NHMRC Public Consultations

Skip Navigation and go to Content
Visit NHMRC website

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

ID: 
33
Personal Details
First Name: 
Sally
Last Name: 
James
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Ok
Comments: 
The report is a great improvement on the current Australian situation. However it fails to emphasise the heterogeneity of symptoms and disease progress. The estimated 25% of people with ME/CFS who are bed-bound or housebound, especially those unable to afford private health insurance, have extreme difficulty accessing care from medical and allied health practitioners. While there is no medical specialty covering ME/CFS, many of the most experienced physicians are integrative practitioners whose fees are unaffordable for many. Because current guidelines for DSP and NDIS rely on the now largely discounted psychosocial model using GET and CBT, people with ME/CFS are frequently prevented from accessing the support they need to facilitate their ability to contribute to society.
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: 
While diagnosis is difficult due to the lack of a biomarker, effective management of the disease is possible and is well documented by various international sources. Clinicians receive minimal education on the illness and the outdated Australian guidelines often inhibit less well-informed general practitioners from providing appropriator care to their ME/CFS patients. It is critical that any updated guidelines identify Post-Exertional Malaise (PEM) as the core symptom of the disease and provide information on diagnosing and managing this, along with other symptoms. Prior focus on the now discredited psychosocial model of the illness has been harmful to many patients, and has impeded progress in managing the illness. Medical education about ME/CFS for those already practising and for current students is essential to improve care and enable patients to achieve t maximum functionality.
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Neutral
Comments: How could the recommendations be improved?: 
The recommendations need to acknowledge how disabling the illness can be, and how easily relapses can be triggered. The report states that GET is "controversial". This assessment overlooks the increasing volume of data indicating that GET is harmful to most people with ME/CFS. Researchers and medical practitioners in Australia and overseas have expressed concern that the current evidence of a physiological basis for the illness mean that GET, based on the psychosocial model of the disease, has no place in management today.
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?: 
While ME/CFS can be difficult to diagnose, it is essential that any new funding for research be channelled towards those who actually have the illness ( i.e. have PEM as a core symptom); currently there have been reports of under- and over-diagnosing. Research must include the estimated 25% most severely affected.These people are often housebound or bed-bound, making their participation in research difficult, but not impossible. Research funding should include extra monies to access these people, and those in rural and regional areas, for biological testing such as blood samples or MRI, or evaluating response to symptom management such as pacing and/or heart rate monitoring. Research participants should be culturally diverse, including those of Aboriginal and Torres Strait Islander background. Any research should have objective outcome measures, and ensure that criteria for inclusion are appropriate to include those with a range of severity, and not extrapolate results for those less severely affected to those with severe illness. Research should be conducted by those with a variety of medical and allied health backgrounds, preferably in a multi-disciplinary setting.
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?: 
It is difficult to see how ME/CFS can receive adequate funding for research without underlying data on prevalence and disease burden. It is essential to avoid 'reinventing the wheel" by replicating sound overseas practices,while developing local expertise in research and management with sound evidence-based footing. The development of a clinical pathway must wait until the disease is better understood, as it risks limiting those with less common symptoms from accessing appropriate care.

Page reviewed: 23 September, 2019