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

ID: 
83
Personal Details
First Name: 
Amber
Last Name: 
Short
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Poorly
Comments: 
breifly mentions there are limitations in being believed,dissmissed and a failure to access NDIS. Does not discuss what limitations effect patients including ecconomic factors, access due to incapacitation, poor access due to lack of available services ( especially outside of the 5 major cities) Does not adequately discuss the impacts of the limitations of care or the significance of limited care.
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: 
Some good information about the lack of consistant diagnosistic criteria both nationally and internationally. Does not discuss what care options are available or how to proceed with management. Which individiauls would be most effective in diagnosis or specialist for treatment.
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Agree
Comments: How could the recommendations be improved?: 
there is deffinatly a need to have a streamlined view of diagnostic criteria which is identified. There is no discussion about who would be considered to be an expert in helping to develop guidlines or how new guidlines would be effectivly taken up.
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Disagree
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?: 
some good recomendations made but significantly lacking in details. All in all the report lacks signficant details and does not address the complexity of patients, largely focuses on the differance in diagnosis criteria and lacks details on how any of the reccomendations may actully be implamented in a realisitc way.

Page reviewed: 23 September, 2019