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

ID: 
97
Personal Details
First Name: 
Elizabeth
Last Name: 
Edwards
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Very Poorly
Comments: 
IMO, the following issues require more emphasis, are unclear, or have been omitted: The serious lack of medical and allied professionals at all levels who are sufficiently educated in ME/CFS to provide accurate and timely diagnosis, and safe and effective care. Some states appear to have more than others. Some may have none at all. GPs don’t know who to refer you to. Left to do own research into specialists and treatments, but may be too sick to do so. For the severely to very severely ill (c 25% of patient population), who may be housebound or fully bedbound for many years, there may be NO access to any clinical care at all. This includes no access to doctor, nursing care, OT, physiotherapy, optical, audio or dental care. Also means no medical monitoring, testing or treatment for any comorbid conditions, such as autonomic/ low blood volume-related heart failure, or chronic illness-induced depression. Disbelief/scepticism from doctors with little or no knowledge of biomedical ME/CFS research. Default doctor belief in some version of a vague ‘bio-psycho-social model’ without any clear hypothesis, research evidence or appropriate patient examination. Belief without evidence, examination or appropriate testing that a mental illness eg depression, whether diagnosed/evident or not, must be sole cause of signs and symptoms. Alternative or coexisting belief, without evidence, that patient doesn’t get enough exercise and has become ‘deconditioned’. [NHMRC has removed offensive material] Effects on frail and vulnerable patients of pattern of disbelief and demeaning/ disrespectful attitude from doctors, and/or finding doctor-prescribed treatments (eg especially GET/exercise based) ineffective or cause serious, long-term worsening of symptoms, may include: Shock and distress Disengagement with conventional medicine/doctors Resorting to expensive non-Medicare funded complementary therapies leading to financial hardship If /when unable to afford these, resorting to self management and self-prescribing Loss of support of family and friends; family breakup; increasing social isolation After many years/ decades, may result in severe depression and /or despair of the system/finding a cure, and suicide.
Comments: 
The main problem is lack of training and inaccurate, inadequate and outdated information: Current Australian Guidelines recommending GET/CBT outdated and dangerous, in light of: - exposure of PACE and similar psychology/exercise-based trials’ seriously flawed design and reporting, which lack objective evidence of author-claimed positive outcomes; - common, credible patient reports of ineffectiveness and harm; and - all recent international biomedical research (not included in any recent international medical symposia/conferences), and must therefore be scrapped. Until new guidelines developed, NMHRC website should not direct doctors to them. Lack of GP education on the existence and use of best, internationally recognised diagnostic criteria, eg the CCC Guidelines (2005), ICC Primer (2012), and the IACFSME Primer (2014), which make accurate, reliable diagnosis relatively straightforward. Lack of awareness of methods of objectively measuring many of patients’ reported symptoms, some of which could be easily performed in GP surgery, eg OI standing tests. The draft report inaccurately suggests objective measures do not exist. Lack of specialist education: No medical specialisation for ME/CFS in Australia, despite high disease burden. Nowhere for GPs to refer patients. Complex, multi-systemic nature of ME/CFS requires specialised training, not covered by individual current specialties that focus on only one aspect, without understanding how they may all interconnect in ME/CFS. Undue emphasis for many decades on research based on various unproven beliefs that describe ME/CFS as largely a psycho-social, and/or deconditioning complaint of patients’ own creation, with hardly any research at all on its biomedical causes and biomechanics, has stymied medical progress and muddied the medical waters for decades, making it difficult for doctors to get an accurate picture of what is actually wrong with their patients, physically, and what may be done to help them. Few doctors aware of current developments in biomedical research, in Australia (eg Griffith University) and overseas (eg Stanford, Harvard, Columbia Universities, also in New Zealand, Japan and Norway) revealing many features of ME/CFS’s biomechanics and suggesting neurological, mitochondrial and immune aetiologies. False assumptions that patients are not seriously physically ill and disabled, along with lack of Medicare reimbursement for home visits and tele-consultations, lead to GP reluctance or refusal to make home visits, even if patients say they are unable to attend surgery. This can lead to patient disengagement from their doctors, with both their ME/CFS and other potentially serious medical issues going undetected and untreated. Following harm from exercise recommendations, patient disengagement and/or being too ill to go back, may lead doctors to assume them ‘cured’, and continue to recommend harmful treatments to others. Possibility of legal liability: Treatment recommendations based on outdated, inaccurate, and unscientific beliefs can and do cause serious, long-term harm eg formerly mildly ill, ambulatory patients becoming bed/ wheelchair-bound. This has been under-researched to date but could have serious legal implications for doctors and/or medical authorities in the future
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?: 
In general, the report doesn't really capture the catastrophic effect that ME/CFS has on the lives of all but the most mildly affected - though even for them, normal participation and success in life can be severely curtailed. For the most severely ill, especially for the older age group who are at most risk of becoming isolated, life can be much like being in jail in solitary confinement, or being held hostage in a darkened room without care or help, or, if unable to talk or move, in similar difficulty to someone with 'Locked-In' Syndrome. It's often referred to as a living death, and patients do report wishing they had cancer, so they could die and at least have it resolved. Or to lose an arm or a leg, if they could only have their former mental and physical energy and functionality back. A US specialist in both HIV/AIDS and ME/CFS says if she had to have one there's no doubt she would choose HIV/AIDS. Unlike with a terminal illness, where sympathy for the patient is naturally high, decades of dreary, unrelenting though fluctuating illness, with exacerbations following seemingly very trivial exertion or stress, can lead family and friends to become frustrated and impatient, and to become sceptical and turn away from their former loved one, unable to cope with an illness that is so little researched and understood. Patients do not have that choice. The report does not accurately represent the recovery rate. Old data used has been superseded in the literature. It's now evident that only about 5% ever recover fully. The varying progression of the disease is also not adequately described: patients can start severely ill, then reach a somewhat milder plateau, or get suddenly worse - usually following events like infection, accident, childbirth, surgery, environmental toxin exposure, period of over-exertion/ return to work, etc. - or they may get gradually worse, for no clear reason. Characterising harms from GET as a 'Community Concern' appears to overlook the mounting biomedical evidence showing how and why exercise can be very harmful and why it is rarely if ever a real cure. Nor does it accurately reflect international specialist clinical and biomedical research opinion where support for the old biopsychosocial models is rapidly crumbling, or no longer exists.
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?: 
Identifying PEM as core symptom of ME/CFS is good, and I agree that research trials must use consistent, stricter diagnostic/research cohort criteria, eg the CCC. Data from past or future trials using lax criteria, especially the Oxford, should not be assumed to represent ME/CFS. Too much research money has gone to waste as a result of conflating 'fatigue' and 'chronic fatigue' with ME/CFS, giving ME/CFS money to other conditions that happen to involve fatigue. Fatigue is one of the commonest symptoms GPs encounter, and can not therefore be taken as in any way representative of the illness ME/CFS. The name 'Chronic Fatigue Syndrome' is not liked by patients and many researchers, because of this tendency to conflate a complex illness with a single symptom - fatigue. Any future exercise-based research MUST include close monitoring and reporting of patients' objective physical responses. It is not sufficient, and is reckless, not to do so, given clear medical evidence of abnormal response to exercise and exertion in ME/CFS. There is anecdotal evidence patients' reports of harm or deterioration have been ignored in trial reporting. This requires urgent and thorough investigation before any further exercise based research is supported. Hypothesis generating research is essential in a relatively new field like ME/CFS. With such a complex, multisystemic disease, there is urgent need to explore possible overarching 'theories of everything' in addition to investigating one or other individual issues. The main problem is the historic shocking lack of funding in general for biomedical research into ME/CFS.

Page reviewed: 23 September, 2019