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

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I'm a regular mum who got M.E.
Specific Questions
The report need to note that its important part of Doctors diagnosis and their need to be taking note of where in the disability scale the patient is and providing care accordingly. In the first 6 months being the acute onset Phase their could be Limited to no ability to move the patient to a doctors office and patients to speak, see light, hear. They therefore go with long delays of seeing the doctor because of their level of disability, or without ANY medical intervention, pain relief, diagnosis. The worse the patient's condition the least care they recieve. The report does not list how hard it is to find or afford a doctor who is trained in M.E. as a biomedical disease from a primer like ICC. Also to get patients to doctors for diagnosis suddenly need to afford medicines and/or mobility devices, patients can no longer work and miss work, love ones/carer also miss work to care for the patient to cope with the illness. Patients then can not get doctors certificates, medical reports or doctors to sign NDIS paperwork to apply for help. Even if they do eventually get paperwork and apply for help, the NDIS can reject claims on the basis that patients don’t undergo G.E.T. or that it’s not a permanent biological illness/disability. The report does not mention the devastating effects of not being treated by a doctor in the ACUTE stage for first 6 months of illness especially when it’s a severe case. Not being given a M.E., Diagnosis and care, leads to them left in suffering, which debilitates patients further, temporarily or permanently.
The report does not mention that Doctors need urgently to be given a clear message in an updated guideline that states M.E. is an organic Biomedical disease that is chronic, complex and Multi systematic. This is according to all the current International conferences on the illness and Research that all agree M.E. is physiological disease. The report doesn't mention the current objective diagnostic tools for M.E. Like Post Exertional Malaise can be measured with a C.P.E.T. tests, Orthostatic Intolerance/P.O.T.S. can be diagnosed with a NASA stand test, Sleep Quality and Quantity can be diagnosed with wearable devices and cognitive function can be measured with cognitive tests. The report does not highlight to doctors what to do with a patient in the first 6 months of illness. They are left an patient and they can only tell patients to do G.E.T. about which at best doctors have mixed messages ‘it will either help or debilitate you and well have to see. Go home and reassess in 6 months.’ Patients need care in the Acute stage and are debilitated further by neglect temporarily or permanently without proper care of their Pain, Low blood volume, Orthostatic Intolerance/P.O.T.S. and P.E.M. Sleep Disturbances and G.I. issues. Doctors need the guidelines to follow immediate care with all patients.
Comments: How could the recommendations be improved?: 
The report doesn't state the urgency of the GP update to happen immediately. Doctors have the old guide lines of 'CFS' and that it is a mental illness or P.V.S. that turns into a mental illness and are cured by G.E.T. or C.B.T. is a treatment but this information is false and damaging to the patient. The guidelines need to be updated with the current research findings that a clearly organic disease that needs care and Maintenance medically, not with Occupational Therapy and Psychology. Which is no care at all or worse permanent damage to the patient. The report needs to make it clear that G.E.T. and C.B.T. are not treatments for M.E. and they should be Removed immediately and permanently. There is no clear evidence for them or that they benefit. PACING needs to take the place of these therapies under heart rate monitoring where applicable. GP's need a understanding from new guidelines that Anaerobic thresholds are drastically different in M.E. Physiotherapist [NHMRC has removed personal information] shares about C.P.E.T. tests in ‘After Unrest’ video on Youtube. The report does not mention the unethical push for doctor to withhold information when diagnosing patients of what they perceive as a Mental illness. Doctors are calling it Post Viral Syndrome, which Patients can cure themselves over 12 weeks by G.E.T. and/or C.B.T. Specifically not calling it CFS for fear the patient will ‘have a self fulfilling prophecy’. They use words that the patient doesn’t know on purpose to say they have a mental illness. All of which makes the patient more confused to get the patient to be compliant to G.E.T. or C.B.T. treatment.
Comments: How could the recommendations be improved?: 
Report does not highlight the need to take a measurement of the pain, disability and debilitation of M.E. With in the illness there is a spectrum of disability mild, moderate, Severe and Very severe. And patients can fluctuate wildly from day to day according to their P.E.M. Severe patients sensitive to Light sound or touch lack the ability to describe their experience but it has the ability to be the most painful debilitating condition of all. When interviewed palliative care doctors to M.E. patients they describe it as totally unmanageable pain, even though previously they’d successfully managed cancer, aids and all kinds in the end stages, they never had a condition of this extreme. The report needs to take note Publications like ‘The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).’ https://www.ncbi.nlm.nih.gov/pubmed/26147503 The report Conflating M.E. with C.F.S. is wrong. C.F.S. an unrecoverable name full of stigma and permanently seen as a mental disorder to the general public and Medical community. Media has made sure of the controversy, giving the clear message its a disease you can put on trial, whether it is real or not. Calling it M.E is apt, as there is evidence of brain inflammation from Standfords, Dr. Michael Zeineh. Also, a Japanese research team at the RIKEN Center for Life Science Technologies, in collaboration with Osaka City University and Kansai University of Welfare Sciences published in the The Journal of Nuclear Medicine. Jarred Younger, PhD spoke on “How Brain Inflammation Causes ME/CFS” at the OMF Community Symposium of the molecular Basis of ME/CFS 2018.
Comments: How could the recommendations be improved?: 
The report does highlight some options for research however while the Biobank is a progressive thought, however this disease lacking in every area it need to be in correct priority with how much they fund the disease for research and GP training with the International Consensus Criteria for the immediate needs first. The report needs to note that Research Needs to go to biomedical research and sent only to M.E. under the ICC criteria, not be sent to other illness. Of the $1.6 million research funding listed Senator Scott Ludlam put forward the question why “about ⅔’s of the funding appears to be going into research that however worthy it may be has actually nothing to do with M.E./CFS.”

Page reviewed: 23 September, 2019