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

ID: 
43
Personal Details
First Name: 
Dee
Last Name: 
Sunyata BA MA LLB GDLP
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Very Poorly
Comments: 
The Report fails to emphasize harm from diagnostic incompetence. Patients experience iatrogenic harm from ignorance, humiliation and deterioration, as research shows delayed diagnosis correlates with ME severity. This must be addressed by endorsement of ICC/CCC criteria, new Guidelines, clinical re/education, and less hubris. The Report fails to emphasize accessible care must address inabilities to 1 sit in waiting rooms with bright lights, television, radio or other sound on, or with chemicals / fragrances 2 confirm or cancel an appointment until the same day 3 use toilets in a clinic if artificial fragrances or residual cleaning chemicals are perceptible 4 sustain sitting - may need to lie down (in a quiet dark room) on arrival at a clinic. The Report fails to convey degrees of severity. Despite my previous professional achievements as a lawyer and psychologist, I'm now unable to read much, sustain conversation, clean my home, and on many days to make a phone call or prepare a meal. Furthermore, this feedback has been extremely difficult for me to compile. The Report fails to adequately acknowledge harm done to patients by the psycho-social myth of ME. Intellectual clarity would be served by referring to the competing models explicitly.  The Report fails to acknowledge that the predominantly female gender of patients is also a factor which has contributed to prejudice and poor care. It is not plausible that this severe illness would have been neglected for so many decades if men suffered it in equal numbers to women.
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?: 
Very Poorly
Comments: 
The Report fails to emphasize that clinicians face the following challenges in providing services: / -Diagnosis- the Report perpetuates the absurdity that ME is difficult to diagnose / accurate medical education about the Diagnostic Criteria is essential. // -Severity-- they only see severely ill patients when they are at their best, well enough to attend / they rarely if ever will see ME patients when they are at their most disabled // -Practice- providing a waiting area without bright lights, noise from televisions etc, and chemical fragrances / providing toilets without pollutants in fragrances or cleaning chemicals / patients often are unable to confirm or cancel an appointment until the same day, // -Other- understanding that cognitive and emotional exertion can cause PEM as easily as physical exertion does / PEM can manifest as worsened cognitive or emotional functioning, as well as worse physical functioning / clinician ignorance about DSP eligibility rules leaves many patients living in squalid poverty on $250 per week // -Resources- the HANDI Guide used by the RACGP is misleading at best and should not be used / the Cochrane Review is controversial at best, and should not be relied on / the "PACE" trial has been thoroughly discredited and this should be explained / "GET" and CBT are not supported for ME by any robust evidence // -Guidelines- The recommendation of the Report that new Guidelines be developed is appropriate / They should be immediately, expressly withdrawn, and removed from the NHMRC website / They should be replaced with new Guidelines, not revised / During the necessary development of new Guidelines, clinicians should be referred to CCC, ICC or IACFSME documents / Clinical Guidelines must emphasise that a hallmark of ME is exacerbation of symptoms after exertion ("PEM") - the issue is not what a patient can or can’t do, but how they are impacted in the hours/days following doing more than usual.
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?: 
To accurately address the needs of Australian citizens, the Report recommendations should include /// Funding for research must be limited to that in which participants identified as having ME/CFS have been diagnosed using the diagnostic criteria of the ICC or CCC (as recommended by the US IOM in 2015) / The illness should be referred to using the international convention ME/CFS / Rigorous attention must be given to avoid conflating the symptom “chronic fatigue” with the illness ME/CFS / Rigorous attention must be given to avoid conflating “fatiguing illnesses” with the specific illness ME/CFS / Future studies must avoid the multiple manifest design flaws [NHMRC has removed third party information] /// Guidelines from 2002 should be immediately, expressly withdrawn, and removed from the NHMRC website / During development of new Guidelines, clinicians should be referred to CCC, ICC, or IACFSME documents / Clinical Guidelines must emphasise that central to ME is exacerbation of symptoms after exertion ("PEM") - that the issue is not what a patient can or can’t do, but how they are impacted in the following hours / days after they do more than usual / PEM should be defined in a way which is specific to ME, not to be conflated with any other version of PEM / Developing new Guidelines should be transparent and give weight to information from patients /// Guidelines must / reflect the international discrediting of the [NHMRC has removed third party information] / state that there is a risk of harm to patients from exercise interventions (eg “GET”) / Caution clinicians that Informed Consent is required regarding risks from exercise interventions, including risk of permanent deterioration / Inform that delay to diagnosis increases severity of symptoms / Advise “Pacing” / State expressly the absence of any robust research supporting the psycho-social paradigm.
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?: 
To accurately represent the gaps in exisitng research, the Report should give more weight to (or include reference to) the following / Funding for research must be limited to that in which participants identified as having ME/CFS have been diagnosed using the diagnostic criteria of the ICC or CCC (as recommended by the US IOM in 2015) / PEM should be defined in a way specific to ME (not subject to conflation with symptoms of other illnesses) / Funding should recognise historical neglect / “Burden of Illness” research regarding economic costs and losses to the Australian economy is a very high priority in my opinion / Research should / prioritise replicating existing promising bio-medical studies / distinguish between duration and severity of illness / have regard to existing studies regarding Cortene, Rituimab, Ampligen / utilise statistical methods appropriate to the complexity of variables / use objective outcome measures [NHMRC has removed third party information] / support hypothesis generation and new and emerging researchers // Identifying a “biomarker” which is commercially viable for clinical us is NOT a research priority in my opinion (cheaper to train clinicians so they are diagnostically competent) / Reference to “Chronic Fatigue Syndrome” should use CAPITAL letters on EACH of the THREE words / Reference to the illness should be made using the well accepted international abbreviation ME/CFS.
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?: 
Burden of Disease information is a strategic priority; once costs of disablement are documented, this will drive further research funding / Qualitative research, especially with severe disablement, may be strategic as well as cost effective in generating funding / Funding for research must be limited to where participants identified as having ME/CFS have been diagnosed using the diagnostic criteria of the ICC or CCC (as recommended by the US IOM in 2015) / The illness should be referred to using the international convention ME/CFS / Rigorous attention must be given to avoid conflating the symptom “chronic fatigue” with the illness ME/CFS / Rigorous attention must be given to avoid conflating “fatiguing illnesses” with the specific illness ME/CFS / Future studies must avoid the multiple manifest design flaws of the [NHMRC has removed third party information], eg must use objective outcome measures. / Effective research will need to address disability access issues with travel and waiting areas (light / noise / chemical hyper-sensitivities), memory impairment etc / Ethics require Informed Consent regarding risks of harm from exercise (including risk of permanent deterioration) be obtained in writing from participants. A Biomarker for clinical use, and a Biobank, are not immediate high priorities in terms of minimising disability / Strategic, effective research requires taking seriously the issue of robust, defensible science. The Report should recognise that such science is in the interests of every Australian, including academic institutions. Accordingly it is thoroughly inappropriate that this issue is described in the title of section 4.5 as a “Community” Concern. In fact, integrity in science should be the priority of funding bodies, researchers, clinicians and policy makers. In contrast, the term “community” is a diminutive in this context, and serves to dismiss and minimise the gravity of issues demonstrated by [NHMRC has removed third party information]. Section 4.5 must be renamed.

Page reviewed: 23 September, 2019