We have developed an organisational position statement on Graded Exercise Therapy. You may download a complete copy here.
• recognises the compelling scientific evidence that ME/CFS is a serious, complex, acquired, multi-system disease.
• supports best practice in diagnosis and treatment of the condition.
• acknowledges that the understanding of the condition is evolving and is subject to re-definition of not only the illness, but also the way it is diagnosed and treated, as more scientific evidence comes to light.
• is concerned about the serious underfunding of biomedical research, treatment and support for people with ME/CFS.
• agrees that post-exertional malaise (PEM), which is the exacerbation of the severity of symptoms following physical or mental exertion, is a hallmark of the condition. This symptom is an obstacle to increased activity in people with ME/CFS.
People with ME/CFS
• is committed to patient-centred care and will seek to ensure program development has consumer and carer input.
• sees effective self-management, such as pacing, as an important aspect of treatment.
• acknowledges that the condition can cause significant social, emotional and financial stress due to its severity, unpredictable nature and stigma.
• acknowledges the grief, loss and trauma that may occur as a result of living with the illness.
Diagnosis and Research
• supports the use of the International Consensus Criteria (ICC) or Canadian Consensus Criteria (CCC) guidelines for diagnosis and for defining research cohorts.
• looks forward to a time when there is a diagnostic test that will clarify the boundaries of the disease and supports increased authoritative biomedical research with clearly defined patient cohorts.
• will advocate for – and where practicable will support – research into the causes, diagnosis and efficacious treatment of ME/CFS based on a biomedical model of the illness.
• believes funded research should have clearly defined cohorts based on ICC or CCC.
• will not support research that is built on the view that the illness is primarily due to deconditioning or that it is psychological in origin.
Treatment and support
• is deeply concerned that there is currently no medical infrastructure to support people with the illness, and will continue to advocate for better care, medical education, support and resources.
• is concerned about the challenges and barriers faced by patients with ME/CFS and their carers in receiving government pensions and allowances such as the Disability Support Pension, National Disability Insurance Scheme and Carer’s Allowance; in particular where there is denial of benefits based on lack of recognition or misconceptions of the illness.
• acknowledges the widespread controversy around GET and CBT as stand-alone treatment options amongst the medical and patient communities worldwide. Emerge Australia acknowledges that a small subset of the patient group has shown improvement following a GET approach. However, as a distinctly larger proportion of the patient group has reported a worsening of symptoms and health following this treatment, Emerge Australia warns of the potential for harm when GET is prescribed in a way that does not consider the nuances of PEM and the individual patient’s health status and illness severity.
• endorses a precautionary approach to all activity and exercise, including any GET, which minimises the risk of PEM and symptom worsening. Emerge Australia notes that from the experience of patients, pacing is the most efficacious management approach available, at this point in time. Pacing involves taking daily activities: mental/cognitive and/or physical, and dividing them into manageable portions and undertaking only those that fit within the energy available for that day. By avoiding going into energy deficit, the aim is for the individual to stabilise their health over time, and to gain a sense of control over their illness and life.
• is aware that CBT is commonly used as a supportive therapy to help people with chronic illnesses to cope with, and adjust to, their illness. When used in this way, CBT does not promise a cure for the underlying condition. Emerge Australia supports this adjunctive approach to CBT. Emerge Australia does not support the use of CBT to challenge patients’ supposed “false beliefs” as a means of encouraging them to be more active than is safe.
• remains hopeful that efficient and nuanced treatment approaches will be found following increased understanding of the biomedical model, and is monitoring the research space to this end.