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

ID: 
51
Personal Details
First Name: 
Catherine
Last Name: 
Lawrence
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Ok
Comments: 
While it is correct in broad strokes, the degree of understatement in this report is extreme. The range of problems includes stigma and disbelief, the lack of any specialist services, the poor education of medical professionals, as well as the sheer difficulty and costs of severely ill people getting to a doctor at all. The ME/CFS community organisations and social media groups report a never-ending stream of misdiagnoses, delayed diagnoses, condescension and dismissal from medical professionals. In addition, the fact that there is no established treatment is a very great obstacle to receiving care, especially when the perniciously counter-productive CBT/GET combination is still recommended in some quarters. Some medications that are prescribed internationally are not available to patients locally, or if so are non-PBS and therefore prohibitively expensive if one can even find a practitioner willing to prescribe them. Low dose Naltrexone, Wellbutrin, and high-quality probiotics are examples. My personal case involved 4 years from onset to diagnosis, including a number of specialist referrals to exercise programs that may have worsened my situation.
Comments: 
As a non-clinician I cannot comment with authority on the experience of clinicians. Based on my experience as a patient and community group member, I suggest that professional education very urgently needs addressing. A decent set of diagnostic criteria would help matters, and at very minimum, a retraction of any advice to use GET. Note that addressing GET under “Community Concerns” implies that this is a concern for patients only, when it is a concern shared by biomedical researchers and clinicians, and these concerns are supported by biomedical research. This is of vital importance for clinicians to know.
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?: 
Again, in broad strokes this is not too bad, but in detail there are issues with emphasis and approach that could be improved. In reference to s5.3.3.1 We do not need to "update" the ancient 2002 guidelines. We want them to be entirely discarded and replaced with something sensible. The Canadian Clinical Criteria seem suitable. In reference to s 5.3.3.2 The interim "range of resources for clinical use" available on the website includes the outdated RACP 2002 guidelines as well as other resources that refer to the utterly discredited and pernicious GET/CBT. This list of resources needs to be more carefully curated to exclude the inaccurate and damaging items. In addition, some items are offline and/or subscription limited which makes them hard for community members to assess. Furthermore, many needs have been addressed only in passing. The difficulty in accessing services by the more severely suffering patients, many house-bound and some entirely bed-bound, needs much more attention.
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 lamentable state of existing research funding has in fact been OVER-stated. Many of the research grants discussed did not, in fact, go to ME/CFS research but to a broad range of fatigue related research including Gulf War veterans, muscle fatigue and post-infective fatigue. I strongly support the recommendation that AIHW should produce a study on the Australian situation, including prevalence and burden of disease. As ME/CFS is not a notifiable disease, this will be no easy task and I would stress that funding will need to be supplied for this work.
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?: 
Studies need to use consistent criteria and absolutely must include PEM to avoid confounding with other kinds of fatigue. A biobank seems all well and good, but funds for actually analysing the data will be imperative. Research on biomarkers is worth continuing. The report suggests that decades of research have not yielded results, but this is incorrect. Those decades of (poorly-funded) research have largely been focussed on the incorrect and stigmatising psychosocial model of the disease. In the last few years, biomarkers have been found by almost every study that looked for them, and diagnostic test seem not too far off now. Strategies for community inclusion and consultation need to take account of the disability levels of ME/CFS patients.

Page reviewed: 23 September, 2019