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

ID: 
34
Personal Details
First Name: 
Yeu
Last Name: 
Mak
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Poorly
Comments: 
The report fails to highlight the extent of extreme challenges faced by people with ME/CFS in accessing appropriate medical care. Some are so housebound and/or bedridden that they are unable to physically travel to see a doctor. The report is ambiguous regarding the illness being biological, not psychological as many believe. The report also fails to mention that no medical specialist field has claimed ME/CFS. Cancer patients have oncology. ME/CFS patients have none. Consequently, to try to access welfare services such as the NDIS and the DSP, most patients face extreme challenges, including years to receive a diagnosis, in obtaining the requisite medical evidence to demonstrate their severe ME/CFS-related impairments. As Emerge Australia’s 2018 Health and Wellbeing Survey of Australians with ME/CFS: Key Findings report indicates, the majority of ME/CFS patients (47 per cent) receive under $10,399 annual income or no income. The requirement to navigate an overwhelming maze of disbelieving and/or untrained doctors further exacerbates patients’ financial, physical and emotional stress. This results in a worsening spiral that, as cited by the USA’s Institute of Medicine’s 2015 report, ‘Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness’, contributes to many ME/CFS patients dying of cancer, heart disease or suicide at earlier ages than the general population.
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 emphasise challenges relating to the disease’s multi-system, complex nature and the lack of a medical specialist field dedicated to ME/CFS. The report also fails to recognises that new, up-to-date guidelines reflecting the latest biomedical research findings and including Post-Exertional Malaise (PEM), a hallmark of ME/CFS, are urgently needed to enable medical practitioners to accurately diagnose ME/CFS and provide effective care. The report also fails to recognise the urgency and importance of updated medical training for clinicians about current clinical primers such as the International Consensus Criteria (ICC) 2012 Primer. In particular, clinicians must learn about the 2017 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer since, according to a UK epidemiological study by Elizabeth Dowsett, ME/CFS is by far the major cause of long-term sickness school absences among UK youths. The report does not adequately recognise that current psychosocial treatment largely ignores biomedical research evidence. Furthermore, the report does not recognise the extensive harm resulting from current medical approaches which have an over-reliance on psychological approaches.
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?: 
Impairment severity The report fails to recognise just how disabling ME/CFS can be. Even ‘moderate’ or ‘mild’ cases of ME/CFS often result in 50 percent loss of function and even seemingly minor triggers can substantially worsen a patient’s impairment. The following study has shown that functional impairment of ME/CFS patients exceeds that of Multiple Sclerosis patients (MS). Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls, by Carol Kingdon et al, PharmacoEconomics Open (2018) 2: 381. https://doi.org/10.1007/s41669-018-0071-6 Recovery The report needs to recognise that few patients recover from ME/CFS, as stated in medical literature such as the ICC. Also, the report needs to recognise that many patients, as mentioned above, worsen and end up dying of cancer, heart disease or suicide at earlier ages than the general population. Medical education The report needs to more emphatically highlight that lack of medical education is harming patients and that clinician education must be a high priority. Such education must be fully based upon biomedical research and stop perpetuating the damaging myth that ME/CFS is just ‘in one’s head’ and that therefore Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) provide a cure. Graded Exercise Therapy and Cognitive Behaviour Therapy (GET/CBT) Although a small minority of patients do improve with GET/CBT, the majority of patients do not and even worsen, as demonstrated by the growing body of biomedical research. The report should clearly state that GET/CBT approaches include risks of patient harm. Notably, the USA’s Centre for Disease Control’s website has removed references to GET/CBT as a recommended treatment and similarly, the Health Council of the Netherlands’ ME/CFS Executive Summary Number 2018/07 states that GET/CBT should not be mandatory treatment.
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?: 
Naming of ME/CFS The name, ‘Chronic Fatigue Syndrome’, trivialises the complexity and severity of the disease. And PEM must be recognised as the illness’ hallmark. We need a consistent international definition for the disease that recognises the full extent of ME/CFS’ complexity. Multi-systems view of biomedical research While the report’s appendices list past and current research, it is unclear whether there is any research attempting to map all the known and potential linkages between research areas. Since ME/CFS is a complex disease that affects multiple bodily functions and systems, it is vital that research includes approaches to map these multi-systems linkages to more clearly identify the possible cause-and-effect relationships. Such mapping can also help clarify the relative strategic importance of particular areas of biomedical research. Low research funding led to research gaps The report needs to more clearly recognise that the current research gaps are due to past research funding that is not commensurate with ME/CFS’ prevalence and burden of disease. Indeed, a recent Danish study found that ME/CFS had the lowest health-related Quality of Life score (by a long way) compared with 21 major illnesses including Chronic Renal Failure, Stroke, Heart Angina, Colon, Prostate, Lung and Breast Cancer. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421. Furthermore, ME/CFS patients’ suicide rate is six times more likely than the general population. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)01223-4/fulltext Despite ME/CFS’ higher prevalence and greater functional impairment than Multiple Sclerosis https://link.springer.com/article/10.1007%2Fs41669-018-0071-6, according to email correspondence between ME/CFS Australia (SA) and the NHMRC, in 2017 ME/CFS-related research in Australia received only 1/188 of the funding of MS. This dearth of funding is replicated in the USA where the ratio between ME/CFS and MS research funding is $5:$235. https://www.oatext.com/Estimating-the-disease-burden-of-MECFS-in-the-United-States-and-its-relation-to-research-funding.php
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?: 
Guiding principles Regarding the Consumer Engagement principle, patients must be fully engaged in a genuinely meaningful way at every step of the research process. Furthermore, the NHMRC must measure the ME/CFS program’s success according to ‘outcomes’: how well did the work improve ME/CFS patients’ actual health and wellbeing, not just ‘inputs’, e.g. collaborative research partnerships established. A possible fifth principle is clear governance. Fully transparent research governance is vital to ensure that the most patient-effective and strategically important research is undertaken. Burden of disease Australia’s ME/CFS burden of disease data is seriously and embarrassingly out of date. ME/CFS must be included as its own disease category, not subsumed under another disease such as ‘other neurological disease’, in the Australian Institute of Health and Welfare’s Burden of Disease and Injury studies. This data will be vital in measuring the disease’s patient, wider community and economic impact and help more accurately inform and guide public health policy. Patient diversity Since Australia is a multi-cultural nation, research should include patients from diverse cultural/racial backgrounds, including Indigenous people (to help ‘Close the Gap’), as such research is significantly lacking domestically and overseas. Lack of funding and grant parity ME/CFS biomedical researchers face significant disadvantages when competing for funding against other more mature research fields that have a stronger evidence-base and biomarkers. Since ME/CFS is a recognised ‘upstream pipeline’ to cancer, heart disease and suicide, by improving ME/CFS biomedical research funding, the NHMRC can more proactively reduce the prevalence and associated costs of these causes of death. We urgently need increased, consistent funding over many years. NHMRC must set aside a pool of funds specifically for ME/CFS research to achieve funding parity that reflects ME/CFS’ burden of disease.

Page reviewed: 23 September, 2019