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Consultation on the Myalgic encephalomyelitis and Chronic fatigue syndrome Advisory Committee Report to the NHMRC Chief Executive Officer

Closed on Monday, 18 February 2019, 11:59pm (AEDT). Submissions are no longer being accepted.

The National Health and Medical Research Council (NHMRC) Myalgic encephalomyelitis and Chronic fatigue syndrome (ME/CFS) Advisory Committee (the Committee) is releasing the draft ME/CFS Advisory Committee Report to the NHMRC Chief Executive Officer (the draft Report) for public consultation. The Committee invites the Australian community to provide comments on its draft Report (Attachment A) before finalising and providing it to NHMRC’s CEO. The Committee’s report to the CEO will help to inform decisions about what NHMRC can do given its dual role in supporting health and medical research and developing evidence based health advice for the Australian community.

The aim of public consultation on the draft Report is to obtain feedback on:

 1)    Does the draft Report provide an accurate summary of:

  • the difficulties faced by ME/CFS patients in receiving clinical care
  • the challenges facing clinicians in providing care when there is lack of clarity on diagnostic and management tools, and minimal professional education about the condition?

 2)    Do the research and clinical guidance recommendations accurately:

  •  address the specific needs of the ME/CFS community
  • provide an accurate representation of the current gaps in research
  • inform the CEO of research options and clinical guidance needs that are relevant for ME/CFS patients?

Background

Myalgic encephalomyelitis / Chronic fatigue syndrome (ME/CFS) is a complex health condition that can be highly debilitating. Whilst Australian research is starting to make an impact, the lack of significant research funding and clear treatment pathways has led ME/CFS patients and advocacy groups to call for increased funding for research, treatment and support as well as greater awareness and recognition of the condition in Australia.

In October 2017, NHMRC established the ME/CFS Expert Advisory Committee (the Committee) under section 39 of the National Health and Medical Research Council Act, 1992. The Committee is comprised of clinicians, researchers and consumer representatives, including two people with ME/CFS. The Committee is tasked with advising NHMRC’s CEO about the needs for ME/CFS research as well as clinical guidance on diagnosis and treatment in Australia.

The draft Report is based on the advice of the Committee and is underpinned by four core principles: consumer engagement, consistency, collaboration and capacity building.

Details on the Committee membership and summaries of meetings can be found on the NHMRC website at https://nhmrc.gov.au/myalgic-encephalomyelitis-and-chronic-fatigue-syndrome.

Scope of this public consultation

The ME/CFS Committee is seeking responses to specific questions that relate to the aims of the public consultation outlined above. All submissions must be made through this online public consultation portal. If this is not possible, please contact the Project Team (ME_CFS@nhmrc.gov.au) to make alternative arrangements.

Comments on the draft Report close at 11:59 pm AEDST on Monday 18 February 2019.

The Committee will only give consideration to submissions that address the prescribed consultation questions. 

Out of scope for this public consultation

The following types of submissions are out of scope and will not be considered:

  • Detailed personal history/narratives
  • Personal medical information/records
  • Opinion pieces/blogs/newspaper articles   
  • Personal opinions regarding committee membership
  • Research proposals or requests for funding of specific projects
  • Specific recommendations for clinical care.

How the Committee will consider submissions

The Committee will consider all submissions that are in scope of the public consultation questions.

Consultation documents

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Consultation date

Please note the Timezone is AEDT.

Opening date: 
Friday, 21 December 2018 - 9:00am
Closing date: 
Monday, 18 February 2019 - 11:59pm
Extension: 
Please note that for some NHMRC consultations no extensions will be given. Where extensions are available you will need to contact the project officer using the contact details at the bottom of this page. However, in order for NHMRC to extend the date of a submission you will need to have created an account and started a submission.
Contact for further information
Public submissions

Page reviewed: 11 February, 2019