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

ID: 
48
Personal Details
First Name: 
Rebecca
Last Name: 
Meagher
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Very Poorly
Comments: 
Australia must develop new clinical guidelines about ME/CFS to include recent biomedical research findings. Using 17-year old guidelines is causing harm to ME/CFS patients and misguiding clinicians.
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 Poorly
Comments: 
Australia must increase ME/CFS medical education for all clinicians.
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Strongly Disagree
Comments: How could the recommendations be improved?: 
Australia must devote funding for biomedical research into ME/CFS.
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Strongly Disagree
Comments: How could the recommendations be improved?: 
GET/CBT must be removed from clinical guidelines as a mandatory treatment.
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Strongly Disagree
Comments: How could the recommendations be improved?: 
Australia must use the Canadian Consensus Criteria for biomedical research.

Page reviewed: 23 September, 2019