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Consultation on draft report to the NHMRC CEO for ‘Myalgic Encephalomyelitis / Chronic Fatigue Syndrome’ submission

ID: 
72
Personal Details
First Name: 
Geoff
Last Name: 
Kewley
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Very Well
Comments: 
I think that overall the report does this very well. It possibly could emphasise a little more the reality of living with CFS/ME, particularly when there are complicating factors. Perhaps more emphasis on the Quality of life issues could be made. As the committee points out to an extent this can only be done once there is more societal awareness of the condition not being regarded as a psychosocial condition but as having a biological basis in some form or other.
1b. How well does the report present 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?: 
Very Well
Comments: 
I am impressed that the committee has tried to combine the clinical management side of CFS/ME and also the research side. I am a Paediatrician who for many years has managed children and adolescents with CFS/ME both in UK and Australia. I'm also the parent of an adult daughter with severe CFS. I still find that there is an inordinate amount of scepticism from my medical colleagues about the condition. I liken it to changing attitudes to ADHD in which I was very involved. Initially it was regarded as a psychosocial condition and change was gradually affected both by continual emphasis on the reality of living with the condition, and the gradual acknowledgement that there was a biologic/brain function basis to it. I would hope that through the various Royal colleges a package could be put together that would emphasise the key issues along these lines and give the nations the ability to accept it as an internationally recognised medical condition and disability for which medical and other approaches are essential.
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Agree
Comments: How could the recommendations be improved?: 
I think the recommendations are very good. I would possibly emphasise a little more the importance of international collaboration and to very much be part of the international CFS/ME research community which in the last few to appears to become increasingly complex and effective.
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Agree
Comments: How could the recommendations be improved?: 
I think that it has done very well within the remit of this sort of report and any gaps can be built on with later steps..
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Strongly Agree
Comments: How could the recommendations be improved?: 
I feel that the recommendations and the report are excellent and I can't see that any changes are necessary to inform the CEO. Committee have done an excellent job.

Page reviewed: 23 September, 2019