NHMRC draft ME and CFS report asks for feedback

screenshot of NHMRC website

By Sasha Nimmo

Released on the Friday before Christmas, the Australia’s National Health and Medical Research Advisory Commission’s draft report on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome is open for comment.

People and organisations are encouraged to respond to the draft report by noon AEDT, Monday 18 February via the online public consultation portal.

The Consultation on the Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Advisory Committee Report to the NHMRC Chief Executive Officer has the draft report, explains what is in the scope of the report and details on how to give feedback.

For further information contact ME_CFS@nhmrc.gov.au

Terms of reference

The NHMRC Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Advisory Committee will advise the Chief Executive Officer of NHMRC on the research and clinical guidance requirements for Australia of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS).

To provide this function, the Committee will advise on:

  1. the status of national and international research into ME and CFS
  2. gaps in research on ME and CFS. This will include but not be limited to research on the immunology, psychology, microbiology and virology of the conditions, as well as any health services research
  3. the status of clinical guidance on ME and CFS available to doctors and health professionals
  4. requirements and opportunities for improved clinical guidance
  5. any other issue on ME and CFS that the NHMRC Chief Executive Officer may request
  6. submissions received through the public consultation process

The Committee will be effective for the period 31 October 2018 to 30 April 2019 and will report to the Council and Chief Executive Officer of NHMRC.

History
In 2002 the government-funded Australian clinical guidelines for chronic fatigue syndrome were released and immediately condemned by patient groups and the Senate for ignoring scientific evidence, focussing on psychological aspects and stating that patients’ beliefs were holding back their recovery.

In June 2017, CEO of the NHMRC Dr Anne Kelso told a parliamentary hearing decisions on proceeding with a targeted call for research would take “months not years”. Discussing a targeted call for research, Dr Kelso explained that a standard targeted call for research is a million dollars per year for three to five years. Read Australia’s medical research council promises ‘serious exploration’ of research for ME within months.

The NHMRC Advisory Committee began meeting in December 2017 and last held a meeting on 18 October 2018 to finish their draft report. Here are the descriptions of their meetings.

Read more:
Australian government’s ME and CFS advisory committee

Making the most of the NHMRC committee

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