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

ID: 
82
Personal Details
This submission reflects the views of
Organisation Name: 
Bridges & Pathways Institute Inc Collaboration Network
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Ok
Comments: 
We agree that patients are frequently dismissed, experience stigma, delays in diagnosis and lack supportive care to limit their condition. The report does not cover difficulties related to: health service delivery funding issues; the spectrum of ME/CFS patient presentations from moderate to severe, and the lack of funding available through Medicare to access the range of multi-disciplinary services needed to fully manage and limit disease progression of ME/CFS. Difficulties are also caused by lack of disability access of many Medical clinics and funding models. ME/CFS patients have difficulty accessing supportive doctors as most experienced doctors have closed books or have large gap payments making them unaffordable. Many doctors are guided by out-of-date and harmful ‘treatment recommendations’ circulating on the internet which place patients at risk. Few doctors identify ME/CFS as: • a highly debilitating ‘complex chronic multisystem organic/physical condition, with a potential series of underlying disease pathways that need to be systematically investigated over several doctor visits. • a chronic multi-system physical condition with complex care needs that can be funded through Medicare GP Team Care Arrangements, for outcome-focused Chronic Condition Care Planning/Health Care Homes. There are no multi-disciplinary ME/CFS primary care clinics in Australia where large groups of patients are diagnosed and monitored overtime by the same doctors, to build a greater understanding of the condition and the spectrum of presentations and age groups. Further difficulties for patients are: • the lack of medical care patients receive, prevents them accessing Centrelink and Disability services • difficulties caused by conflicting information/advice from different health related Government Departments; including Centrelink and NDIS who both require assessments and standards of management that are not available or covered by services available under health system funding (Medicare) and private health insurance.
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: 
The report addresses the challenges including difficulties in clinical diagnosis, a lack of clarity caused by outdated and discredited information circulating including the 2002 Australian ME/CFS Guidelines, and the problem of ME/CFS health care services overlapping several medical specialties. For us, it is not a priority to develop new Australian Guidelines at this stage because of the current lack of level-1 evidence to support treatment/ management recommendations for ME/CFS. We propose that the diagnosis is straight forward using recognised diagnostic criteria, clinical presentation and some objective measures. (IACFSME, 2014) The three identified documents in the report are adoptable, including International Association for CFS/ME: A Primer for Clinical Practitioners; Frontiers in Paediatrics- Primer for Clinicians; and Guide for Clinicians, Institute of Medicine- Beyond ME/CFS redefining an illness. (page11) While there are limitations, we believe this would address some of the lack of clarity and enable clinicians to identify some of the objective signs, including dysautonomia, sleep disorder, Post Exertional Malaise, two-day bike test for PEM (Hodges, Nielsen & Baken, 2017, NZ); repeat grip test; differences in metabolite detecting, adrenergic, and immune gene expression (White et al, 2012), and Raynaud’s. The report omits emphasis on secondary level ‘health service research’ to translate research into medical care and monitoring patient outcomes overtime. This would enable treatment results to be comparable, and a Health service development quality improvement process towards evidence-based practice. Such research addresses the biggest barrier i.e. the lack of clinicians practice tools for use in daily care.(IOM 2015) In addition, we suggest clinicians need to be alerted to the harm caused to patients by: • not recognising the organic chronic complex multisystem nature of ME/CFS • delays in diagnosis • the range of severity or spectrum of the condition • not recognising Post Exertional Malaise (PEM) • recommending out-of-date treatments
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?: 
For clinical guidance, as stated in question 1a&1b, we support an immediate adoption of the Canadian Clinical Criteria and the International ME/CFS Primer 2014. (IACFSME, 2014) We recommend that practitioners use the multi-system chronic disease management approaches funded by Medicare. Early intervention, with a clear recommendation that ME/CFS is a complex highly debilitating medical condition that requires systematic investigations according to physical presentations. To increase the number of clinicians who do not accept ME/CFS patients, we recommend accredited Clinician Workshops based on the 2014 International ME/CFS Primer, including Australian appropriate diagnostic and treatment algorithms. In relation to research, we suggest, that rather than repeating many ongoing international studies, costing millions of dollars in funding, a better use of limited Australian research funding is to move directly to health service translational research and to evaluate and validate recent research findings for Australian clinical settings. This would be a cost-effective use of e.g. $3million dollars and facilitate fast tracking of improved patient care for the benefit for the patients. To achieve and implement a wider range of ME/CFS research quickly, we recommend to cooperate/fund already established National Australian Universities/Primary Care Institutions that specialise in: 1. Knowledge translation/ translational multi-dimensional health outcome research--- Adelaide University government funded projects for integrating research into health services 2. Health Outcomes Collaboration Research 3. Better Health Outcomes, Chronic disease multi-disciplinary team care provision, PHCAG, 2015 4. Including ME/CFS in already established databases would address the need for common data elements 5. Interactive multi-purpose chronic disease databases monitoring patient’s health overtime. (e.g. Monash University/ General Practice Network MAGNET, 2015). Identifying and funding ME/CFS within these wider National Health Initiatives (already working with complex health issues and patient care) will overcome a major barrier of ME/CFS Myalgic Encephalomyelitis not being acknowledged as a ‘respectable’ condition to research.
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?: 
We agree with adopting the 2003 Canadian Clinical ME/CFS Criteria for research, and establishing an Australian Collaborative CLINICAL and Research Consortium. To be successful clinicians who see patients, researchers and a cross-section of consumers should have equal input. Recognising and addressing the lack of balance between biomedical and health outcomes, health services research and funding models, is a priority. We understand the importance of new biomedical research; however, the biggest gap is the lack of validating/duplicating research findings so they can be used by clinicians. In an international world; delays in translating research are no longer acceptable to patients. Further problems arise because researchers promote ME/CFS as hard to diagnose. This is contrary to patient survey data. Research to understand and evaluate the full spectrum of patients from moderate to severe is essential. This could be addressed by including ME/CFS data in one of the newer technology interactive primary care databases that facilitates consumers and providers uploading of data and generating regular reports to update clinicians. Making health services, health outcome research an equal priority would address the lack of data on the ‘state of ME/CFS in Australia’ and enable gathering of data from • doctors with large caseloads and years of experience • general practitioners, clinicians who actually see patients on a regular basis and monitor them overtime • management programs, diagnostic/treatment algorithms • care plan and allied health referral outcomes • early intervention • agreed treatment outcomes meaningful to patients • the full range of helpful/unhelpful interventions/services used by patients in the private sector (whether mainstream medical, integrated or complementary). Ownership of research needs to be addressed; over the years delays for patients accessing treatments have been caused by researchers wanting to ‘patent’/commercialise potential treatments and markers. Incomplete information and knowledge sharing impacts on the lives and deaths of people living with ME/CFS.
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?: 
Strategic focus 1 • The targeted call for research be extended to health service research and patient clinical outcomes. • The Australian collaborative consortium to include equal membership of clinicians, researchers, and consumers. Strategic focus 2 • Prioritise research opportunities for models of care and health service delivery. • Health service research databases to include funding models and health economics analysis. Strategic focus 3 • Rather than update the current Australian Clinical Practice Guidelines (2002), immediately replace them with the 2014 International ME/CFS Primer http://iacfsme.org/ME-CFS-Primer-Education/News/News-Related-Docs/2014/ME-CFS-Primer-for-Clinical-Practitioners-(2014-rev.aspx (This recommendation is because few research findings would meet the required level-1 evidence in NHMRC Evidence Hierarchy). • Prioritise CPD accredited Clinician Workshops, based on the above Primer. • Identify and evaluate Australian Medicare consistent ME/CFS clinical pathways. • Collaborate nationally through Primary Health Networks with all multidisciplinary providers participating in Medicare Planning for ME/CFS patients. Additional Committee recommendations • We agree with developing Australia’s research capacity through international collaboration, although, our experience is that some highly promoted research studies and participant recruitment may not meet Australian University Ethics Standards. This includes the ownership of patient profiles and genetic information; this needs to be addressed before patient data and biological specimens, including DNA are shared. • We agree with the AIHW collecting prevalence/burden of disease data. • Rather than establishing a biobank at this time, we recommend ME/CFS also be included in one of the new primary care general practice interactive databases identified in the ‘Better Outcomes for people with Chronic and Complex Health Conditions’, PHCAG 2015. (These kind of databases were included in the above ‘Report Recommendations’ because they are designed as a cost-effective way to integrate research and clinical data, analyse data, and provide reports back to clinicians in short time frames to improve care quality.

Page reviewed: 23 September, 2019