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

ID: 
84
Personal Details
First Name: 
Dave
Last Name: 
Long
This submission reflects the views of
Please add further information: 
Person with 21 years of experience with ME/CFS, with past experience in both patient support and advocacy
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Poorly
Comments: 
300 words is insufficient to cover the issues in any detail, but in summary form (please contact me if more detailed notes are helpful): - Poor screening by clinicians of people with ME/CFS for other conditions, even when physical abnormalities are present. - Insufficient weight placed on patient experiences, which bear no small responsibility for the failure of the 2002 RACP guidelines (to which it was clear to patients at the time that they weren’t helpful, something borne out in practice since). Paying attention to patient symptoms, and particularly to patient responses to clinical care, is essential. - Unbalanced weight placed on research for GET relative to other research. Even in the results of the original authors, only 22 per cent of people in the GET group recovered, yet with a 78% failure rate many clinicians still see GET as a way to cure people with ME/CFS. - The use of distancing language to reduce the weight placed on patient experience, which is also an issue in the report, where pacing is described as ‘patients describe’ while GET is presented in far more direct language (despite the PACE trial findings, for example, relying heavily on patient self-reporting). - Clinicians can ignore psychological assessments by multiple professional psychologists and defer to their own judgement, despite a lack of expertise in the field, assuming psychological issues where none exist. - The report is not clear on the harm inflicted on people with ME/CFS by the application of GET and other approaches in recent (and more distant) years. That one of the challenges patients face is that seeing a clinician runs a significant risk of a worsening in symptoms if their advice is followed (which, in a workplace health assessment context can be something that is very difficult for a patient to avoid).
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: 
While it is not possible to provide informed commentary on this point, the lack of clear diagnostic tool (for example, a set of check boxes for symptoms with guidelines to assessing different patterns of symptom presentation) as one of the key challenges facing medical professionals in dealing with ME/CFS is likely to be well identified. In the context of GPs and specialists often doing their work in 15-60 minute increments, providing clear steps to be taken and forms that help the information gathered during these steps to be collected and interpreted will help reconcile the complex nature of ME/CFS within the structure of most GP work.
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Strongly Agree
Comments: How could the recommendations be improved?: 
While it may just be institutional jargon (so potentially nothing to worry about), one thing that did seem a bit odd was the description of research as ‘hypothesis generating’, rather than the other way around – the hypothesis (and there are no shortage of these when it comes to ME/CFS, and most of them, including GET and Pacing, could do with more testing) should be the start rather than the end of the research. At least when I was taught it, the scientific model involved putting forward a hypothesis and testing it through research, rather than doing some research and coming up with a hypothesis. By effectively and scientifically testing existing hypotheses, it will lay a foundation for further research based on a better understanding of the various ideas relating to both pathophysiology and treatments, but a focus on coming up with more ideas (hypotheses) may be premature given the shortage of testing of the many ideas awaiting rigorous scientific testing.
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?: 
While this may be a controversial point, as far as I am aware there is no reputable research that addresses the question of why people with ME/CFS have been treated so poorly by medical professionals for so long. Clearly, any research into this would need to be undertaken delicately, with an eye to focusing on getting positive outcomes in the future rather than playing a blame game. Determining the weaknesses in training and/or culture in Australia’s medical system that have led to these results is likely to produce better outcomes for both clinicians and people with ME/CFS. Further, it’s highly likely any useful action taken from any such analysis would have ramifications far beyond just people with ME/CFS. On a similarly sensitive note, as far as I’m aware, no research has been undertaken in Australia into the harm done by past and current approaches to treating ME/CFS to patients. The purpose of research such as this would be to underline the importance of doctors not to follow outmoded and harmful methods for treating and managing ME/CFS, by giving them a clear understanding of the costs of their behaviour both on their individual patients, and society and the economy more broadly, not to mention the reputation of medical professionals in Australia. However, while this would be useful information to effect cultural and methodological change in the medical profession, with the benefits this would bring to patients and doctors alike, this would involve much higher risks of being seen (or, worse, undertaken) as a ‘witch hunt’, and if investigated should be done with the utmost sensitivity and a clear focus on moving the medical profession forward, rather than blame.
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?: 
The broad thrust of the research and clinical guidelines are sound, relevant and very welcome. All of them are very important, but the most important is possibly the updating of clinical guidelines for practitioners. However, while it is not surprising, section 5.3.3.1 grossly understates the distance between clinicians (in general - there are some that are handle ME/CFS well, but there is no small chance that these are still, in 2019, the exception to the rule) and patients, and the causes for this (it’s not the ambiguity over the management of the condition that has caused mistrust, it’s the harm done to patients by inappropriate treatments, sometimes combined with poor clinician critical thinking and communication skills, that has caused this rift). Given ME/CFS afflicts patients for many years and often decades, any engagement strategy will need to address and heal the damage that has been done by Australia’s medical institutions [NHMRC has removed third party information], as many of the patients that will be seeing clinicians based on any new guidelines will be the same patients that have had to survive in the face of the difficulties introduced by their clinicians in the past.

Page reviewed: 23 September, 2019