Lack of research and funding for myalgic encephalomyelitis/chronic fatigue syndrome

Media Release: 16 March 2022

One of Australia’s leading medical specialists on complex and chronic disorders today warned the lack of research and treatment information for the medical profession on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can lead to inappropriate diagnosis and treatment of patients.

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 to develop an effective treatment and care for an increasing number of Australians suffering the debilitating disease. 

“Australia has dropped the ball on myalgic encephalomyelitis/chronic fatigue syndrome research and funding which dramatically impacts 250,000 patients across the country. 

“There is an urgent need to fund more research and awareness to prevent the spread of myalgic encephalomyelitis/chronic fatigue syndrome.”   

Dr Schloeffel said for most people, ME/CFS is a lifelong condition, full recovery (a return to pre-illness functioning) is rare and estimated at less than 10%, with women accounting for 75% of all cases of ME/CFS.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and disabling disease that affects many parts of the body, including the brain and muscles, digestive, immune, and cardiac systems. ME is classified as a neurological disorder by the World Health Organization.”

Dr Schloeffel said the lack of information for GPs, including any recognised cure or treatment, can lead to patients suffering a lifetime of disability and distress which impacts their quality of life and can leave them bedridden, and dependent on carers.

“One of the major problems for both doctors and patients is arranging appointments to obtain relevant information on a patient’s condition on which to base a diagnosis and recommend appropriate treatment.” 

Dr Schloeffel said the many symptoms of ME/CFS can make communicating difficult. Some people who live with ME/CFS report that at times they struggle to recall information, lose their train of thought easily and find comprehending and processing new information difficult. 

“This is why it is extremely important to prepare to see a doctor, so they have a full picture of the patient’s condition, given the complexity of the illness and the need for accuracy is vital. We recommend patients with ME/CFS should work with a family member or friend to prepare an information summary for accuracy,” Dr Schloeffel said.

Visit Emerge Australia’s resources on ‘Management’ of ME/CFS for more information

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