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

ID: 
12
Personal Details
First Name: 
Susan
Last Name: 
Hall
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Poorly
Comments: 
The report has not adequately acknowledged that some of the treatments for ME/CFS are based on flawed science. Patients who are dealing with disabling physical symptoms have been given GET and CBT which has caused their health to deteriorate. Clinicians are not in agreement as to what a diagnosis of this illness means or what term to use for it which creates confusion for their patients. Patients are not being given a diagnosis quickly enough to ensure harm is not caused by them doing too much. Bed bound patients are not being able to access necessary medical help because GP's will not go to their homes, the severity of their illness is not being taken into account or how trying to get themselves to the doctor will cause their health to deteriorate. The report has not described ME patients who are severely ill who are unable to be in hospital settings due to noise, light and chemicals as this causes a deterioration in their health. Patients can be misdiagnosed with CFS which can have dire consequences because indications of other illnesses can be missed. The reality that this illness has been the cause of death for some due to increased risk of suicide or organ failure needs discussion. That patients with very severe symptoms are holding onto existence by a thread and need much more help than is presently available.
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: 
The report has not shown why Australia chose to leave the outdated 2002 RACP guidelines in place when internationally there have been much better resources available. Also why so little education on ME and CFS has been made available to our doctors and our medical students. How can clinicians understand an illness that they have not been taught about, this adds to the problems of patients feeling stigmatized and not believed. It is necessary for the 2002 RACP guidelines to be withdrawn immediately because the advice in it is outdated and potentially harmful for patients. Co morbid illnesses add to the challenges our clinicians face when determining the cause behind symptoms and the best treatment approach, also symptoms that fall between specialties that are difficult to tease out. There may be times when protecting a person with ME and/or CFS from energy expenditure may be more important than alleviating symptoms from other illnesses. Its important that the NHMRC does not add to this lack of clarity, any resources based on a false premise should be removed also fewer resources is preferable so that there is less confusion. A recommendation by the NHMRC to have the CCC placed as Health Pathways resource could help alleviate some of these challenges. Also a recommendation for doctors to make use of the Bell scale to determine severity.
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Agree
Comments: How could the recommendations be improved?: 
The Australian edition of SNOMET has CFS listed under Disorder of the Nervous system which is an indication that having ME/CFS sit under the specialty of Neurology would make sense. Its important to have a specialty for an illness to sit under which is presently not the case for ME/CFS. NHMRC could take part in having a review done of the international primers so that it would suit our Australian context, otherwise rewriting the Australian guidelines should be done. There is a urgent need for the 2002 RACP guidelines and the RACGP information to be withdrawn. The IACFSME Primer which uses the CCC should be recommended for use in the interim. The risks of GET needs to be acknowledged. This needs to be spelt out more clearly in the report with more detail about the problems the PACE trail has caused. If the NHMRC put a warning about the risks involved with this form of treatment it would help practitioners take notice and stop causing harm to patients who put their trust in them.
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?: 
It is imperative that more funding is made available to understand the biology of ME/CFS especially the cause of PEM and PENE. We need to know if this is one or many illnesses. We need to continue looking for diagnostic tools and develop a thorough understanding of what ME, CFS, SEID and the many other terms used are describing. Patients need to be identified by the criteria they fit into and the severity of their illness, also how long they have had the illness as symptoms can change as the illness progresses so that comparisons between research can be better understood.. Health Services research needs to include the impact on families when a patient is also the parent. The extra difficulties that patients experience in rural settings needs examination, where data is unavailable researchers should make use of ME/CFS patient narratives, Chapter 20 "Women, Chronic Illness, and Rural Australia: Exploring the Intersection between Space Identity and the Body" in the book titled "Rural Women's Health" edited by B.D. Leipert, B Leach and W.E. Thurston. More research is needed to understand the neurological symptoms of ME and to determine how many patients in Australia meet the ICC criteria for this neurological disease. These patients need to be informed if their symptoms are due to organic damage so that they can make better choices in managing their symptoms and be given clearer advice about the harms of activity.
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?: 
The order in which these recommendations are done is important. what needs to be done first is the actions that will create an immediate change for patients who have been living with stigma and lack of support. The most important action that is required urgently is the withdrawal of outdated guidelines and replacing these with internationally respected resources. The NHMRC website should lead the way in this by not having out of date and misleading guidelines on its website and instead providing links to the CCC and ICC resources, a warning about the harms of GET for people with ME/CFS should also be visible. Educating clinicians and raising awareness for policy makers is also imperative. Then a TCR with a substantial amount of money behind it should go ahead to make up for the many years that ME/CFS has been ignored. This needs to allow for hypothesis generating research so that this illness can be given an opportunity to be understood. A research consortium is a great idea and needs to be linked to research that is happening in the rest of the world. When this is all in place then re writing the Australian guidelines can begin, making use of research that has used reliable methodology. A bio bank needs to wait until these other measures have taken place otherwise funding will be directed at it before these important initial steps have occurred.

Page reviewed: 23 September, 2019