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

ID: 
92
Personal Details
First Name: 
Alex
Last Name: 
Lubansky
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Poorly
Comments: 
The report underplays the difficulties in getting a diagnosis, with exclusionary tests often leaving the patient thousands of dollars or more out of pocket. It also underplays the variability in care, with clinicians ranging from ill-informed or disbelieving through to well-educated and understanding. This variability leads to significant variability in care, from harmful treatments such as GET through to useful strategies such as pacing. While there is some mention in the report of these factors, they could do with being strengthened to better reflect the reality facing patients. For example, the key point, "Controversial treatments such as graded exercise therapy have created a disparity in approaches and some disengagement between patients and clinicians." downplays the harm that GET causes. The report also doesn't effectively convey the difficulty in accessing care for patients with limited mobility.
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: 
One of the major challenges facing clinicians is that relevant, accurate, helpful information, such as the biological basis to ME/CFS, or useful diagnostic criteria such as ICC, are obfuscated by overstated claims such as the PACE trail or overly broad criteria such as Oxford or Fukuda, as well as outdated, often harmful, guidelines such as the 2002 guidelines. This can lead to confusion from general medical practitioners who do not have the time or resources to sort through the issues in depth, while being confronted with "controversial" (in reality harmful) works based on overly broad, non-representative criteria. While the report does contain some good elements, such as highlighting some of those same issues causing the confusion, it also exacerbates the confusion in parts by overplaying the conclusions of the biopsychosocial or deconditioning model of the illness. Particularly egregious is the key point "The dominant treatment paradigm has assumed that ME/CFS is a condition that may be initiated by a biological process but may be perpetuated or exacerbated by psychological factors", which is presented without moderation or identification of the associated harms from the paradigm.
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Neutral
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 lack of funding in ME/CFS has also been understated, with numbers provided often conflating funding (even supposedly ME/CFS funding) that was diverted to other conditions with related symptoms, particularly "Chronic Fatigue" studies.
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?: 
There is some positive and some negative in the recommendations. The principles, particularly the use of CCC and consumer engagement, are laudable, as is the proposal for a TCR. The biggest concern is that capacity building needs an ongoing, sustained focus to make up for years of neglect, and this does not seem to have been strongly addressed. In particular, the research recommendations seem more likely to lead to a medical researcher in a related disease area "dipping their toe" into ME/CFS research chasing one-off funding, rather than the generation of Australian specialist ME/CFS researchers. Clear statements around an ongoing likelihood of ME/CFS research funding would be more likely to get long term capacity building. Another concern is that, while the use of specific, consistent criteria is fantastic, this won't help if reviewers are selected based on "expertise" that stems from "chronic fatigue" research or overly broad criteria.

Page reviewed: 23 September, 2019