250,000+ Australians live with ME. 1 in 5 have Long COVID. WA offers no public treatment, no clinics, and no hope. That must change.

My name is Lauren May, and I live in Western Australia.

I became ill in 2019 after a virus triggered Crohn’s disease and a cascade of immune dysfunction. I wasn’t taken seriously by doctors early on, and the delay in treatment caused me to develop ME/CFS, Also known as Myalgic Encephalomyelitis (ME). I haven’t been able to return to work since. Then in 2022, I caught COVID at a local community event that had no safety measures. My condition worsened. I’m now housebound, sometimes bedbound. I can’t drive, can’t live independently, and rely on care workers just to survive.

I live with the complex, disabling effects of severe ME, Long COVID, POTS, MCAS, and more—and there is nothing in the WA health system for someone like me. No specialist clinics. No treatment options. No pathway for care. The financial burden has been immense.

Despite a federal inquiry into Long COVID back in 2023, and the urgent need to reform treatment pathways for ME, the Australian government has failed to implement any meaningful solutions. Meanwhile, WA Health continues to neglect this community entirely. Enough is enough.

On ME/CFS Awareness Day (May 12), we are calling on the WA Government and the Federal Government to urgently implement accessible, evidence-informed, and patient-led treatment options for people living with Myalgic Encephalomyelitis and Long COVID.

Over 250,000 Australians are estimated to live with ME, many of them undiagnosed due to lack of clinician training. One in five people now experience symptoms of Long COVID—many chronically. Yet there are no public multidisciplinary clinics, no funded treatment pathways, and no dedicated services for the majority of people navigating these disabling conditions.

In WA, the situation is even more dire:

 • No ME or Long COVID specialist clinics exist

 • No hospital-based care pathways

 • No options for people who are homebound or severely disabled

 • No public access to treatments like autonomic rehabilitation, antiviral therapy, MCAS stabilisation, or hyperbaric oxygen therapy—even for those who’ve shown benefit

This is a failure of the healthcare system to care for some of its most vulnerable.

We are asking for:

 1. A publicly funded, multidisciplinary treatment clinic for ME and Long COVID in WA—with home-visit capacity for those who are severely ill

 2. A national plan for ME and Long COVID, developed with the guidance of patients, carers, and research-informed organisations like Emerge Australia

 3. Training for all GPs and medical staff in the diagnosis and management of ME, Long COVID, POTS and related conditions, through pathways by Emergency Australia or Open Medicine Foundation

 4. Equitable access to emerging and evidence-informed treatments—not just vague pacing advice or online handouts

 5. Recognition that this is a disability issue, and a commitment to fund long-term care and income support for those who can no longer work

People are losing their lives to this—sometimes through death, but more often through disappearance. Not all suffering ends in a funeral.

For many of us, it’s a quiet vanishing: from workplaces, from dinner tables, from friendships and families, from the small rituals of daily life that make us feel human.

We are disappearing behind closed doors, into darkened rooms, into beds that become our prison. We are shut away from the people we love and the world outside—not because we want to be, but because the system has allowed us too.

For those with severe ME or Long COVID, there is nothing but the slow erosion of independence. We can no longer drive, work, cook, bathe ourselves, or afford the escalating costs of survival. 

It is unacceptable that in 2025, Australians are still being told to “just pace better” while their bodies collapse under the weight of chronic illness. It is unacceptable that families are going bankrupt trying to keep loved ones alive. And it is unacceptable that our governments continue to ignore a public health crisis affecting hundreds of thousands.

If you believe in dignity, access, and justice in healthcare—please sign and share.

We cannot wait any longer.