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

ID: 
63
Personal Details
First Name: 
Sacha
Last Name: 
Bryning
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Ok
Comments: 
In my experience it is incredibly difficult getting access to proper medical care. The report doesn't mention the challenge faced by bedbound sufferers getting to appointments or the lack of rebate options for skype/tele appointments much less the lack of understanding from a broad majority of the medical community when it comes to making face to face appointments.
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
Comments: 
Great to see the recommendation for new guidelines being proposed. Our only concern is with reliance on resources such as old guidelines that propound the clinical use of GET and CBT as go to treatments. These have only ever been harmful in our experience and we welcome that change that is proposed but suggest looking to other regions that have created useful primers until a Biomarker can be identified. Please consider the ongoing deemphasis of 'psychological factors' in your report. These have created a harmful stigma for patients in Australia.
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?: 
There's a few points that don't accurately reflect data in regards to the rates of recovery (it should be acknowledged that few people recover and indeed get worse). The severity also seems a little downplayed, no covering how disabling it can be.
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