007 version, particularly the recommendations for GET and CBT. However, the update was not without controversy. In July 2023, three PACE trial authors and over 50 international specialists, led by researchers from King’s College London, published a critique of the changes, describing them as a “controversial U-turn.” In response, NICE defended the guideline, stating it had been developed by an independent committee through a transparent process aligned with recognised standards.
