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

ID: 
9
Personal Details
First Name: 
Shannon
Last Name: 
McGrath
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Well
Comments: 
The information is well documented.
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: 
It does explain the biggest problems that people face. Getting a diagnosis is the biggest problem people face.
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?: 
This needs to be followed up with funding. The report describes what is required and there needs to be an allocation of resources to address this.
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?: 
There is research being constantly updated and I believe gaps are being addressed.
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Agree
Comments: How could the recommendations be improved?: 
I agree and look forward to ME/CFS being better recognised and supported. I hope that the advisory committee is fully funded and that their research is implemented.

Page reviewed: 23 September, 2019