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

ID: 
59
Personal Details
This submission reflects the views of
Organisation Name: 
Emerge Australia
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Well
Comments: 
On behalf of the Emerge Australia Committee of Management, we would like to thank you for the opportunity to comment on the Draft Report to the NHMRC CEO on ME/CFS. We would also like to congratulate you on the inclusion of the two consumer representatives, including the Emerge Australia nominated consumer Simone Eyssens; and acknowledge the significant efforts made to accommodate their needs in order for them to participate fully in the NHMRC Advisory Committee. Overall, the committee was very pleased with the report and see it as comprehensive and progressive. Whilst these difficulties are touched on, we felt that more detail could have been provided to highlight just how disabling the condition is and the huge impact of the combination of stigma, lack of clinician training, inadequate and inappropriate treatments, along with barriers to accessing services and support. It is the combination of all these factors that is so devastating for patients. The Emerge Australia Survey (referenced in the report) for example found that 73% of participants felt that a better-informed GP would improve their care, and 54% stated that they were too ill to use services – a real indictment of the current service system. We would like the report to include mention of the high proportion of women who have ME/CFS and the likely contribution that this has made to stigma and trivialisation of the illness. The under-funding of research and patient dissatisfaction with how the funding has been allocated in the past are real issues of concern for the patient community. We would like the report to include the role of patient advocacy in drawing the attention of NHMRC to these issues.
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?: 
Well
Comments: 
We recognise the difficulties facing clinicians in working with patients to identify, clearly diagnose and develop an efficacious management plan for people with ME/CFS. As such we would support any recommendations and endeavours to improve clinician education and capability and agree that this is “a critical element in improving access to quality health service delivery for people with ME/CFS”. As “only half of GP respondents believed that ME/CFS was a real condition”, the challenges facing clinicians and consequently their patients cannot be understated. We would like a stronger emphasis on the way that the misperception of the illness as psychosocial has been a major concern for patients and an impediment to research investment into pathophysiology and aetiology, medical support and quality care. The Emerge Australia committee welcomes the endorsement of the Canadian Consensus Criteria, Paediatric Primer and Common Data Elements in future research. We welcome the recognition of Post Exertional Malaise as a hallmark of the condition going forward. With regard to the physical activity section, we recommend that this section be preceded by a statement about the lack of efficacious treatments that address the pathophysiology of the condition - leading to a disproportionate interest in physical activity and CBT as treatment modalities. We are very concerned about the potential for harm from physical activity programs and recommend that a statement reminding medical and health practitioners to “first do no harm” with regard to physical activity should be included.
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?: 
We are of the view that the research and clinical guidance recommendations do address the specific needs of the ME/CFS community. We commend the ONHMRC for the inclusion of the four principles of consumer engagement, consistency, collaboration and capacity building, and believe these will support better research outcomes in the future. We would like to see included the encouragement of objective measures rather than subjective measures of improvement. P18: Re patients applying for NDIS – the report states: “Graded Exercise Therapy may not be appropriate”. Patients applying for NDIS are usually very unwell and we believe that Graded Exercise Therapy is contraindicated for this patient group.
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?: 
The report provides an accurate representation of the current gaps in research. However, the report could be more explicit about the progress of ideas and research and the importance of future research being in step with international thinking. With regards to Section 2 Background, this section begins with the Targeted Call for Research. In fact, this initiative was preceded by questions in Senate Estimates, provided by patient advocacy groups to (then) Senator Scott Ludlam, who questioned the NHMRC CEO about the amount of funding for research and the appropriateness of the research projects funded. This was widely sourced on social media and was a key trigger for further advocacy.
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?: 
We fully support the recommendation to update the ME/CFS clinical practice guidelines, but note that the dissemination of updated information and training of medical professionals is also essential to changing practice in line with current thinking. We feel the concerns of patients and advocacy groups have been understated in this section of the report, and we are particularly concerned about the current recommendations with regards to physical activity. The committee is of the view that the recommendations - if fully funded and implemented -will lead to more robust, better targeted research and better clinical care. The only exception to this is a concern that the establishment of a biobank may reduce funds available for other research into the pathophysiology, diagnosis and effective clinical care. We would like to see the following correction made: Re: Emerge Australia Survey p17. Document currently reads: “89% of respondents felt worse after increased activity or exercise and that pacing was an effective strategy to manage this.” This is incorrect. It should read: 89% of respondents felt worse after increased activity or exercise. Patients reported that rest, including bed rest (60%) and pacing (58%) were the treatments they found most helpful.

Page reviewed: 23 September, 2019