Scoping survey for Clinical Practice Guidelines for myalgic encephalomyelitis / chronic fatigue syndrome

Overview

The National Health and Medical Research Council (NHMRC) is responsible for funding health and medical research in Australia and developing and approving health and ethics guidelines. 

NHMRC has been tasked by the Minister for Health to develop clinical practice guidelines for myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS guidelines). The ME/CFS guidelines will provide advice on the diagnosis and management of ME/CFS within primary care. NHMRC recognises there are other conditions (such as long-COVID, postural orthostatic tachycardia syndrome (POTS) and fibromyalgia) that share common symptoms with ME/CFS, and we will make reference to these conditions where appropriate.

The guidelines will focus on the interactions between patients and general practitioners and will provide referral pathways where appropriate. Clinical practice guidelines are intended for health professionals to be applied in the health sector.

The guidelines will not include recommendations for other sectors such as educational institutions, legal, government or employment support services.

Why your views matter

In order to better understand the needs of the community, this scoping survey has been developed to:

• understand the needs of the community regarding clinical practice guidelines
• understand potential enablers and barriers to the care of people with ME/CFS
• establish priority areas for evidence review that reflect the needs of the ME/CFS community
• identify appropriate formats for the guidelines 
• identify further areas for research where the evidence base is lacking.

Your views will help develop guidelines that are useful and address the priorities of the community.

How can I make a submission?

Submissions should be made via the online survey below.

The survey invites responses on a range of questions and provides space for additional comments. You do not have to respond to all questions.

The closing date for submissions is 27 April 2025. If you have any questions or need further information, please email me_cfs@nhmrc.gov.au.