A team of top scientists and clinicians from Griffith University is heading to Canberra today to support calls for new national clinical guidelines to improve the care of hundreds of thousands of Australians with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and potentially thousands more with Long Covid.
The team is led by the Director of the National Centre for Neuroimmunology and Emerging Diseases (NCNED) at Queensland's Griffith University, Dr Sonya Marshall-Gradisnik, a world expert in ME/CFS.
"While nations around the world are looking to Australian research as leaders on ME/CFS and Long COVID, our own clinical guidelines for treating patients are more than 20 years out of date," Professor Marshall-Gradisnik said.
"The existing guidelines do not reflect the great advances we have made in the past decade to understand the pathology, diagnosis, and treatment of ME/CFS, and the advice they offer doctors is out of step with current science."
The Griffith University team was the first in the world to prove the pathological link between ME/CFS and Long Covid and the first to report on the potential benefit of repurposing drugs, with known safety data, to fast-track new treatment options for ME/CFS patients.
Earlier this year, they used magnetic resonance imaging (MRI) to show ME/CFS and COVID-19 have the same effects on brain structure.
More than 40 parliamentarians, researchers and patient representatives around the country will attend the Parliamentary Friends of ME/CFS meeting at Parliament House on Tuesday, calling on the Federal Government to establish and fund a working group to prepare new clinical guidelines so doctors around the nation have accurate and up-to-date advice.
"The current clinical guidelines still recommend graded exercise therapy," said ME/CFS Australia President Sarah FitzGerald.
"This treatment has been discredited because it is known to make patients worse."
Despite being a champion horse-rider and tennis player in her youth, Ms FitzGerald has suffered from ME/CFS all her life.
Now her daughter, a 28-year-old paramedic, is also experiencing symptoms.
This is the first time the Parliamentary Friends of ME/CFS has met since the forum was established in 2019.
Since then, multiple reviews have recognised the prevalence and need to support ME/CFS, including a recommendation for funding handed down by the Parliamentary Inquiry into Long Covid in April 2023.
That recommendation was not picked up in the recent Federal Health budget.
Some advocates will be presenting to the group from their beds as they are too ill to travel to Canberra.
After decades of controversy, ME/CFS is recognised as one of a suite of post-infectious diseases that often follow a viral illness.
Symptoms can be wide-ranging, depending on which cells in the body are affected, and patients are often left severely disabled, unable to work, and even bedridden for years.
One of the distinguishing signs is post-exertional malaise, where even minor physical or mental activity makes symptoms worse, and resting doesn't help.
Peak body ME/CFS Australia, which represents a network of patient-led, volunteer-run charities around the country, said the cost to individuals was incalculable but the cost to Australia, in lost productivity and healthcare, was estimated at an astounding $14 billion a year.
The organisation said ME/CFS is growing as a national public health emergency with an estimated 240,000 Australians suffering from the disease including many whose ME/CFS was triggered by COVID-19.
Around 25 per cent of people with ME/CFS are housebound or bedbound, often for years, and fewer than 15 per cent of patients are able to work.
Annual research funding for ME/CFS in Australia is currently $6 per person for the 240,000 ME/CFS patients in Australia.
This pales in comparison with $4,338 per person for an estimated 2,272 patients with Motor Neurone Disease (MND), or $151 for an estimated 33,300 people with Multiple Sclerosis.
