NHMRC recognises the importance of consumer and stakeholder input into the ME/CFS guidelines.

Opportunities to get involved

In accordance with the National Health and Medical Research Council Act 1992 (NHMRC Act), public consultation must occur to inform the development of guidelines that NHMRC issues and approves.

NHMRC intends to produce the ME/CFS Guidelines with a person-centred care focus and an emphasis on patient safety. We will provide opportunities to engage and provide feedback throughout the development process and will provide regular updates on progress through our website.

Stakeholder scoping survey

NHMRC conducted a scoping survey regarding relevant topics and issues to be considered for inclusion in the ME/CFS guidelines. The consultation closed on Sunday 27 April 2025, and more than 1,000 responses were received.

More information about the survey and the results are published on the Scope page.

Public consultation draft guidelines

Consistent with the NHMRC Act, NHMRC will undertake public consultation on the draft guidelines. Stakeholders are encouraged to participate in this process and provide feedback, which will be considered before the guidelines are finalised. Submissions received during public consultation will be published in full on the NHMRC website, with permission.

Project updates

We understand that the guideline process is lengthy, but it is required to ensure a robust and trustworthy final product. To keep interested parties informed, NHMRC will publish regular updates on the guidelines in a number of ways.

Guideline Development Committee meeting reports

We will publish summaries of each ME/CFS Guideline Development Committee meeting. You can read these from the Guideline Development Committee page.

Subscribe to NHMRC’s Tracker newsletter

For notifications about consultation opportunities related to the ME/CFS guidelines, as well as other NHMRC projects and funding opportunities, subscribe to our fortnightly newsletter, Tracker.

Subscribe to the ME/CFS mailing list

To be kept up to date on progress of the ME/CFS guidelines and any opportunities to provide feedback, complete the subscribe form below and be added to our stakeholder mailing list.

NHMRC is collecting personal information via this form from stakeholders who are interested in receiving updates on the development of new national guidelines for ME/CFS. This personal information is being collected so that NHMRC can communicate with you about these guidelines. NHMRC will not disclose your information to any third party without your consent. By providing this information, you are acknowledging that your personal information collected will be stored and used in accordance with NHMRC’s obligations under the Privacy Act 1988 and in accordance with the NHMRC Privacy Policy. Further information can be found in NHMRC's Privacy Policy

More information

If you have any further questions, please send your enquiry to me_cfs@nhmrc.gov.au. For research-specific queries you can visit the Consumer portal.

Frequently asked questions

General questions

Who is developing the ME/CFS guidelines?

NHMRC is developing the ME/CFS guidelines. NHMRC is funded by the Department of Health, Disability and Ageing to develop guidelines on ME/CFS in consultation with patients, health professionals and researchers.

What stage is the guideline development work up to?

NHMRC commenced work on the guidelines in September 2024 and is currently finalising the scoping and consultation phase and moving into the evidence review phase.

Between September 2024 and June 2025, NHMRC consulted widely with stakeholders to discuss the guidelines project and begin shortlisting potential Steering Committee and Guideline Development Committee members. The Steering Committee was appointed in December 2024. The Guideline Development Committee was appointed in June 2025.

In March 2025, NHMRC released a scoping survey that was designed to better understand the needs of the ME/CFS community, seeking input from patients, clinicians and carers. The survey was open between March and April 2025. NHMRC received over 1,000 submissions through the online consultation platform, by mail and by email. The survey report has been published on the website.

How long will it take to produce the ME/CFS guidelines?

Developing guidelines that are based on the latest evidence and that are trustworthy and implementable takes time. We want to ensure that a rigorous process is followed so that we can create a high-quality product.

The guidelines will be developed over a 3-year period, which commenced in late 2024. It is anticipated that an evidence review will be completed by late 2026 and draft guidelines will be released for public consultation by late 2027 or early 2028.

Guideline publication and dissemination is anticipated to occur in mid-2028. Refer to the Guideline development for ME/CFS webpage for further information.

Questions about the committees

What is the role of the Steering Committee?

The role of the Steering Committee is to provide advice on the composition of the Guideline Development Committee and the scope of the guidelines, including:

  • the general scope of the guidelines
  • the establishment and composition of the ME/CFS Guideline Development Committee, including reviewing conflict of interest declarations of prospective members
  • governance issues arising during the development of the guidelines. 

The Steering Committee met in December 2024 and in February, March and May 2025 to advise on the scope of the guidelines and potential membership of the Guideline Development Committee. The Steering Committee also advised on the development and publication of the scoping survey as part of their role in determining the general scope of the guidelines. 

What is the role of the Guideline Development Committee?

The Guideline Development Committee will advise on: 
the scope of the guidelines 

  • the evidence to be considered
  • the final recommendations. 

The first Guideline Development Committee meeting is anticipated for mid-2025. 

How were the Guideline Development Committee members selected?

NHMRC consulted widely with several stakeholders, including patient advocacy groups, clinicians, researchers, medical colleges and government agencies. Potential candidates for the Guideline Development Committee were sourced through an expression of interest process facilitated by medical colleges, consideration of NHMRC’s research networks, and suggestions through consultations with the above groups.

  • NHMRC carefully considered a range of candidates against the following criteria: 
    a degree of subject matter expertise in the topic areas through professional and/or personal experience
  • an ability to review the evidence and provide advice
  • an ability to provide an impartial perspective on the evidence and practice.

Potential candidates were asked to provide their declarations of interest for NHMRC assessment and were subject to NHMRC research integrity checks.

In forming the committees, consideration was given to:

  • clinical, research and patient lived experience necessary to advise on the evidence
  • disclosed interests
  • geographic location
  • gender balance
  • a balance of views across the Committee.

Questions about guideline scope and content

What is the scope of the guidelines?

The guidelines will primarily provide advice on diagnosis and management of ME/CFS.

How will other conditions such as Long COVID, fibromyalgia or postural orthostatic tachycardia syndrome (POTS) be included in the guideline?

The guidelines will primarily provide advice on diagnosis and management of ME/CFS; however, we recognise there are other conditions that share common symptoms with ME/CFS, including Long COVID, fibromyalgia and POTS. These conditions will be referenced where appropriate.

Will the guidelines cover graded exercise therapy (GET) and cognitive behavioural therapy (CBT) as treatments for ME/CFS?

There are different approaches related to advice on the diagnosis and management of ME/CFS. NHMRC intends to produce guidelines that have a person-centred care focus that emphasise patient safety. The Guideline Development Committee will prioritise questions to be considered in the evidence review phase of the project, which will determine how GET and CBT may be handled in the guidelines. 

Communications and consultation

How do I remain up to date with what is happening with the guideline development process?

We have developed a webpage where we will post status updates and communiques throughout the guideline development process: Communication on ME/CFS guideline development.

We’d like to be involved in the guidelines. How can we get involved?

We are continuously consulting with a broad range of stakeholders in the ME/CFS lived experience, clinical and research communities. 

For notifications about consultation opportunities related to the ME/CFS guidelines, we suggest signing up for NHMRC’s fortnightly newsletter, Tracker.