NHMRC is currently working with the ME/CFS Guideline Development Committee to determine what will be included in the new ME/CFS guidelines.

What will be included in the guidelines

NHMRC is conducting a series of scoping activities to assist in prioritising key areas for inclusion in the Australian ME/CFS Clinical Practice Guidelines.

As part of these activities, NHMRC consulted with the ME/CFS community via a Scoping Survey conducted between 21 February and 27 April 2025. The findings from the Scoping Survey will be considered by the NHMRC and the ME/CFS Guideline Development Committee when refining topics for inclusion in the guidelines.

NHMRC would like to thank respondents for their participation in the survey and acknowledge the devastating impact ME/CFS has on individuals, families and the broader Australian community.

ME/CFS Scoping Survey

Content warning: The Scoping Survey Report discusses topics related to ME/CFS that include experiences of illness, healthcare challenges and distressing personal accounts. Some readers may find certain sections emotionally challenging. Reader discretion is advised.

The ME/CFS Scoping Survey was released by NHMRC on 21 February 2025 and was open for 9 weeks through to 27 April 2025. The survey was open to the public and was designed to gather insights from individuals with ME/CFS and related conditions (Long COVID, postural orthostatic intolerance syndrome (POTS) and fibromyalgia), carers, GPs and other healthcare professionals that provide care to people with ME/CFS and related conditions, researchers and consumer organisations. The purpose of the survey was to understand what stakeholders consider priorities for inclusion in the new Australian ME/CFS Clinical Practice Guidelines and to understand patient and healthcare professionals’ experiences of barriers to and/or enablers of care.

A total of 1,087 responses were received from individuals, organisations and healthcare professionals. Most responses were from individuals with ME/CFS or a family member or carer of someone with ME/CFS.

Respondents highlighted that ME/CFS is an under-represented condition and that they often felt dismissed when seeking support. Respondents were keen to have clearer information about diagnosis in the new guidelines, including consistent diagnostic criteria. Ideally these consistent diagnostic criteria would be used universally by primary care clinicians across Australia. Respondents were clear that new guidelines should move away from outdated perspectives that the condition is psychological. Instead, respondents would like the new guidelines to acknowledge that ME/CFS has a biomedical basis and that the suggested cardinal symptom, post-exertional malaise (PEM), requires careful management, especially for those with severe ME/CFS. Respondents mentioned that there are controversies surrounding graded exercise therapy, noting that due to PEM, pacing and staying within an ‘energy envelope’ was important to avoid overexertion and symptom exacerbation.

Respondents also indicated that the guidelines should include patient-centred models of care and referral pathways for multidisciplinary care that include social supports and funding for interventions.

Respondents stated that ME/CFS can have an ongoing impact on an individual’s ability to work or go to school which can compound financial pressures and have an impact on broader social issues. Respondents indicated that these broader issues should be considered in the guidelines, especially the barriers experienced by patients when trying to access support services in Australia.

The general sentiments raised by respondents are summarised below and illustrate the complexity and deeply impactful realities facing ME/CFS patients.

General sentiment of responses

  • Many individuals living with ME/CFS report feeling unsupported and profoundly isolated (especially those with severe ME/CFS). There is a strong sense of being left to navigate the condition alone, often while experiencing cognitive impairments such as brain fog. Unlike other illnesses that receive structured support and clearer outcomes, ME/CFS is perceived as lacking both recognition and assistance, contributing to feelings of invisibility and loneliness.
  • There is a call for clinical guidelines to acknowledge the historical context of harm and misinformation surrounding ME/CFS, with emphasis on correcting past misconceptions and ensuring that healthcare professionals become more aware of the condition and appropriate management strategies.
  • The impact that ME/CFS has on personal relationships and daily life is described as devastating. The condition affects every aspect of a person’s life, leading to the loss of social connections, career opportunities and hobbies, while often being met with disbelief by others, contributing to emotional distress.
  • Healthcare interactions are frequently described as traumatic, with many individuals experiencing dismissal and a lack of appropriate support. These experiences often exacerbate the condition and lead to further isolation and adverse outcomes.

 For more details about what the survey found, please read the full Scoping Survey Report.