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

ID: 
21
Personal Details
First Name: 
Dorothy
Last Name: 
Bruck
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Poorly
Comments: 
The first step in obtaining clinical care for ME/CFS is obtaining a diagnosis. The report over-emphasises historical diagnostic ambiguities and the historical confusion of ME/CFS being considered a psychological/behavioural condition (when multiple lines of evidence shows it clearly has significant physiological manifestations at both onset and on an ongoing basis) or perpetuated by psychological factors (when this is not the case). There are now clear, well recognised guidelines for diagnosing ME/CFS that include PEM and the report should note that using these absolutely minimises the ambiguities of diagnosis. As an academic and practising psychologist specialising in sleep, including disorders of excessive daytime sleepiness, I have on numerous occasions drawn on my relevant research (author on 8 peer-reviewed journal papers on ME/CFS) and carer background (my 27 year old son is bed-bound with ME/CFS) in the condition to make a preliminary differential diagnosis of ME/CFS compared to a possible sleep disorder. I find the Canadian Consensus Criteria very useful but there are other possibilities that include PEM as a key symptom. In addition, a key problem for patients is knowing which doctor or specialist might know something about the cluster of symptoms they are experiencing. Not only must primary care physicians be up-skilled about ME/CFS, a medical specialty must begin to 'own' the disorder so that a GP suspecting ME/CFS will know who to refer the patient to. Obviously that medical specialty must be well trained about the disorder. This will save patients a lot of time, money and heartache and hopefully reduce the tendency to consult a wide range of complementary medical personnel whose treatments may or may not be based on any evidence-based principles.
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: 
The current Australian 2002 guidelines should be immediately withdrawn and replaced by some interim documents giving clinicians guidance while a new set of guidelines is developed, drawing on the latest evidence base as well as consumer input. This would include not recommending GET/CBT as a core treatment for ME/CFS and alerting clinicians and patients that GET may be harmful. I believe that presenting GET/CBT under 'community concerns' trivalises the issue. Many researchers and clinicians who specialise in ME/CFS are aware of the problems with the GET research, including of course, the [NHMRC has removed third party information] Clearly there is a lack of consensus about the best biologically-informed management tools for the illness and this is a major challenge for clinicians. This is a critical area requiring urgent and significant research funding - both to clarify the core pathologies of this heterogeneous, multi-system and complex disorder and test the evidence-base for possible treatments. Given the heterogenous basis of ME/CFS, a research approach confined only to randomised placebo-controlled trials may not be the most beneficial approach at this stage of our understanding.
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?: 
Key points on this have been mentioned above. In addition the report does not really provide a realistic picture of how disabling the disease is for some people, whereby they may not even be able to feed and toilet themselves. On top of this, more emphasis could be given to the fact that patients are often stigmatised by others, including importantly, the medical profession. The life-changing impact of being so sick, to not know why, to not be believed and to be given no hope with regard to treatment cannot be over-emphasised.
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?: 
The TCR and Consortium recommendations are both important first steps. As ME/CFS appears to be such a complex, multi-faceted disorder the worry is that these research initiatives may only be for 3-5 years and then the funding and interest from the NHMRC might decline before significant research outcomes have been achieved. The new and emerging researchers who enter this field should ideally be given ongoing prospects for research employment, otherwise we cannot hold them here in Australia and the government therefore does not get good return from its investment in their training
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 Strategic Focus areas of 1 and 3 are vitally important and long overdue. Area 2 is worthwhile for lobbying and awareness raising in policy development settings but will probably have less positive impact for patients than the others.

Page reviewed: 23 September, 2019