Australian government ME and chronic fatigue syndrome committee lacks transparency

screenshot of NHMRC website

by Sasha Nimmo

The Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) Advisory Committee, set up by the National Health and Medical Research Council to advise the government on research and clinical guidelines, has one more meeting before releasing their report for public consultation.

The ME and CFS Advisory Committee will be finalising the report at the next meeting. The same group of people are advising the government on who should be consulted. People with ME in Australia have pushed for a more transparent process and consultation with experts.

If you would like to be notified when their report is available to the public and open for feedback, email the NHMRC at me_cfs@nhmrc.gov.au.

The minutes from August and September meetings have not been published yet. Previous meetings’ minutes are on the NHMRC website.

The NHMRC have added a section ‘Information for Clinicians‘ which does not include the International Consensus Primer on Myalgic Encephalomyelitis for Medical Practitioners, the booklet endorsed and provided by Australian patient organisations to their members and to GPs. The ICC authors are the world’s leading experts, including Australia’s Prof Marshall-Gradisnik, Prof Staines and Dr Don Lewis.

The NHRMC links to a number of resources for clinicians which recommend exercise, cognitive behavioural therapy and antidepressants.

text from RACGP website recommending antidepressants, CBT and graded exercise
From the RACGP website, recommended by the NHMRC.

5 thoughts on “Australian government ME and chronic fatigue syndrome committee lacks transparency

  1. What a terrible waste of time. M.E. is not CFS and there is no such illness in the ICD for ME/CFS or CFS/ME. No-one with cancer would tolerate this historical reference stupidity. Playing to the benefit Insurance Companies and ‘quack’ doctors flogging cures for CF. God help us all!

  2. My partner has ME/CFS and tells me every night before bed “if I die, tell my kids and my Mum I love them”. What do you say to that. Hidious disease it is, so hard to see someone so ill day in, day out, and not a thing anyone can do 😓 More funding is desperately needed!

  3. Please tell me if there is any cure or hope of cure for CFS . The latestaustralian Ms research seems to be based around the Epstein Barr virus which my daughter had a which seemed influential on her CFS which she has endured for 5 years . Will this research also help to treat CFS?

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