Evidence shows patients with Myalgic Encephalomyelitis (ME) have a better quality of life when GPs help them to manage symptoms. While GPs can get guidance from the International Primer and the CDC, there is currently no Australian ME guidelines available to help them.
Over the next year the National Health and Medical Research Council are expected to consider whether they will establish guidelines for ME and for CFS, or if they should rely on the Australian CFS Guidelines. As people with ME have muscular, neurological and autonomic symptoms, it is important to differentiate between this disease and people with fatigue centred diagnoses.
To improve primary care for the up to 250,000 Australians with ME, we will continue to advocate for ME guidelines, based on current science.
Around a quarter of people with ME are house bound or bed bound and need additional support to do things most people take for granted. Many people with ME have difficulties accessing National Disability Insurance Scheme (NDIS) to gain the support they need to do daily activities (e.g. shower).
In our discussions with the National Disability Insurance Agency (NDIA), they have advised access to the NDIS is based on a person’s functional impairment, not on their condition or diagnosis. However, the NDIA is concerned that people with ME or CFS may be expected to recover, as people with conditions that are not permanently disabling cannot receive NDIS support or services. The NDIA’s concerns seem to have been informed by people supportive of the current 2002 Australian CFS Guidelines and people who do not distinguish between ME and CFS.
To improve people with ME access to the NDIS, we will continue to work with the NDIA. We are encouraging them to run broader consultations on this issue. We will also continue to advocate for Australian ME clinical guidelines to remove confusion for the NDIA on the nature of this disease.