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

ID: 
52
Personal Details
First Name: 
Brett
Last Name: 
Lidbury
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Ok
Comments: 
With the previous paucity of guidance and engagement from scientific/medical/government entities, in general this is a useful document, and covers the primary concerns surrounding progress on ME/CFS. In my opinion, the report does well in addressing the “obvious” points (e.g. concerns about CBT/GET, NDIS clarity), but I feel that there is too much hedging here and there, and hence a loss of clarity and/or robustness around certain priorities. It seems that the committee was trying for too hard for balance, and possibly not upsetting various established positions, to the point where firm direction was not always clear. These broad points (above) apply to the specific question here on clinical care, but also to other agendas concerning the improvement of research and care for ME/CFS.
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: 
The issues, in terms of clinical care provision, links directly to culture within the health professions, which is generally terrible, inspite of new research evidence coming to the fore within the previous decade. To assist here with education and support of clinicians, cultural changes are needed, via firm updated guidelines and collaboration via the various professional colleges. Perhaps the answer is a network of expert clinical centres, with researcher support, to expose clinicians to a new culture of thinking about ME/CFS?
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?: 
There is too much hedging on the utility of GET - CBT as a therapy. This approach, which I believe still dominates the existing (2002) clinical guidelines, has had ~ 20 years to be validated, or not, and as exemplified by the UK-based PACE trial, is not an effective treatment, and can be deleterious for some patients. The time has come to halt this approach to ME/CFS treatment, and in the meantime, conduct an independent, data-driven study to assess whether any benefit to patient symptoms has been detected, and for what type of patient? There is a Sydney-based clinic that specialises in this approach, and it would be very worthwhile if from here, and from similar clinics involved with ME/CFS patients, longitudinal patient data on GET (and/or CBT) could be accessed to conclusively and objectively assess its value, if any, for patient care.
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Disagree
Comments: How could the recommendations be improved?: 
This was not done well, again, due to hedging, and not entirely "spelling out" where efforts are needed to assist patients and their supporting families. The report could have integrated / recognised current Australian research successes more directly to give guidance on the next steps towards evidence-based education for clinicians, required research directions, and current discoveries that can assist in real time. A clear, firm recommendation on longterm funding to the required scale is needed (a traditional NHMRC response to funding will not be effective - it must be strategic and build around established research groups and centres, while attracting new high-level scholars). A number of powerful observations have been published via biomedical investigations, but the lack of funding has not allowed this to increase to the appropriate scale where clear recommendations can be drawn from research results, for patient benefit. The NHMRC has not funded specific ME/CFS research for at least a decade, and that was targeted to one idea only (GET etc), thus the research effort has relied on funding from the Mason Foundation and AHMF who were only able to fund small to medium sized research projects.
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Neutral
Comments: How could the recommendations be improved?: 
Generally good, but please see my comments above. Some firmer advice should have been provided to the CEO (e.g. structure of the research funding to allow large scale studies, re-write clinical guidelines to remove, or to at least place on hold, GET - CBT recommedations, until new evidence is available, following the above-recommended data-driven investigation of longitudinal data). The recommendations, in the details at the end of the report, are useful, but the summaries and key points must be bolder in their recommendations on the course of action to be lead by the NHMRC - CEO. Thank you for this opportunity to comment.

Page reviewed: 23 September, 2019