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

ID: 
19
Personal Details
First Name: 
Jen
Last Name: 
Temm
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Poorly
Comments: 
The report does not reflect the extreme difficulty of finding doctors and specialists who have an up-to-date understanding of the biomedical nature of ME/CFS and its best-practice management, particularly those who will deliver medical care to more severely-impacted patients who are home- or bed-bound and unable to travel. The stigma associated with ME/CFS due to the outdated belief that it is a psychosocial illness held by many medical professionals further traumatises patients, contributes to a reluctance to seek care, and greatly impacts their ability to seek government services including DSP and NDIS, and educational support.
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 report fails to reflect that diagnostic and management tools for treating ME/CFS are well recognised and clear; this issue centres on the outdated 2002 Australian guidelines which recommend the harmful and ineffective treatments of GET and CBT respectively, its reliance on an outdated and extremely harmful psychosocial model of the illness, and the lack of medical education in this area. New guidelines must be developed in collaboration with the patient community, and the 2002 Australian guidelines removed immediately from the NHMRC website in favour of clinical guidelines or primers such as the ICC 2012 primer, 2005 CCC guidelines or the IACFSME 2014 primer as an interim measure.
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?: 
The report does not adequately reflect the severity of ME/CFS and its impact on patients lives or on their families and loved ones. At its mildest ME/CFS causes a 50 per cent reduction in functioning, and at its most severe patients are bed-bound and require around the clock care. Triggers from mild exertion to external factors such as the weather or a viral infection can greatly exacerbate debilitating symptoms for months or years. The report overestimates recovery rates and fails to acknowledge that for the vast majority of patients, ME/CFS is a lifelong condition. Education on ME/CFS is a high priority and must be based on biological research and dispel the myth that the illness is psychosocial and can be cured with exercise and CBT. Clear clinical pathways must be established for patients from the outset in order to lessen the devastating harms on patients from delayed and misdiagnosis, disbelief and ill-informed advice. The report describes GET as "controversial" which does not reflect the extreme harm it causes the vast majority of patients. The implication that GET is a "Community Concern" is completely inaccurate: support for the therapy is being withdrawn worldwide not just because of patient reporting but due to extensive biomedical 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?: 
The committee's guiding principles are welcome as is the description of PEM as a core feature of ME/CFS and the term "fatigue" as inadequate. The lack of funding for biomedical research is a primary issue; it must be increased particularly in the area of exploratory research as well as hypothesis driven studies, and consistent with the illness burden of ME/CFS over many years to develop the field. The diversion of meagre research funding in the last two decades to support psychosocial research or general fatigue studies is extremely concerning. The impact of ME/CFS on children and adolescents must be prioritised separately and is an area of grave concern as there is very little research on the debilitating and potentially life-long harm on young people whose bodies and minds are still developing. The impact on the rarely-studied severely ill and on isolated rural patients who are most in need of excellent care and supports should also be prioritised.
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?: 
The burden of disease data used in the report is outdated; ME/CFS must be returned to the Australian Institute of Health and Welfare's Burden of Disease and Injury studies to accurately measure the impact of the illness and inform health policies. Biobank funding is important but should not overshadow the more pressing need for biomedical research funding.

Page reviewed: 23 September, 2019