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

Personal Details
This submission reflects the views of
Organisation Name: 
Chambers Family
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Very Poorly
i) The report does not acknowledge the obstacles ME/CFS patients have accessing knowledgeable medical practitioners who believe they are ill; especially those who are housebound or bedbound or in remote areas. There are few doctors available and teleservices don’t attract a Medicare rebate; ii) The report also doesn’t clearly indicate that the illness is biological, despite there being clear biomedical evidence from Australian and overseas research; iii) Many patients are unable to work due to their illness, but find it difficult to access appropriate Centrelink benefits so find it difficult to fund their consultations. Accessing Centerlink is more difficult because Centrelink medical advisors still rely on the 2002 Royal Australasian College of Physicians (RACP) Guidelines which are out of date and should be retired. iv) All GP’s should be advised of the extreme risk and consequences with prescribing Graded Exercise Therapy (GET) for ME/CFS patients diagnosed with the illness using the Canadian Clinical Criteria (CCC). The experience of a large part of the patient cohort has been that GET has left them worse off due to Post Exertional Malaise, with many ending up extremely ill and bedbound, often for months, and in extreme cases, years.
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?: 
i) The report suggests that making an accurate diagnosis is difficult. It does not explain that diagnosis of a patient presenting for the first time to be diagnosed “has ME/CFS or has not ME/CFS” (inclusion/exclusion) is straightforward for a trained GP using recognised diagnostic criteria, such as the Canadian Clinical Criteria (CCC), clinical presentation, and objective tests such as the standing test for orthostatic intolerance. The issue is lack of awareness of the illness and medical education, as most GP’s have not been provided basic training on ME/CFS; ii) Clinicians will continue to provide unclear treatment so long as the 2002 RACP Guidelines remain their key reference. These guidelines should be officially withdrawn and new guidelines developed that focus on PEM as the core feature of the illness; iii) Clinical guidelines take time to develop, so clinicians will be best served by using existing primers to provide patients access to quality care with the best available medical knowledge. Only 3 sets of diagnostic criteria have PEM as a required symptom: Canadian Consensus Criteria (CCC), International Consensus Criteria (ICC) and Institute of Medicine’s (IOM) Systemic Exertion Intolerance Disease (SEID) criteria. Until we have a diagnostic biomarker, any clinical resource which is recommended must be based around one of these three sets of diagnostic criteria.
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Comments: How could the recommendations be improved?: 
i) The report does not adequately describe how disabling and severe the illness can be, the difficulty patients have managing their PEM, and that many patients experience a 50%, or greater, reduction in their daily functions. Nor is there recognition of severely ill patients who are completely bedbound, who require help with all activities of daily living, and may need tube feeding. Furthermore, the report does not explain how small amounts of excess activity can trigger PEM, which can exacerbate many different symptoms, leaving the patient susceptible to these exacerbated symptoms for a period of weeks, months or years. ii) The report indicates that some 50% of GP’s don’t believe ME/CFS is a biological illness, despite research confirming physiological abnormalities in people with ME/CFS. For these GP’s it is unlikely their patients will receive even basic care. The report should give this significant emphasis, and give a high priority to ME/CFS education and training for clinicians and health workers. Such medical education must be grounded in the biological research and hypotheses; iii) Observation and discussion with patients confirm the highly regarded ME/CFS clinicians rely on one of the diagnostic criteria (mostly CCC) referred to in Q1b), peer-reviewed published research and peer-reviewed research papers for their diagnosis and construction of treatment plans.
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Comments: How could the recommendations be improved?: 
i) Support the Committee’s strategic focus to build Australian ME/CFS quantity and capacity. Particularly their focus on the need for Hypothesis generating research and the need for research collaboration; ii) Traditionally, funding bodies like NHMRC and NIH have only funded hypothesis-driven research, which puts ME/CFS at a disadvantage because of the exploratory nature of ME/CFS research. It is important for the report to acknowledge the need for hypothesis generating research, to fund the needed exploratory work;
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Comments: How could the recommendations be improved?: 
i) Diagnostic Criteria: Strongly support the Committee recommendation to adopt the 2003 Canadian Consensus Criteria (CCC) and the Paediatric Primer (2017) for child and adolescent patient selection for use in Australian research, whilst also recommending that NIH National Institute of Neurological Diseases and Stroke Common Data Elements (CDE) be collected to ensure that previous research studies and those using alternate diagnostic criteria can be readily compared; ii) Support the Committee recommendation to conduct a targeted call for research (TCR) on ME/CFS pathophysiology to allow for hypothesis-generating studies and stimulate the Australian ME/CFS research field by bringing new researchers into the field and allow existing researchers to undertake substantial projects; iii) Given that ME/CFS is acknowledged to be a complex multi-system illness, strongly support the Committee’s view that: “Collaboration is one of the important principles underpinning successful biomedical research, and can facilitate consistency in research design and build capacity in ME/CFS research. Australian research into ME/CFS to date has been limited to small research teams with limited funding and capacity. In order to answer critical questions about the underlying disease mechanisms and pathophysiology of ME/CFS, collaborative research initiatives are required from multi-disciplinary teams.”

Page reviewed: 23 September, 2019