The new Australian ME/CFS Research Collaboration is expected to officially open early in 2021 and will play a vital role in the global search to determine the cause of ME/CFS, find a cure, treat symptoms better and define a biomarker for speedy, accurate diagnosis.

“ME/CFS is a highly disabling condition that affects an estimated 250,000 Australians, about 1% of the population,” Emerge Australia CEO Dr Heidi Nicholl explained.

It’s a complex, multisymptomatic, life-altering condition which can cause headaches, joint pain, cognitive impairment, profound fatigue and post-exertional malaise. Around 25% of people with ME/CFS are so unwell they are bedbound or housebound.

“The cause is unknown, there is no known cure, and there are no effective treatments. There is only pacing – managing energy levels – and stepwise management of symptoms which may have limited success.”

Announced in October 2020, the new research collaboration will be directed by Dr Chris Armstrong, best known for his research using metabolomics to observe biochemical alterations in ME/CFS patients.

Dr Armstrong said the collaboration would develop a research approach that focuses on the individual patient and the biology that underlies their disease by analysing 100 ME/CFS patients over three years, monitoring their health data via wearables and sampling and analysing their blood and urine.

The outcome of the research will be a condensed, personalised analysis that can then be applied to treatment trials, enabling tracking of the development of ME/CFS prior to diagnosis, stratification of the ME/CFS patient population, and a better understanding of the underlying biology of the disease processes of the condition.

The longitudinal study approach is the cornerstone of personalised medicine, Dr Armstrong said.

“By looking at the biological differences in an individual at mild and severe moments of their disease we can start to piece together what may be causing their illness and, at the very least, work out what improves or exacerbates their symptoms,” he said.

The Melbourne ME/CFS Research Collaboration was founded by Emerge Australia in partnership with Open Medicine Foundation (OMF) and is the fifth international research centre in the OMF network, placing Australia in the largest, concerted worldwide non-profit effort to diagnose, treat and find a cure for ME/CFS.

It is supported through the new fundraising campaign Help Cure ME, which allows people with ME/CFS and the wider community to donate directly to high quality biomedical research into ME/CFS here in Australia.

Two-time MotoGP World Champion and motorcycle racing legend Casey Stoner has joined the Emerge Australia team as our first Ambassador to help raise funds for the collaboration's initial three-year program and to raise awareness about the reality of life with the condition.

Casey revealed publicly that he was suffering from ME/CFS last December and featured on Channel Nine’s Today Show on 21 October, speaking candidly about the massive impact ME/CFS has had on his life, his new partnership with Emerge Australia, and his support for the new Melbourne ME/CFS Research Collaboration.

“I’m proud to assist in raising awareness and funding to support people like myself suffering from ME/CFS," he said. "I need other people to know that they're not the only ones going through it.

"For us to have a collaboration in Australia for ME/CFS where world-class research is being conducted is huge news, it’s very encouraging for the whole ME/CFS community. We need more information, we need more doctors with knowledge so we don’t have to wait months and years for a diagnosis, we need specialists. We all want to find a better diagnosis, treatment regime and eventually, a cure.
“Funding for this additional research work is vital. I’m proud to join with Emerge Australia in calling for people to give generously to the Help Cure ME campaign.”

Click here for more information, and click the button below to donate to Help Cure ME:

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