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

Personal Details
First Name: 
Last Name: 
This submission reflects the views of
Please add further information: 
CFS 8 years now
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Very Poorly
The depth of the suffering, extremely poor quality of life and horrendous levels of disability (at times a "living death") is downplayed. The inordinate amount of harm caused by patients attending medical clinics/hospitals due to scented products, noises, light, foods they are intolerant to and exertion is not mentioned. Despite Australia leading research into food and chemical intolerances (ubiquitous in the severely ill) in this field e.g. UNSW - Royal Prince Alfred Hospital Elimination Diet Handbook and the Monash FODMAPS app. Will the NHMRC add a section on The Patients Voice as the Centre for Disease Control has on its website? Will the NHMRC form focus groups in a similar manner to the NIH's focus groups on PEM and CPET ? Will the NHMRC implement online surveys/collaboration, in order to hear the voices of bed bound and housebound people with ME/CFS ? Such as the DePaul University's worldwide collaboration in designing a survey that captures the patients experience of PEM, the current NCNED survey on the economic loss caused by this disease ? The administrative processes around commenting on this report are at odd with the clinical needs of people with ME/CFS due to the cognitive challenges/exertion needing to answer questions rather than directly commenting on the report. The concerns with the report are wide ranging and the questions don't really appear to relate to the report which in parts is lacking in current clinical knowledge, information and understanding.
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?: 
Very Poorly
Replace the 2002 Guidelines with the Institute of Medicine Clinical Guidelines as a screening tool and the Canadian Consensus Criteria or its updated counterpart the International Consensus Primer for Medical Practitioners for more detail until there is sufficient research to design more appropriate ones. Professional education is needed BUT all material supporting GET/CBT needs to be withdrawn, as has already happened in the USA. The inordinate amount of harm caused by small amounts of overexertion is not captured. The fact that patients unwittingly over exert themselves triggering crashes of inordinate length and severity is not captured. Patients There are objective signs of ME/CFS despite the report stating otherwise– • Post exertional malaise - 2- day CPET. • Orthostatic intolerance - stand test • Sleep quality and quantity – heart rate/activity monitor • Cognitive impairment - cognitive tests. • Heart rate abnormalities and low temperature on exertion – heart rate/activity monitor. The onset of flu like symptoms after exertion appears unique to ME/CFS . The increase in disability the day after a CPET test appears unique to ME/CFS (not seen in MS, heart congestion or lung disease).
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?: 
More research is needed into management strategies on how to best manage the disease using objective physiological data to measure the techniques patients are currently using such as monitoring heart rate/temperature/activity and symptoms. Lack of appropriate Australian guidelines and research means that patients and clinicians are turning to online resources such as that of the Workwell Foundation for guidance beyond that in existing guidelines e.g. to learn how to use heart rate monitors to stay under their anaerobic threshold. GET/CBT is ineffective and many people with ME/CFS have been harmed by it and by following the Australian health policies that support it. The report is silent on the Workwell conceptual model and other research into objective measures of disability yet their model and findings are consistent with patients lived experience. The use of the CCC plus PEM, and Common Data Elements is strongly supported for research to aid international comparison of results.
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?: 
Research is needed to find less harmful ways of measuring disability than by the 2-day CPET test that is being used in Australia and internationally to objectively measure physical disability and PEM. Harm from GET and CBT is downplayed, the trials set an inappropriate bench mark for adverse events i.e. Hospital admissions. Research is needed to determine the best way to objectively measure It is unsafe to suggest that GET/CBT should be offered to all because it may help some, as health care providers have a duty to first do no harm. The delayed onset of this harm (PEM) is ignored, this means that patients often overexert themselves before they recognise that harm has been done.
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?: 
The report appears concerned with whitewashing ME/CFS history and supporting the status quo (as per the UK) rather than informing the CEO of the most effective strategic options. Patients want the focus to be on using the latest research and information, and to move forward wherever the science and the evidence leads them, as per the USA 2015 IOM report. The report fails to capture the excitement and breakthroughs in biomedical and physiological research into ME/CFS. The report does not clearly state that ME/CFS is organic with biological and physiological signs and abnormalities It fails to detail the lack of research funding when compared to other serious diseases of similar or less prevalence and similar extremely poor quality of life scores. The report is not accurate the severity, prevalence figures, quality of life, the permanency and lifelong disability caused by the disease it paints are based on decades old research based on broad diagnosis of CFS, not the strictly defined ME/CFS or ME. The plan to include patients at all levels of research is welcomed and patients have formed positive working partnerships with many researchers.

Page reviewed: 23 September, 2019