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

ID: 
18
Personal Details
First Name: 
Nola
Last Name: 
Miles
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Ok
Comments: 
Very much Understates difficulties faced by ME/CFS patients. Most Gps do not understand the symptoms or diagnostic techniques, other specialists do not understand the interconnection between symptoms of ME/CFS and their own specialities. This causes difficulties in prescribing medication and other treatment suitable for ME/CFS as well as co-morbidity treatments. Stigma, lack knowledge and disbelief are rife. Not many medicos have the overarching knowledge of how it affects all parts of the body. Most Gps put us in the too hard basket and don’t really want to deal with us. Having to find a supportive GP is hard as there is no real place to start the search. Pot luck/GP ‘hunting’ when you are severely unwell exacerbates the situation. Gps want to send you to a specialist (no training for ME/CFS so this is impossible - no ME/CFS specific specialists.) Getting medical certificates for absences at work or dealing with Centrelink/NDIS is almost impossible. If you don’t get better it is somehow your own fault. Obstacles such as being housebound or bedbound or inability to get to facilities is a huge problem. Once at facilities there are issues surrounding access and chemical sensitivities, lack of suitable waiting places i.e. ability to lie down There needs to be a care facility that caters for those with CFS, their specific needs and a ‘one stop’ shop for all tests whilst catering for a severely ill person Health professionals should stop blaming the patient. Admit their limited knowledge of this field and work WITH patients for better outcomes. Gps need to know that some tests are already known for ME/CFS looking into things such as natural killer cells, standing tests for POTS, Relief can be obtained with certain treatments Lower tolerance for normal drug doses.
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: 
Again it understates the challenges facing clinicians . Gps have to have a wide knowledge of all conditions presented to them. ME/CFS is so complex that it takes longer than the standard medicare timeframes to sort out the complexities of the symptoms. GPs lack education into ME/CFS and lack of diagnostic markers make a difficult task harder. What little knowledge they have is often out of date, based on unproven theories and often can do harm to the patient. They lack the ability to refer to a ME/CFS specific specialist. They need to know there are things they can do for patients. They need to know that this has a biological basis, genetic issues, metabolic issues, energy problems at a cellular level. Symptoms can affect all parts of the body from flu like symptoms, unrefreshing sleep, hypersensitivity to light and sound, Brain Fog, Orthostatic intolerance, Gastrointestinal issues and chemical sensitivities but the hallmark is PEM. Pacing is not GET. Payback is real. They need a specific category to place ME/CFS in their records. They need WHO to openly and clearly classify ME as a serious chronic complex and multisystem disease.
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Agree
Comments: How could the recommendations be improved?: 
Whilst the report goes some way to a change of the views that have emanated from the NHMRC in the past there is still some way to go. Understates how disabling and severe the illness can be. - how unpredictable the relapses are. Severe increase in symptoms can happen with no obvious reason with patients becoming bedbound for an indeterminate time. This uncertainty causes stress and an increase in symptoms – a vicious circle. Recovery is also indeterminate and relapses can last for years and years. Proper training in diagnosing ME/CFS under the Canadian Consensus Criteria would assist patients in getting their needs met sooner – more appropriate symptom relief and understanding of how symptoms affect living. Understanding symptom relief processes and education of Gps and other specialists would benefit everyone concerned. A new speciality should be developed focusing on the complex needs of those with ME/CFS. GET and CBT need to be removed from any treatment documentation. A new set of Australian guidelines based on the vast array of current biological research and importantly after consultation with consumers needs to be published ASAP. For an interim measure adoption of the CCC or International Consensus criteria should happen. It must be clearly stated in all documentation that this is not ‘deconditioning’ or psychological in origin. Patients have been harmed by the impression many Gps and specialists in other areas have that we are malingerers and simply need to ‘get over it’. The old guidelines need to be removed altogether. Recovery rate data needs to be investigated and research needs to be updated. Fewer people recover than is currently recognised. To help bring ME/CFS level with equally disabling conditions, significant capacity building for community based organisations such as Emerge Australia Inc -which is currently the only nationally based support organisation that individuals can belong to -to provide initial support, information and general community and health professional education.
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Agree
Comments: How could the recommendations be improved?: 
There are positive steps in this report by including consumers and researchers who are studying the biological nature of the illness. We need consistency in research and criteria used for diagnosis. The previous Australian Guidelines need to be removed altogether. We need to draw together all the researchers from all over the world to see similarities – this could lead to major moves forward in the understanding of causes and treatments, Impact on adults and children/adolescents seems to have a different manifestations so these two should be studied separately. Lack of Gps and other health professionals in regional Australia should be considered, As many patients are too ill to travel even small distances consideration for how to solve this problem of remote and regional patients need to be considered. Technology should be explored. We need a focus on funding ME/CFS for exploratory work to find out causes, and a large ME/CFS fund specifically to get researchers interested in the field. Biomarker studies should be encouraged so as to gain a diagnostic marker/or markers more quickly. ME/CFS should be clearly differentiated from Chronic Fatigue (a symptom of many illnesses) and other fatigue states. Trials and research which uses self evaluation as the outcome should not be given weight. Objective and measurable outcomes are needed Research into the effects on wider family members who are effectively carers – even children are unpaid unrecognised carers. ME/CFS needs its own category in hospitals and reporting classifications. Any Biobank funding should be in addition to the additional research funding.
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Agree
Comments: How could the recommendations be improved?: 
We need a new and updated burden of disease report. Years of underfunding and mis-allocated funding into general fatigue states has left me/cfs chronically under researched. Research into ME/CFS needs specially allocated funding. Researchers into biological basis should be openly encouraged as in the past they have been discouraged from applying due to the lack of success for applications into biological bases. There will be an issue with the new review panels– if the new panel is from the biological researchers in Australia and these same people will be applying for the funding- A conflict of interest will arise as they are also being encouraged into collaborations and consortia. How will this be reconciled? Will the review panel members need to be from the oversea ME/CFS research community? How will ME/CFS researchers be able to compete against already well established and entrenched disease research. Notwithstanding the issue of how few researchers there are in Australia, the previous review/expert panel members should be retired and a new panel established. The perception currently to the general consumer seems to be that the previous reviewers for unclear reasons, whether ignorance or negligence have never managed to identify the difference between ME/CFS and general fatigue states even though there is a groundswell of research showing just that. They are still relying on outdated, unproven ideas that increasing activity will ‘desensitise’ the body. This perception needs to change - by changing the reviewers.. Continue to work with the consumer reps who have obviously done a superb job in updating the NHMRC on latest research and developments.

Page reviewed: 23 September, 2019