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

ID: 
66
Personal Details
First Name: 
Rita
Last Name: 
DÁgostini
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Ok
Comments: 
The report mentions the stigma patients face but does not recognise that this stigma is a direct result of incorrectly dubbing the illness psychological. Though the pathophysiology of ME is not yet understood, it is a physiological condition as evidenced by biomedical studies. Psychological studies, (as well as being subjective and a waste of resources), can have a negative affect on quality of care, understanding of the condition and increases the stigma and social burden of disease for many patients, while simultaneously preventing any helpful understanding of the condition from developing. Dispensing with the psychological model is an important prerequisite to improving patient care. The severity of the condition is not captured. Some sufferers are unable to leave their bedrooms or houses for weeks, months or even years, and can struggle to complete simple tasks like showering, eating or walking. There are a significant number of shared patient stories and experiences both of the illness itself and the response of doctors to the illness. Even without an evidence based treatment or cure, there are things which can be done now to reduce the social burden of disease by simply treating patients better socially.
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: 
The report mentions the lack of biomarkers and broad diagnostic criteria as primary causes in preventing accurate diagnosis for patients. Making use of diagnosis criteria which specifies PEM (Post Exertional Malaise) as a necessary symptom would improve this. However it is important for medical professionals to understand what PEM is and how it differs from just feeling tired. Clinicians do not have access to helpful information as a result of lack of understanding which stems from a lack of research and a diversion of research into treatments such as CBT and GET which can be harmful. The endorsement of CBT/GET by the current 2002 clinical guidelines is misinforming patient care. The NHMRC should not endorse the 2002 Australian Guidelines. The Canadian Concensus Criteria is preferred. In some cases doctors are not just uninformed but misinformed by past research which has since been discredited. In order to improve patient care and health outcomes many doctors need to be reeducated to dispense with unhelpful beliefs and stigmatic ideas about the nature of ME.
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 ME community requires medical professionals and researchers to listen to the needs of the patient community. This opportunity to weigh in on the NHMRC report is highly appreciated. The community welcomes quality, unbiased research. Please review the recovery data used in the report as it seems unrealistic and may be outdated. It is also worthwhile describing what constitutes 'recovery' in these reports. It is understood few patients ever see a 100% recovery to pre-illness health, though many see a degree of recovery. Deterioration over time is also common and is not mentioned in the report.
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Neutral
Comments: How could the recommendations be improved?: 
The report does not capture the severe disparity in research funding for ME compared to other diseases of similar prevalence and severity. The report mentions this and preempts the argument with the words "patient groups believe", however, funding, prevalence and BOD are quantitative measurements. This is not a belief. ME research is disproportionately underfunded in a considerable and detectable way. Historically, subjective experiments in ME have allowed experimenter bias towards seeing positive results which may not exist as well as a misunderstanding of PEM, which can affect sufferers hour or days after exertion. Objective outcome measures including a return to work or a consistent increase in activity over an extended period of time recorded using an activity monitor would be preferred. Due to PEM, the hallmark symptom of the condition, patients can be active for days and then inactive for days at a time. Subjectively, these periods of inactivity can be interpreted as behavioural. It is important to recognise this interpretation is speculative and can influence research in a misleading direction. Much of the funding for ME has gone towards "fatiguing" illnesses which are not actually ME/CFS but also have fatigue as a primary symptom.
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?: 
Encourage ME to be included in the Australian Institute of Health and Welfare's Burden of Disease and Injury studies. Encourage research to include those on the severe end of the spectrum who are housebound or bedbound. This will require extra effort and attention when designing a study to accommodate those who are extremely debilitated. Update the clinical guidelines and remove CBT and GET as recommended treatments as soon as possible. It is harmful to many patients. It is good to see the Canadian Consensus Criteria and PEM endorsed as a universal diagnostic criteria for research. The ME community is eager to work with researchers, clinicians and educational institutions with the aim of improving health outcomes.

Page reviewed: 23 September, 2019