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

ID: 
53
Personal Details
First Name: 
Karla
Last Name: 
Pusz
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Poorly
Comments: 
The report needs more detail to accurately represent the difficulties faced by patients. Above all else, the hypothesis that ME/CFS is primarily a psychological disorder, that can be resolved through talking therapy and graded exercise, has been disproved, and there is significant evidence ME/CFS is an organic illness. Until diagnostic guidelines are updated to reflect the biological abnormalities of ME/CFS, and medical practitioners are educated about the organic disruptions of ME/CFS, patients will continue to face significant difficulties in accessing clinical care. Other areas the report is lacking in detail are: - The impact of stigma and disbelief on receiving appropriate care/timely referrals/understanding of disability - The difficulty finding specialists with appropriate knowledge, and the added burden of locating specialists who “believe” in the existence of ME/CFS - The difficulty obtaining appropriate medical evidence to support claims for social services (DSP/NDIS) - The difficulty accessing treatment for housebound/bedbound patients (approx 25%); both in terms of availability and cost - The lack of specialists for ME/CFS (both in terms of the number of practitioners, as well as there being no field of speciality to which ME/CFS belongs).
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?: 
Ok
Comments: 
There are challenges faced by clinicians in diagnosing ME/CFS, but the lack of a diagnostic biomarker should not be a significant obstacle if the clinician uses recognised diagnostic criteria, clinical presentation and some objective measures. The most significant challenges facing clinicians in providing care seem to be: 1. The lack of medical education regarding the biological abnormalities of ME/CFS, and 2. The overly broad, outdated 2002 Australian guidelines The lack of medical education manifests as 50% of clinicians not believing ME/CFS is a “real” illness, which obviously impedes diagnosis, management and care. The 2002 Australian guidelines are overly broad (in that they do not specify the hallmark symptom of Post Exertional Malaise, and are therefore likely to capture patients with other fatiguing illnesses), and are built on the hypothesis of ME/CFS is a psychological illness. The guidelines should be updated to include more specific and relevant criteria should be adopted until a diagnostic biomarker is found. Diagnostic criteria that include Post Extertional Malaise as a symptom are: - Canadian Consensus Criteria (CCC), - International Consensus Criteria (ICC) and - Institute of Medicine’s (IOM) Systemic Exertion Intolerance Disease (SEID) criteria. 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”, and refers to the controversy of CBT and GET as treatments, but neglects to specify that this treatment paradigm (also known as the psychosocial model) ignores/disputes biological processes and abnormalities. This has resulted in treatments that disregard biological symptoms and has caused harm to many patients. This treatment paradigm has also been discredited by many researchers and clinicians. Medical education programs should be increased, and include information regarding the biological abnormalities of the condition, strategies for symptom management to improve quality of life, and the potential of harm resulting from GET.
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?: 
The report is conservative, and recommendations do not sufficiently address the needs of the community. The indication that half of all doctors do not believe in the existence of ME/CFS is alarming, deserves more emphasis, and highlights the urgent need for medical education on the biological abnormalities found in me/CFS, to counter the assumption that it is somatic. Describing Graded Exercise Therapy (GET) as a controversial therapy is misleading, as this intervention has been disproved as effective for patients who suffer from Post Extertional Malaise. Research in support of GET does not sufficiently define the patient cohort and has shown to be overly broad. This is not discussed at all, a glaring omission. Also missing is the exclusion of severely ill patients from these studies, and the lack of data regarding adverse outcomes. Discussion of the potential for harm from GET is another glaring omission, and labelling GET as a “community concern”, when scientists from Stanford and Harvard (amongst others) advise it is contraindicated. The following information is not sufficiently outlined: - Illness severity/degree of disability – a mild case results in a 50% reduction in activity, a drastic impact, and severe cases can result in needing assistance with all aspects of daily living. Minor activity can trigger relapses lasting for weeks, months or years. - Recovery – Few people recover from ME/CFS, and prognosis is uncertain; the report appears to utilise outdated data in it’s discussion of recovery. - Lack of medical education – this has implications for clinical care and research and deserves greater emphasis. - Lack of medical speciality – this impedes patients’ ability to access adequate care, and to access social service supports (such as DSP). It also adds a burden to Primary Care Physicians, who lack a clinical referral pathway for patients.
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?: 
The report outlines research projects undertaken to date, but neglects to specify the hypothesis and outcomes of these projects. This leads to the misperception that disease mechanism/biomarkers haven’t been found because they do not exist. The report fails to outline that much of the research undertaken has been in the psychosocial area, which has focused on behavioural interventions instead of biological abnormalities. The report also fails to outline the objective biological abnormalities that have been found, that are not sensitive enough to use as diagnostic biomarkers, but are clues to understanding disease mechanisms. There is also little discussion of the lack of funding provided to ME/CFS, which has necessarily limited research. The limited understanding of disease mechanism means it is imperative to fund hypothesis-generating research; this has been the approach by the Open Medicine Foundation (OMF) in the US, which has resulted in significant gains in understanding of ME/CFS. It is imperative that future research use objective measures, with meaningful clinical changes (e.g. walking tests, return to work/school). The committee’s guiding principles (Consumer engagement, Consistency, Collaboration, Capacity building) are constructive, especially the recommendation to use the Canadian Consensus Criteria (CCC) for research. Positioning PEM as the core feature of ME/CFS is an important step toward building understanding and reducing stigma. It is also important to ensure that funding for ME/CFS is directed toward a cohort that suffers from PEM, rather than “fatigue” or “fatiguing illnesses”. Research looking at Health Services should clearly define the differing impacts of the illness on different patient cohorts, carers, family units and so on. The impact of living in rural locations should also be examined.
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?: 
A Targeted Call for Research and a collaborative research consortium will both progress ME/CFS research. An indication of how ME/CFS research could be more competitive against more established diseases in its applications for NHMRC funding, would be of further assistance. ME/CFS has not been consistently captured through the Australian Institute of Health and Welfare’s Burden of Disease and Injury studies, and as such the estimates relating to the Burden of ME/CFS are out of date. Consistent inclusion and reporting of ME/CFS impact data would help guide public policy and funding allocation. The establishment of a Biobank sounds promising, but given the cost of maintaining the infrastructure, this should be a secondary consideration for funding allocation. Future maintenance costs should be included in the funding structure of a biobank. To demonstrate the NHMRC is truly willing to foster consumer engagement with the ME/CFS community, as outlined in the Guiding Principles, it is important that the needs of the community are genuinely considered and accommodated. This means providing easy read/audio formats of documents, and allowing extra time for feedback (given this community has at least a 50% reduction in function, twice the usual timeframe is probably a minimum accommodation).

Page reviewed: 23 September, 2019