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

ID: 
23
Personal Details
First Name: 
Rachel
Last Name: 
Hockey
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Poorly
Comments: 
I think the needs are under estimated
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?: 
Poorly
Comments: 
Currently housebound patients aren't being cared for at all in some places. Patients are unable to access care. If they can reach a doctor, they are abused or not understood often. They're is a real need to update training to encompass the biomedical model of me/cfs. Patients are experiencing neglect and abuse. The need for clinical education is evident
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?: 
There is URGENT need for the clinical guidelines for me/Cfs to be updated and to exclude CBT/get as treatment. There is huge need for funding into biomedical research into me/cfs. The funding of psychology research into the condition is not negotiable to patients.
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?: 
There is URGENT need for the clinical guidelines for me/Cfs to be updated and to exclude CBT/get as treatment. There is huge need for funding into biomedical research into me/cfs. The funding of psychology research into the condition is not negotiable to patients.
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?: 
Funding for biomedical research!

Page reviewed: 23 September, 2019