ADVOCACY

ME is a disease that places a significant burden on up to 250,000 Australians and their families. There is currently no treatment or cure. The lack of meaningful biomedical research funding for ME, means patients and their families will wait longer for diagnostic tools, treatment and a cure.

While waiting for a cure, often the situation for people, especially those with severe ME is dire. People with ME are struggling to get appropriate primary health care to manage their symptoms and have problems accessing support to do things most people take for granted. Alongside meaningful biomedical research funding, creating Australian clinical guidelines for ME is key for people to receive appropriate primary care and to access services.

ME Australia is working alongside other organisations and individuals, to bring forward change to improve the lives of these often neglected Australians and their families. Contact us if you would like to work with us to achieve change.

Resources

Primer for ME for health practitioners Download

ME Australia fact sheet

Draft letter to parliamentarians

Response to NHMRC draft advisory report Download

Expectations for new clinical guidelines Download

Funding for biomedical research

Australians scientists are doing world leading research and they are poised to expand their biomedical research to improve diagnosis and, over time, treatment. We are seeking a $15 million commitment from Government to bring forward this promising science.This funding will help transform the diagnosis, management and treatment of ME.
An investment of $15 million in biomedical research will see rapid progress with:

The development of a new diagnostic protocol for ME combining data from clinical examination, urine and blood pathology, and cell culture.
Understanding the molecular pathophysiology of ME and thus potentially reveal treatment options.
Validating previous discoveries through the study of much larger cohorts.
Mechanistic molecular studies to understand cause-effect relationships in the disease.
The discovery and development of new treatments, based on understanding the disease mechanisms.

Investing in this research sends a powerful message to patients and their families that they matter, the Government is looking to help and it would provide them with hope.

Primary Care

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.

NDIS

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.

ADVOCACY

ADVOCACY

Resources

Funding for biomedical research

Primary Care

NDIS

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