Australian leaders call for PEM recognition in ME/CFS care

By AI, Created 9:48 AM UTC, May 20, 2026, /AGP/ – More than 20 Australian clinicians, researchers and community leaders have issued a communique urging faster recognition of post-exertional malaise in ME/CFS and long COVID. The statement, released by Emerge Australia during ME/CFS Awareness Week, calls on health systems, employers and policymakers to adopt PEM-aware care and reduce avoidable harm.

Why it matters: - Post-exertional malaise, or PEM, can trigger major symptom worsening after physical, cognitive, emotional or orthostatic activity. - Missing PEM can lead to advice that makes ME/CFS and long COVID patients worse, including avoidable harm from inappropriate exercise guidance. - Emerge Australia says the issue affects care, education, workplace responses and policy across Australia.

What happened: - More than 20 doctors, researchers and community leaders signed a formal communique during ME/CFS Awareness Week, May 11-17. - Emerge Australia released the statement in Melbourne on May 5, 2026. - The communique says: “Fatigue is not the same as post-exertional malaise (PEM).” - Signatories include Emeritus Professor Paul Fisher, Emeritus Professor Lawrence Cram AM, Professor David Putrino, Dr Bernard Shiu, Adjunct Professor Sophie Scott OAM and Tracey Spicer AM.

The details: - PEM is described as a clinically significant worsening of symptoms that can cause symptom exacerbation, functional decline and lasting health deterioration. - The communique urges healthcare providers, educators, employers and policymakers to adopt PEM-aware approaches to care. - Emerge Australia says an estimated 250,000 Australians live with ME/CFS. - Up to 1 million Australians may be affected by ME/CFS, long COVID and related post-infectious conditions. - The annual economic cost of ME/CFS alone is estimated at $10 billion to $18 billion. - Seventy-five percent of ME/CFS patients are women. - A quarter of patients are housebound or bedbound. - The average time to diagnosis is nearly four years. - Anne Wilson, CEO of Emerge Australia, said patients risk getting profoundly worse when told to exercise through symptoms. - Wilson said the path forward is validation, proper diagnosis and properly designed care. - Professor David Putrino said objective testing for these conditions has been suboptimal to date. - Putrino said better biomarkers could speed therapeutic development. - ME/CFS Awareness Week includes a daily podcast series with seven guests sharing personal and professional experiences with PEM. - The week also includes the Excellence in ME/CFS Journalism Awards and an online symposium on World ME/CFS Day, May 12. - Podcast guests include a retired physiotherapist with four decades of clinical experience, a 16-year-old patient advocate, two registered nurses with ME/CFS expertise and a social worker with 25 years of lived experience. - Emerge Australia says the week is meant to reach patients, clinicians, employers and policymakers with the message that PEM is real and not the same as fatigue.

Between the lines: - The communique is also a policy push, not just a clinical statement. - Emerge Australia is using Awareness Week to build momentum for broader recognition of PEM as a standard part of ME/CFS and long COVID care. - The focus on biomarkers and registry-backed research signals a push toward more objective diagnosis and treatment development. - The emphasis on women, housebound patients and long diagnosis times points to a chronic care gap with social and economic consequences.

What’s next: - Emerge Australia says the communique launches year one of a three-year program to make PEM recognition standard clinical practice across Australia. - The organisation is calling on the government to fund GP education on PEM. - Emerge Australia also wants investment in specialist ME/CFS and long COVID clinics. - The group is seeking expanded support for the AusME Registry and Biobank, which is currently backing 25 research projects. - Emerge Australia wants equitable patient access to effective medications. - The full communique and signatory list are available in Emerge Australia’s announcement.