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

ID: 
5
Personal Details
First Name: 
Allison
Last Name: 
Reilly
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Ok
Comments: 
* It does not adequately show the difficulties accessing quality health care by ME/CFS patients. Finding doctors and nurses that will listen and not judge, especially in an emergency department scenario is extremely difficult. * Finding medical support for those who are housebound or bedbound is even more difficult. I live in a rural area and there is no access to after hours home visits by a GP. GP Telehealth services should be made available for all people who are housebound or bedbound with ME/CFS. * This report does not adequately reflect the stigma experienced by patients when accessing medical care. Even though the psychosocial model of the illness has been discredited, this report doesn't explain the role of the psychosocial model of ME/CFS on the stigma patients experience. * This report does not clearly indicate that the illness is biological, despite the biomedical evidence being clear.
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: 
* This report suggests that it is difficult to make an accurate diagnosis. Whilst a biomarker may well help make the diagnosis easier, diagnosis using recognised criteria is straight forward for a trained clinician using clinical presentation and some objective measures (eg. standing test for orthostatic intolerance). * The report does not emphasis the need for medical education so that more GPs and Physicians are able to accurately diagnose ME/CFS. * The 2002 Australian guidelines are outdated and are heavily based on the psychosocial/deconditioning model of the illness. They also recommend Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT), both of which treatments have been heavily discredited and are potentially harmful. Entirely new guidelines should be developed. * Whilst new guidelines are being prepared, existing primers should be used in the interim. Recommended primers include the IACFSME 2014 Primer, International Consensus Criteria (ICC), or the 2005 Canadian Consensus Criteria (CCC) guidelines. * Any clinical guidelines or primers being recommended must focus on Post Exertional Malaise (PEM) as a core symptom of this illness.
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?: 
* This report does not describe how disabling and severe ME/CFS can be. Even mild cases experience a 50% reduction in functioning with the most severe being totally bedbound and requiring help with all activities of daily living. * This report uses old data which overestimate recover rates and does not acknowledge that few people actually recover. Whilst some do improve with time, many do not, and some deteriorate over time. * If half of all doctors don't believe that ME/CFS exists, despite physiological research, then this is a problem that needs to be emphasised. Education of doctors, nurses and other medical staff needs to be a priority to dispel the myths that ME/CFS is psychosocial, can be cured through exercise and CBT, and that there is the real potential of harm from these treatments. * Describing Graded Exercise Therapy (GET) as controversial implies it is merely a difference of opinion. There is strong evidence from both patient reports and physiological research demonstrating an abnormal response to exercise in people with ME/CFS and that GET causes harm to the majority of patients. In the interest of informed consent, patients need to be informed by their doctors of the potential of harm before undergoing such treatment. * The evidence in support of GET is crumbling. [NHMRC has removed third party information] The Cochrane exercise review is the subject of a complaint which is currently being investigated. The research itself is based on unblinded trails using subjective outcomes. GET trials typically show modest improvement on subjective measures, but does not demonstrate significant change when objective measures are used. This suggests that GET is not only harmful for most, but also ineffective. These trials also do not include people on the more severe end of the ME/CFS scale ie. housebound and bedbound.
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?: 
* Lack of funding for biomedical research is the primary issue. We need increased funding and consistent funding over many years to help move the filed forward. * The report indicates that no disease mechanism or biomarkers have been found despite decades of research, implying that this may be because there are not any to be found. To date funding has been near non-existent and any funding available went towards psychosocial research. It is not surprising that a biomarker is yet to be found. Biomarkers are being identified, but a lot more funding is required to progress these to diagnostic testing. * Few ME/CFS trails use objective outcome measures (ie. return to work, six minute walking test etc). Unblinded trails using objective measures are the gold standard. Any research grants should be focused on trails with outcome measures that are meaningful to consumers and represent clinically meaningful change in consumers’ lives. * To date 1.63 million has been spent in funding grants relating to ME/CFS. None of these grants were really specific to ME/CFS. They were on Gulf War veterans, muscle fatigue and post-infective fatigue. It is critical that all future grants go to ME/CFS research using a recognised criteria where PEM is a mandatory symptom, not fatigue or fatiguing illnesses. * Research should also include the impact of living with ME/CFS in rural locations. Rural living requires additional exertion compared to urban living. Home care and home delivery are less available and travelling to access medical care can be difficult.
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?: 
* Increase the grant competitiveness against other conditions when competing for funding by setting aside a pool of funds specifically for ME/CFS research. * Update the burden of disease data for ME/CFS. This indicator is an important measure of the impact of the disease on those living with it and help guide public health data. * If a biobank is to be funded, it should be in addition to a consistent increase in funding for research. Ideally a biobank would be for samples which aren't readily available (eg. brains) rather than easily accessed bodily fluids such as blood.

Page reviewed: 23 September, 2019