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

ID: 
11
Personal Details
First Name: 
Marilyn
Last Name: 
Gavranovic
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Ok
Comments: 
WELL - by recognizing the need for Doctor Education nationally to advance timely & accurate diagnosis, patient care & to eradicate stigma NOT WELL - by not stressing the Urgency of the need for the above Doctor Education or medical advice to Rest in the acute phase of illness to assist recovery NOT WELL - by disallowing feedback here re the many serious harms endured in current clinical settings. Many patients have been forced to become expert, have lived with the whole-life fallout of ME for more than 20 years & are an experienced & valuable resource NO - by thus silencing the voices of thousands of ME Seniors[55+] who are living proof of ME permanency
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: 
WELL - by noting the need for Doctor education WELL - by noting the diversity of Guidelines, the lack of understanding of pathophysiology, absence of a biomarker & past focus on BPS theory recommending GET & CBT [now discredited as lacking objective evidenced & harmful] NOT WELL - by not referencing the plethora of test & treatment information available since 1950s
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?: 
Recommend: 1. the use of the conflation MECFS be Retired as it inaccurately suggests that the diagnoses are equivalent, . [ ME is a neurological disease & CFS is a fatigue syndrome WHO ICD - 1969] 2. ME & CFS be treated & researched independently to maximize efficacious outcomes 3. ME & CFS be given Medicare numbers for treating physicians to bill 4. ME & CFS Statistics be updated & tracked specifically death, suicide, prevalence & permanency, gaps in social supports, impact on children & teens, burden of disease 5. treatment focus be on Recovery, before Rehabilitation, before known pathophysiology 6. the International Consensus Criteria / ICC [updated from CCC] be adopted for ease of reference, use, accuracy and research consistency
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Disagree
Comments: How could the recommendations be improved?: 
by recognizing that the gap is biomedical research by committing to address the biomedical gaps in ME & CFS research by committing to support current Australian biomedical research by funding replication as needed, to speed a biomarker & treatment
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Disagree
Comments: How could the recommendations be improved?: 
Adopt ICC guidelines for simplification & accuracy Advise the urgent need to fund biomedical research Advise the urgent need for collaboration with Australian biomedical researchers

Page reviewed: 23 September, 2019