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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: 
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
The report does not properly emphasise or articulate the extreme nature of this problem – This patient cohort is presented with the multiple difficulties in receiving clinical care including: • ignorance of the condition, denial of the condition, arrogance, trying to find something that is not there, misdiagnosis, unnecessary trips to specialists, referrals to inappropriate or substandard specialists • difficulty accessing expertise or receiving recommendations - No recognized ME/CFS specialists • no structured pathway for clinical care • no standardized methodologies • the inherent belief by clinicians that it will simply get better • a system structured towards quick fixes with well-defined illnesses and well researched medical/pharmaceutical interventions – leaving ME/CFS in the too hard basket • no incentive to deal with patients with complex needs – Medicare not geared to comprehensive and complex conditions that require a considerable amount of clinician time • lacking in acceptance by a considerable number of GPs and specialists in all fields • poor levels of understanding from clinicians – (my experience is that patients and carers have better knowledge but arrogance and ignorance prevail. • costly • difficult to access – whilst finding understanding and expertise and getting to appointments is difficult in metropolitan setting - regional patients are in very difficult situations. • The toll of accessing appointments is financially costly but also physically costly – one appointment (travel, parking, waiting in reception etc) may require several days for a patient to recover • forces patients towards costly (sometimes unhelpful) alternatives – ‘fringe medicine’ – they become easy prey for providers of anything if those providers show acceptance/understanding/potential cure for the condition • All the above issue highlights a clinical environment that is detrimental to recovery and cruel. This in many cases exacerbates the problem for patients rather than helping. A list or register of suitable Medical Practitioners and specialists would address some of the issues identified above.
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?: 
The report needs to stress the neglect that this area has suffered over many years and as such a greater need and urgency for Medical practitioner education as a matter of priority to prevent further suffering and to ensure the medical profession has knowledge and that there are specialists in this area. The issue is also an attitudinal one - one that research and clinical guidelines need to influence. Whilst a complex illness a defined clinical pathway could be simple such as: 1. diagnostic exclusion of other causes, 2. diagnosis of ME/CFS 3. identification of comorbidities – well defined lists are available – (refer Frontiers in Paediatrics - Initiating Care of a Patient with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 4. management of symptoms Clinical Guidelines The report should include the recently released - Frontiers in Paediatrics - Initiating Care of a Patient With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) [published: 23 January 2019 - doi: 10.3389/fped.2018.00415] - it is probably the best guidelines I have come across - just in front of ICC. If all GPs and specialists could simply read and understand this one document of several pages it would save: • 1000s of patients conditions declining further • millions of dollars in wasted diagnostic testing, patients time, Medicare costs, economic costs etc Research could target the level of baseline knowledge or lack there of amongst clinicians - this would identify how much work needs to be done in education
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Comments: How could the recommendations be improved?: 
Exercise: There will be enough comment on GET and the negative impacts so I will simply point out that we should not throw out the baby with the bathwater - 'reconditioning' is important and how this is managed and carried out is critical and we need a better understanding of what is going in regards to the biochemistry. Burden of Disease – Need to determine the best way to urgently update the data – I would like to see a recommendation that the condition is both reported on (whatever form this might take) to gauge prevalence etc Research and attitudes will be further driven by DATA – • Numbers with ME/CFS, • Recovery rates • Age/Gender/ethnicity/etc profiles Whilst potentially out of scope this community need more clinics – in the same way that cancer and other diseases have a dedicated specific conglomeration of expertise. The pattern we have experienced in 15-20 minute GP consultation followed by several months wait to see a specialist – who only specialise in one element of the condition is not good for anyone. Statement Page 15 - 4.4.2 last Para – Given the information …… (it would appear) remove .. that estimates of Australian prevalence…… would benefit from being updated – should read - need to be updated
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Comments: How could the recommendations be improved?: 
The committees guiding principles are welcome and the involvement of the extensive knowledge, experience and expertise of patients and carers is critical. To ensure better understanding regarding the debilitating effects and increase awareness and response from Medical profession and Social/disability assistance I would like the committee to consider research/clinical guidelines established that the condition is catergorised - for example: Category 1: Mild Symptoms of PEM – able to continue with work/studies etc with minor accommodations Category 2: Mild to Medium – continue with a minor level of work or study Category 3: Multiple Comorbidities – Housebound - only able to do minor tasks Category 4: Multiple Comorbidities – Housebound – only able to do a very limited amount of minor tasks Category 5: Bedbound and requiring assistance with nearly all daily functions Page 6 - Key Points 4th dot point should include - Developing Clinical practice guidelines has been impeded by: • lack of interest, knowledge and impetus from the Medical profession
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Comments: How could the recommendations be improved?: 
Needs to be a real emphasis on research not just driven by hypothesis but based on observations and experience to drive some quick wins. Biobanks - it seems that there could be much smarter ways to do the same thing - eg patients will end up having numerous blood tests through the pathology providers - if there was simply a way to consent on the form that your sample could be used for research it would provide a wealth of patient data which does not need to be specifically collected

Page reviewed: 23 September, 2019