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New Australian Clinical Guidelines for ME/CFS urgently needed

Media Release 

Existing, 20-year-old Clinical Guides Need Review

Read the report – State of the Nation: Because people with ME/CFS matter

Emerge Australia has called for an urgent, major overhaul of the current, 20 year old clinical guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to provide the medical profession, especially general practitioners, with the most update information to assist the 250,000 Australians living with the disease.

Australia’s current clinical guidelines are out of step with best practice clinical guidelines overseas and even include treatments known to harm patients. 

Australia last updated its clinical guidelines for ME/CFS 20 years ago in 2002, and in its 2019 report, the National Health and Medical Research Council’s (NHMRC) ME/CFS Advisory Committee recommended updating the clinical guidelines.

Anne Wilson, CEO of Emerge Australia said the lack of biomedical research into ME/CFS, its known causes and proven treatment options has significant implications for current clinical guidelines which need to be upgraded urgently.

Ms Wilson said, of the 250,000 Australians who live with ME/CFS, 25 per cent, (60,000+ people), have symptoms so severe they are housebound or bedbound and dependent on carers.

More than two-thirds of ME/CFS patients are living below the poverty line.  

Dr Richard Schloeffel OAM, the Medical Director of Emerge Australia, who for 24 years has focused his practice and research on the understanding and management of Complex and Chronic Disorders, said funding for research into ME/CFS is urgently needed so patients are managed safely.

Dr Schloeffel explained that in the past, graded exercise therapy (GET) and cognitive behaviour therapy (CBT) have been commonly recommended treatments for ME/CFS. GET assumes the symptoms of ME/CFS are largely the result of physical deconditioning, due to lack of activity, a theory that has not only been disproven but GET has been shown to cause harm to people with ME/CFS.  

“Currently, there is no known cure for ME/CFS. So, there is a vital need for information about how to accurately diagnose and manage patients to prevent the illness getting worse. This information needs to be made available to all GPs, the medical profession and patients in the form of properly researched and reviewed Australian clinical guidelines,” Dr Schloeffel said.

As ME/CFS research continues to evolve, clinical guidelines quickly become outdated. Emerge Australia believes that new ME/CFS guidelines should be living documents which are regularly updated by a standing committee of clinicians, researchers, patients and carers, as new evidence becomes known.

In a recent report, State of the Nation: Because people with ME/CFS matter, Emerge Australia further details the urgency for Australia to update its clinical guidelines for ME/CFS.

Patient Stories 

Hear from real people living with the impacts of life with ME/CFS

Jennifer shares the impact of ME/CFS on her life and family.

Jop shares his story of life with ME/CFS.

Media Enquiries:

Ron Smith OAM, Media Communications, Emerge Australia – Mobile: 0417 329 201 to arrange an interview with Anne Wilson or Dr Richard Schloeffel OAM.

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