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

Personal Details
First Name: 
Last Name: 
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Very Poorly
Not many doctors understand ME/CFS properly enough to work with the patient population adequately. A lot of doctors don't believe ME/CFS exists and offer to put people on anti depressants rather than trying to understand the illness. This can be quite traumatic for patients. It is viewed as a psychological illness by most professionals and the general public. The report downplays the stigma experienced by patients and doesn't explain how this affects them. The report does not clearly indicate that the illness is biological, despite the biomedical evidence being clear. The report also doesn't cover the obstacles people face when trying to access medical care when faced with ME/CFS. A lot of these people are housebound or bed bound and cannot travel. There are very few doctors available that meet these needs.
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?: 
The report says that making an accurate diagnosis is difficult. This is true as most doctors don't know enough about ME/CFS and don't understand what they can do to help patients. The report recommends that new guidelines should be developed which is also true. These new guidelines must avoid the issues that have existed in previous guidelines where community objections were ignored. New guidelines must be developed in collaboration with the patient community.
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Strongly Disagree
Comments: How could the recommendations be improved?: 
The report does not adequately cover how disabling and severe the illness can be. It doesn't cover how little can trigger exacerbation which can increase symptoms for years. The report uses old data which overestimates recovery rates. It also does not acknowledge that few people recover. Whilst some do improve, many do not. Many also deteriorate over time. The lack of medical education in doctors requires more emphasis as doctors can't begin to provide basic care if they don't even believe the illness exists. ME/CFS also does not belong to any medical specialty which makes it difficult to receive adequate care. Describing GET as controversial implies that there is a difference of opinion about it when there is in fact strong evidence demonstrating an abnormal response to exercise in people with ME/CFS.
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Comments: How could the recommendations be improved?: 
The lack of funding is the primary issue because the reason why no biomarker has been found is due to this. The report suggests that it is because there is no biomarker to be found but instead the field is severely underfunded and most of the funding went into psycho-social research
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Comments: How could the recommendations be improved?: 
Due to many years of underfunding, ME/CFS research is disadvantaged when competing for funding against other diseases that have biomarkers and a stronger evidence-base. We need the NHMRC to set aside a pool of funds specifically for MECFS research. The recommendations for a Targeted Call for Research, and for an Australian collaborative research consortium both achieve this, but we need NHMRC to indicate how to help ME/CFS grants be more successful, to compete for funding against more mature fields

Page reviewed: 23 September, 2019