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

ID: 
10
Personal Details
First Name: 
S.
Last Name: 
Marsh
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Well
Comments: 
The report presents the difficulties well with particular regard to the statement “the dominant treatment paradigm has assumed that me/cfs is a condition that may be initiated by a biological process but may be perpetuated or exacerbated by psychological factors”. This is the basis of the problem that pervades research and clinical care in Australia for patients and is not based on any quantitative data but just theory. The nhmrc report could have made more emphasis on this fact and that the biosphycosocial model does not help the vast majority in terms of the productivity or physical function of patients under the label me/cfs.
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
Comments: 
The report could have better explained that the current guidelines are 17 years old and legally expired from use 7 years ago. However it was well explained and recommended that new guidelines are desperately needed with up to date treatment guidelines providing information from global treatments focussing on objective productivity.
Comments: How could the recommendations be improved?: 
The recommendation of the use of the Canadian consensus criteria with the mandatory symptom of post exertional malaise for medical research is critical for diagnostic purposes going forward. The linking of post exertional malaise with sleep disturbance as defining symptoms of cfs/me would negate the concern of some panel members that post exertional malaise does occur in other disorders. Also, there seems to be a difference between adolescent and adult response to treatments that could have been mentioned.
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Agree
Comments: How could the recommendations be improved?: 
It needs to be emphasised regarding clinical care that graded exercise therapy based on the deconditioning theory improves outcomes in a subset of patients under the label. According to the latest evidence this subset is about one in 10 using a subjective scale and great harm can be inflicted on patients if they fall outside this ring fenced subset. This is where accurate data needs to replace theory when clinical recommendations are given which is where the current 2002 guidelines have been unhelpful for the majority. Evidence from trials that are based on short term subjective outcomes for clinical and research purposes, should be assessed as of little value or highlighted. Also, some clinics and hospitals in Australia have greatly exaggerated the efficacy of rehabilitation programs far beyond the remit of the 2002 guidelines and the current evidence base. Blame has sometimes fallen on the patient if rehabilitation fails. For this reason the nhmrc report rightly advises on a full update of the current guidelines and not to further disseminate the current ones.
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Agree
Comments: How could the recommendations be improved?: 
The report was well done with regard to an emphasis on biomedical research going forward.

Page reviewed: 23 September, 2019