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

ID: 
22
Personal Details
First Name: 
Shri
Last Name: 
Ram
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Ok
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?: 
Ok
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Disagree
Comments: How could the recommendations be improved?: 
The recommendations need to factor-in a greater need for urgency in quality research as the ME/CFS condition is highly debilitating and drastically reduces the quality of life for patients suffering from it.
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Neutral
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Neutral
Comments: How could the recommendations be improved?: 
While I cannot comment on the efficacy/appropriateness of research options, it is critical that Australia updates its clinical guidelines about ME/CFS swiftly and funds quality research immediately.

Page reviewed: 23 September, 2019