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

ID: 
50
Personal Details
First Name: 
Patricia
Last Name: 
Feinberg
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Well
Comments: 
Australia needs to 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. More research must be done and updated to include new technologies to address this horrible disease. People should not have to suffer and lose everything that they have achieved because of an "unknown" and misguided diagnosis. We are close to curing all types of cancer, why not this?
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?: 
Well
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Agree
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Agree
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Neutral

Page reviewed: 23 September, 2019