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

ID: 
78
Personal Details
First Name: 
Anne
Last Name: 
Fletcher
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Ok
Comments: 
Whilst the report does mention that patients experience stigma, isolation, delays in diagnosis and lack of supportive care it does not really address the full scope of difficulties patients face in getting care. This is primarily due to a lack of organised health care services for ME/CFS and a paucity of relevant training and information for treating doctors. Secondly, there is a severe scarcity of doctors who are prepared to see and treat patients with ME/CFS in Australia - both at the GP level and more particularly at the specialist level. Since for the majority of patients this is a protracted illness (and life long in many cases) it should be treated as a chronic illness. It meets the AIHW definition for chronic illness. Then patients might be possible to access proper healthcare services and receive medical and allied healthcare as needed. Many patients feel they are actively dissuaded from returning to their regular doctor (or a new doctor) for a follow up visit since they do not improve and often do not respond positively to suggested "treatments". The importance of this cannot be over estimated. Most severely ill patients simply retreat into a "safe space" such as their own home, becoming isolated, further weakened and incapacitated unless they are fortunate enough to have very strong and enduring family support. Even then they may be unable physically to get themselves to a doctor's surgery. Thus many are "hidden" from view and "lost" to society possibly allowing their treating doctor to believe they have recovered when this is far from the truth.
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: 
Whilst it is acknowledged that these factors represent challenges to clinicians in providing care they are surely able to be overcome with some good will and a more open-minded approach. It is agreed that there is no one specific diagnostic test for ME/CFS and this makes diagnosis more difficult however ME/CFS is not alone in this issue; other diseases are hard to diagnose and there is often overlap in symptoms and biomarkers between clusters of diseases e.g. autoimmune diseases. In the case of ME/CFS expert clinical experience is essential to be able to diagnose the disease. A bigger issue is the lack of professional education on ME/CFS. Then is an obvious lack of training, (interest) and education provided by traditional suppliers of medical eduction such as universities, hospitals, medical colleges and nursing associations. Even finding a clinical interest group or network of doctors interested in the disease is next to impossible in Australia. There has been a lack of academic and clinical leadership in this area. Some suggestions for an interested clinician might be to attend conferences/symposia organised by research centres or patient advocacy groups (usually very poorly attended by medical professionals) or to start up an interest group within an existing society/association or royal college or local network. Additionally there is a lack of agreement or understanding about which medical specialty should look after patients with ME/CFS. If this could be overcome (even if it meant a cross disciplinary solution (eg physicians from infectious diseases, immunology, rheumatology, neuroscience, gastroenterology, sleep specialists etc) then that would help to provide a focal point for information sharing and research. Then clinicians could learn from each other, share knowledge and experience, develop hypotheses for researchers to test, initiate clinical studies and clinical trials). There are some structures (primary healthcare networks etc) which could be utilised to broaden this approach. Finally one has some sympathy for a clinician (who has ben trained to believe that everything can be revealed by the right diagnostic test) and that every interaction with a patient can result in a satisfactory outcome and who finds they are dealing with a complex, prolonged, debilitating and poorly understood illness (that does not necessarily resolve) and that they cannot adequately explain to the patient and for which they cannot provide a prognosis.
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?: 
The research recommendations are welcomed, particularly the concept of making ME/CFS research a priority with a Targeted Call for Research, a greater focus on research into the pathophysiology and aetiology of the illness and hypothesis testing, the building of research capacity, promoting national and international collaboration, the adoption of the Canadian Consensus Criteria and the Paediatric Primer and recommending CDEs. To this extent the recommendations in Strategic Focus 1 address the needs of patients for more and better quality research. However there is no quantum of funding recommended to support the research effort and it is stated that not all the recommendations are within the remit of NHMRC. In the past the same stigma around ME/CFS seemed to infect the clinicians and researchers. It seems with the advances in understanding of ME/CFS being made elsewhere in the world, increased international research funding support and together with application of some powerful new technologies that there is more general interest in ME/CFS amongst Australian researchers now which is encouraging. The recommendations could be improved by being specific about a targeted amount of funding that will be devoted to ME/CFS and the timing for this expenditure.Recommendations should emphasise the need to work collaboratively with leading international researchers (there is no point in rediscovering the wheel). In Strategic Focus 2 (Health services research) the objectives are very worthy and almost no work has been done in this area. However it must be noted that standard methodologies may not work well in this context- mainly due to the fact that many patients are not under the care of the health system or a clinician and they will not be easily found. Certainly research aimed at developing models of care and improved service delivery would be very worthwhile and if successful a huge achievement. The major problem with Strategic Focus 3 is finding the personnel to deliver it- as noted above there is dearth of skilled and experienced practitioners in ME/CFS in Australia. This objective may have to wait until a suitable trained workforce is developed. Concerning Strategic Focus 4 a well run Australian biobank would be an excellent piece of infrastructure and would help attract skilled researchers to the field; AIHW should consult with their equivalent counterparts overseas (especially in the US where some excellent work has already been done by CDC epidemiological studies), showing that the number of people affected and the burden of disease and associated costs are far greater than was expected. (See CDC Dr Elizabeth Unger)
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 was a good summary of existing research (and its funding in Australia mainly from in house or philanthropic funds). There is a notable gap in that much of the research to date has focussed on the recently diagnosed, adult patient population. Whilst they may represent a convenient population to access and represent a more coherent subpopulation they do not necessarily exhibit the true long term effects of the illness. Representatives of severity ill (often highly incapacitated) patients and long term sufferers of the illness need to be included in clinical studies. Moreover a large number of children and adolescents are affected and they are poorly represented in clinical studies. They are particularly vulnerable to negative impacts of the disease because of their age, developmental stage and the impact on their ability to continue their education and the loss of normal socialisation. The uncertainty about their future life and concerns about their lost skills, abilities and capabilities are particularly difficult issues for a young person with limited life experience. Apart from research into the pathophysiology and disease process the key additional gaps are: Lack of evidence of incidence and prevalence in our population; length of illness; long term consequences on health; burden of disease; economic impact on the person and their family; impact on quality of life; degrees of disability experienced; impact on forming relationships per se; impact on siblings, parents, partners, children; co-morbidities which develop and how and why these arise.
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?: 
The recommendations could be strengthened in tone to make it clear that research and clinical guidance into ME/CFS must become a major priority and that notwithstanding the many other competing demands from well funded interest groups for different diseases/conditions that the time has come to face up to our neglect of ME/CFS and address it. Many other disease are already relatively well funded and many of them are better understood providing avenues for research. Recommend that ME/CFS be included as a chronic disease and received the support that other chronic disease receive. Work closely with research funding bodies in the US, Canada, UK, Europe to achieve synergies. Use international referees for research evaluation for funding requests (there is small pool of researchers in Australia in this field and this can create conflicts). Provide funding from NHMRC to facilitate the creation of group of clinical experts who have treated hundreds if not thousands of ME/CFS patients. If necessary bring in experts from the US or elsewhere. Ensure that trainee doctors and nurses are educated about ME/CFS as part of their studies. A number of research groups around the world are working on development of a diagnostic test. Soon some of these tests may be ready for trial. However running a trial in Australia where there is no patient registry, no department in hospitals routinely responsible for looking after ME/CFS patients and no clinical networks will be very difficult. We need to start developing this kind of infrastructure . Otherwise all "trials" will need to be conducted internationally and none will be able to be done here. This would be to the detriment of our patients'.

Page reviewed: 23 September, 2019