Backing belief with better support for people with chronic fatigue

Department of Health

The Australian Government has heard the calls for better support for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), long COVID and related conditions, with funding to develop new Australian clinical guidelines.

The Government will provide $1.1 million to the National Health and Medical Research Council (NHMRC) to develop the guidelines in consultation with patient groups, health professionals, and medical scientists.

Consultations will include engagement with Emerge Australia, ME/CFS Australia, the Royal Australian College of Physicians and the Royal Australian College of General Practitioners, among others.

ME/CFS is a neurological condition affecting up to 250,000 people in Australia.

Symptoms can be debilitating and include sleep issues, pain, problems with memory, sensitivity to light, touch and sound, problems with standing and balance, and body temperature and weight.

A central feature of ME/CFS is post-exertional malaise (PEM), which means that symptoms can get worse after physical or mental activity for some people. Adults and children can also experience recurrent and persistent flu-like symptoms.

The new guidelines will determine diagnostic criteria to help doctors and their patients with better treatments, coping strategies, and options for care.

In addition to ME/CFS, the guidelines will make reference to other post-infection onset conditions with similar or aligned symptoms, like post-acute sequelae of COVID-19, also known as long COVID, postural orthostatic tachycardia syndrome (POTS) and fibromyalgia.

Quotes attributable to Minister Butler:

“I’d like to thank people with ME/CFS for their ceaseless campaign to be heard and believed in the face of, frankly, years of doubt and disregard.

“ME/CFS does not discriminate. It affects people of all ages, ethnicities, and socioeconomic backgrounds.

“The development of new Australian clinical guidelines will provide GPs and their patients with better diagnosis, treatment and care.

“The NHMRC will lead the development of these guidelines, in consultation with and for the benefit of the more than 250,000 people who suffer daily, often silently, with ME/CFS and related conditions.”

Quotes attributable to Emerge Australia CEO, Anne Wilson:

“The Albanese Labor Government is the first Australian Government in over 20 years to fund development of clinical guidelines for people with ME/CFS.

“This is a landmark and monumental announcement by Health Minister Mark Butler.

“It will be a game changer for Australia’s 250,000 people with ME/CFS. They have been seen, heard and not left behind.”

Quotes attributable to ME/CFS Australia Spokesperson, Penelope McMillan:

“We welcome this exciting announcement. Thank you to Minister Butler and his department for their commitment to this much-needed development in the care of people with ME/CFS, long COVID, and related conditions.

“We look forward to working alongside other groups representing patients and our colleagues from the health professional groups and experts in the evaluation of scientific evidence.

“This will change lives for patients and those who care for them.”

/Media Release. View in full here.