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

ID: 
88
Personal Details
First Name: 
Else
Last Name: 
Gingold
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Ok
Comments: 
It is a start and as such is to be greatly appreciated. The report does not adequately describe the severely incapacitating nature of the illness.The word 'debilitating" is not strong enough to describe how totally incapacitated sufferers feel when they are severely or even moderately affected .It also does not adequately describe the feeling of sickness caused by the many symptoms.The psychological impact of stigma and dismissal needs to be highlighted .After humiliating experiences with health care professionals,sufferers may feel unable to seek help elsewhere.. Lack of recognition of these difficulties leads to a lack of managable access to medical and allied health . Attending medical or allied health appointments are not possible for some sufferers.They are not able to use Public transport,drive and often have no one to take them.They are sometimes unable to sit in a car,waiting room or through an appointment.Without financial aid they are often not able to pay for medical care ,specialists or even transport. The nature of the report itself highlights the incapacitation of some sufferers who are unable to read and/or respond,even briefly.
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 challenges facing clinicians are documented.However whilst there is a definite need for clarity on diagnosis and management,clinicians also need to be made aware of misinformation as well as their own prejudices.Any health professional who no longer believes in me/cfs,or its physical basis,should be obliged to tell the patient and refer to a colleague who does. The report is not strong enough on the biomedical basis of the disease..Unless this is made clear to clinicians misdiagnosis as a psychological illness and resulting inappropriate recommendations will continue. Clinicians need education in changing prevailing attitudes to excercise Clinicians obviously like biomarkers .However many/most diseases are diagnosed on the basis of symptoms and signs. certainly in the early stages of gaining knowledge There are enough known symptoms and signs of me/cfs to make a diagnosis,Education of Clinicians is essential.
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 call for Targeted Call For Research is important.More emphasis needs to be put on the need for biomedical research .Any other research, e.g on psychological difficutlies would need to focus on the impact of the disease and the needs of sufferers rather than on a cause It is important that . the evidence that some patients (many) are harmed by GET/CBT is made available immediately to clinicians and removed from RACGP recommednations. PHARMACEUTICAL COMPANIES ARE REQUIRED TO REPORT POSSIBLE SIDE EFFECTS OF DRUGS,CLINICIANS ARE REQUIRED TO TAKE PATIENTS REPORTS OF SIDE EFFECTS OF MEDICATION . SERIOUSLY.THE SAME SHOULD APPLY TO GET/CBT. IN THE CASE OF PATIENTS SUFFERING FROM ME/CFS .Clinicans also need to be made aware of the difference between CBT as a valid form of psychological help in coping with any illness including me/cfs and using it to challenge the idea that the sufferer has a physical illness. Whilst there is no cure/effective treatment for the disease as a whole,there are some treatments that help some patients manage symptoms.This requires time and patients on the part of clinicians.adequate remuneration is necessary as well as education of medical specialists.
Comments: How could the recommendations be improved?: 
The comment that the dominant treatment plan is psychosocial needs more clear clarification.It needs to be made clear that there is no evidence for the hypothesis that me/cfs is a psychosocial disease.The fact that what little funding there has been for me/cfs has gone to psychosocial research and the lack of biomedical research has perpetuated that hypothesis,
Comments: How could the recommendations be improved?: 
1 A clear message that biomedical research needs to be funded and that funding needs to be made available to encourage researchers into a field where until now it would be difficult to compete for grants or envisage a career path. Universities and research organisations need to be helped/encouraged to encourage their researchers,students to enter an exploratory field and not go for"safe'research options.

Page reviewed: 23 September, 2019