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

ID: 
71
Personal Details
First Name: 
Bronwyn
Last Name: 
Caldwell
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Ok
Comments: 
I'm really impressed patient experiences including lack of supportive care, stigma, isolation, delayed diagnosis, misunderstanding, being ignored/dismissed, iatrogenic harm & epistemic injustice have been included. Thankyou. I feel the report needs to have more detail & emphasis on: The needs of patients who are severe & very severe, i.e. house or bed bound. They are unable to access ongoing primary medical care from a GP because there is no program for GPs to visit them at home. After hours Drs refuse to attend appointments for complex chronic illnesses. Most are impoverished as the are unable to work so have to survive on a pension & teleservices rarely have Medicare rebates so are unaffordable. Environmental factors like sun, wind, heat, cold, light, noise, perfumes, cleaning chemicals can all impact on safe medical care as they cause PEM, which can often be extreme and sometimes life threatening. Travelling to, sitting in Drs waiting rooms and sitting up for a consult, and then recovering from the PEM caused is a significant limiting factor, even for those who have more moderate ME/CFS Often their only option for care is the emergency room at the hospital. Also, the six-month delay in diagnosis is detrimental to most, it delays appropriate advise and treatment (sleep management, pacing, rest) at what is often the patient's point of best health and ability to recover in their illness and that could reduce the long term severity of the illness for most. And the lack of GP training on ME/CFS and lack of designated/knowledgeable specialists is a significant barrier to treatment.
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: 
Thankyou for recognising the need for improving the access to quality health services for people with ME/CFS. This is a key lever that can be used to limit the severity and impact of ME/CFS on those who have it and the financial and medical burden of ME/CFS on our society. I feel the report needs to also include & emphasise more about Iatrogenic harm from doctors: They have little understanding how severe & disabling ME/CFS often is for 25% of those who are in the severe, very severe and extreme groups of the illness. Most of the few treating Drs don't ever see the severely ill who are house/bed bound & as quoted in the report, 50% don’t believe in ME/CFS! Home visits and ME/CFS friendly waiting rooms/Drs facilities would eliminate this gap in Drs experiences and ability to treat patients with ME/CFS. Currently Drs are using out dated & harmful information e.g. PACE material in RACGP-HANDI & Cochrane Review of Exercise Therapy 2017. This needs to be replaced by education on appropriate treatment & management protocols & a good understanding of PEM and pacing. Removal of RACGP-HANDI should be recommended They need to be able to give early & accurate diagnosis and treatment for ME/CFS, not chronic fatigue. ICC allows for this whereas Fukuda does not. The report needs to show there are objective measures that can be used as ME/CFS diagnostic criteria, e.g. PEM, orthostatic intolerance & disordered sleep. Drs lumping fatigue, chronic fatigue and Chronic Fatigue Syndrome in to one basket dilutes the understanding of severity, correct diagnosis of and effective treatment of ME/CFS.
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?: 
It's very encouraging that recommendations have been made to provide clinical guidance to NDIS, that consumer engagement requires understanding and flexibility & to use CCC and CDEs in research. When referring to ME/CFS in the report it would be more accurate to describe the illness as a debilitating and disabling, multisystemic complex chronic illness. Because the 2002 clinical guidelines are based on fatigue, chronic fatigue and CFS, they need to be replaced rather than updated as fatigue and chronic fatigue are not ME/CFS. PEM needs to defined specifically for ME/CFS as opposed to being grouped in with PEM in other fatiging diseases and treatments. With ME/CFS it is not only a key measure used by patients and clinicians to find patient's managangable level of exposure to the various elements that exacerbate their symptoms, but when induced it can and does lead to permanent worsening of patient's level of severity and disability which does not happen with other illnesses/treatmenta More attention needs to be paid in the report to Centrelink and NDIS systemically disadvantaging applicants as there is currently incorrect advice given to assessors & medical reports from clinicians who do not understand ME/CFS being used to deny applications that should be approved. This has direct effects on the needs of the ME/CSF community as 75% of them cannot work or earn. Those who are house and bedbound cannot take care of themselves and many of those do not have at home help which they desperately need because they are under 65. Without the financial support of both Centrelink and NDIS and the man hours and equipment provided by the NDIS, incredibly sick people are made more severe and their chances of ever recovering are ruined because they cannot afford to see Drs, they physically can't get there without help, they can't afford to buy or cook food that does not exacerbate their symptoms and overall level of illness, they can't shop, shower, make their bed. Many cannot talk on the phone or use electronic devices either so need help with the everyday general admin of life.
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Neutral
Comments: How could the recommendations be improved?: 
Thankyou for recognising that the current clinical practice guidelines are not adequate. The impact of inconsistent diagnostic criteria for both clinical care and research is made worse by conflation of Fatigue/CF/CFS. New clinical practice guidelines need to be developed versus the current ones being updated. Several organisitions in Australia and internationally, with the help of very experienced ME/CFS Drs are already in the process of doing this. With regards to illness/disability severity levels it is important to note the impact of even mild ME/CFS equals a 50% reduction in functioning.
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?: 
Thankyou for recommending that the burden of disease information be updated, it should help drive funding of more research into cause, cure and treatment of ME/CFS. And for acknowledging that GET is potentially harmful as so much valuable energy and research resources has been wasted in past 10yrs trying to push a therapy that hurts more patients with ME/CFS than it helps.

Page reviewed: 23 September, 2019