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

Personal Details
First Name: 
Last Name: 
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Very Poorly
The report doesn’t explain how difficult this can be for people with ME/CFS. The fact that most doctors don’t believe that ME/CFS even exists, and that it doesn't even have a Specialist Medical group, means it's difficult and even traumatic for patients to find supporting doctor or Specialist. Without a specialty for ME/CFS to belong to (and which specialists can be trained to understand), it makes it almost impossible to get requisite medical reports to access services like DSP and NDIS. The report fails to recognise the medical training short-fall, let alone how this continues into the research area. The prevelence of severe Mecfs will be proven to be shockingly higher than is currently thought to exist. 
 The psychosocial model of the illness has been discredited by biomedical research. The report however, downplays the stigma experienced by patients, and doesn’t explain the role of the previous psychosocial model of ME/CFS and the stigma patients experience. Not recognising this allows the mis-Interpretation to continue in all areas of society. As the report doesn’t clearly indicate that the illness is biological, despite the biomedical evidence being clear, it allows for mis-diagnoses and mis-treatment to continue. This again, interferes with worthwhile medical research. 
Until the obstacles to accessing medical care faced by people with ME/CFS is understood, researchers will continually be pulling cohorts from a less significant patient group based on lower levels of severity. In particular, missing patients who are housebound or bed-bound. Neither the Practitioner Guidelines or the Researchers criteria should be allowed to ignore this group of severely debilitated and disadvantaged patients any longer.
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
Accurate diagnosis is difficult, is what the report is inferring. However, while a biomarker may well help make diagnosis easier, diagnosis is straightforward for a trained clinician to diagnose patients using recognised diagnostic criteria, clinical presentation and some objective measures (eg: standing test for orthostatic intolerance). The issue is medical education, as most doctors don’t know enough about ME/CFS, nor understand what they can do to help patients. So, this directly effects what Researchers need to know and understand in regard to developing treatments. Right now, researchers are doing the heavy lifting without anyone at the coal-face helping out (mostly as there is no communications between the two). The report mentions 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”. The 2002 Australian guidelines are based on the psychosocial/deconditioning model of the illness, and recommend GET/CBT, which have been harmful for many patients because it is actually a biomedical condition affecting metabolism not sickness belief as past studies have assumed. These current guidelines should be withdrawn immediately, as having them still in circulation indirectly endorses them. As does the wording in the report as stated above. The report recommends that new guidelines should be developed, which is welcomed. Existing primers could be used in the interim, so that patients have access to quality care with the best available medical knowledge. Recommended options for the interim included the IACFSME 2014 Primer, International Consensus Criteria (ICC) 2012 Primer, or the 2005 Canadian Consensus Criteria guidelines. An interim resource (or limited list of resources) should be chosen and distributed to health professionals. List of resources for clinicians on NHMRC’s website: The 2002 Australian guidelines are currently included in this list. Given there reliance on a psychosocial model, they should be removed. Key point: any clinical guidelines or primers being recommended must focus on PEM as the core feature of the illness. Only 3 sets of diagnostic criteria have PEM as a required symptom: Canadian Consensus Criteria (CCC), International Consensus Criteria (ICC) and Institute of Medicine’s (IOM) Systemic Exertion Intolerance Disease (SEID) criteria. Until a diagnostic biomarker is found, any clinical resource recommended to practitioners and researchers must be based around one of the three sets of diagnostic criteria listed above.
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Strongly Disagree
Comments: How could the recommendations be improved?: 
The report fails to adequately describe how disabling and severe the illness can be. Mild cases experience a 50% reduction in functioning, whereas the most severe cases are totally bedbound, require help with all activities of daily living, and may need tube feeding. The report also doesn’t explain PEM - how little mental and/or physical effort can trigger an exacerbation, involving an increase in severity and types of symptoms, which can last for a long period of time (weeks, months or years). Due to severe patients (house bound/bed bound) not being included in research or even attending medical services the data being used in the report overestimates recovery rates (and is now inconsistent with recovery estimates in other literature). The report also fails acknowledge that few people recover (to pre-illness state). Whilst some do improve (recover some capacity, but not all) with time, most do not. And some continue to deteriorate over time, which is also not acknowledged. (Definition of Recovery in Mecfs is not one of returning to full pre-illness capacity, but having made a significant improvement in Quality of Life). The report indicates that half of all doctors don’t believe that ME/CFS exists. Education for clinicians must be a high priority. Any Medical education about ME/CFS must dispel the myth that the illness is psychosocial and can be cured with exercise and CBT, and must be grounded in the biological research and hypotheses. We need the clinical pathway to include a medical specialty for patients to be referred to. ME/CFS doesn’t belong to any medical specialty. Without a specialty to which ME/CFS belongs (and about which specialists can receive training), it is difficult to get adequate care, let alone the requisite medical reports to access services like DSP and NDIS. Due to both the lack of up to date guidelines and education, patients are unable to give informed consent to undergo GET treatment. This report should include a statement about the risk of harm from GET, and explain that this is based on research and patient reports.   The report doesn’t mention research nor the high level reports of harm. Describing Graded exercise therapy (GET) as controversial is inaccurate as it implies that this is merely a difference of opinion. Putting the section on 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. It also continues to down-play the significance of the continued pshcosocial belief that patients could get better, if they exercised and that de-conditioning is a factor. One area has been able to quantify in relation to Mecfs, is that even though there is de-conditioning, it does NOT play a role in the severity of the condition.
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Strongly Disagree
Comments: How could the recommendations be improved?: 
Description of ME/CFS in the report- This description positions PEM as the core feature, which is important. It also acknowledges that many patients find the name “Chronic Fatigue Syndrome” to be a poor choice, and that “Consideration of 'fatigue' as mental or physical tiredness is too simplistic to encompass the scope of impairment in ME/CFS. It belies the inadequacy of the vocabulary of fatigue”. There should be a definitive meaning to the differences of 'tiredness', 'fatigue' and 'malaise' in the Mecfs case. Too often the language is a barrier to both medical and research understandings. Research into fatigue and fatiguing illnesses has been classified as “CFS” research, so NHMRC’s actual investment in ME/CFS research is much lower than it claims. It is crucial that funding goes to ME/CFS research (patients who experience PEM), not fatigue or fatiguing illnesses. A breakdown of where the estimated $1.63 million went in funding grants relating to ME/CFS shows that none of the grants were really specific to ME/CFS. They were on a Gulf War veterans, muscle fatigue, post-infective fatigue. The report indicates that no disease mechanism or biomarkers have been found despite decades of research, implying that this may be because there aren’t any to be found. As the field has been severely underfunded, with most of the funding that was invested going to psychosocial research, it is not surprising that we don’t yet have diagnostic biomarkers. We know there are objective physiological abnormalities seen in people with ME/CFS. Biomarkers ARE being identified, but aren’t yet sensitive or specific enough for diagnostic testing. Biomarkers are important and we need more research (and more funding) to identify these.
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Comments: How could the recommendations be improved?: 
Australian burden of disease data for ME/CFS are out of date. It is important for this to be collected, and for ME/CFS to be included again in the Australian Institute of Health and Welfare’s Burden of Disease and Injury studies. This data will help measure the impact of the disease on those living with it, and help guide public health policy. The impact on patients living with ME/CFS in rural locations should also be examined. Rural living requires additional exertion compared to urban living. Short cuts and supports (eg: home delivery, or home care) are less available and medical care can be too far to travel too, even for those with mild cases.  Consumer engagement must take into account the limitations of people living with the illness, and make appropriate accommodations. Once again, our dire situation and severe symptoms have been over-looked. There wasn’t an easy read or audio version of the report, for those unable to read the full report. Whilst the consultation period was 6 weeks (instead of NHMRC’s usual 4), this included the Christmas period, which was lost time. The period of time was insufficient placing unnecessary stress on patients desperate to have better research and treatment outcomes for Mecfs. Noted- the availability of extending the time to make submissions does exist, but it's not made evident enough to those with cognitive impairment. *personal note- due to executive function issues with math and numbers, and my device that does not do word-count, I may have excelled the 300 word maximin. My apologies. Biobanks are expensive, with both establishment and ongoing costs. If a biobank is funded, it should be in addition to a consistent increase in funding for research. Ideally, a biobank would be for samples which aren’t readily available (eg: brains), rather than easily accessed bodily fluids such as blood (as the patient community is engaged in and supportive of research, patient samples are not lacking). What is lacking is the funds to analyse samples. Should a biobank be funded instead of research, the field may actually be worse off.

Page reviewed: 23 September, 2019