When Chloe’s ME/CFS worsened, she felt utterly alone. But one call from our Telehealth Nurse Service opened a world of support. Donate to Emerge Australia by 30 June 2022, so no ME/CFS patient faces this disease on their own

Telehealth is a lifeline for ME/CFS patients – but too many are missing out

What if you needed urgent support, only to realise it’s more than a month away? This is the grim reality for up to 250,000 people living with ME/CFS in Australia, as demand for our Telehealth Nurse Service hits breaking point.

Since our service launched in 2019, Emerge Australia’s registered nurses have helped over 900 people with ME/CFS manage their disease. Through thousands of calls, they’ve linked patients to expert health advice and high-quality support. But demand for the service keeps growing.

Over the past three years, the number of ME/CFS patients supported by our telehealth nurses each year has nearly doubled. Yet, despite our nurses’ dedication, patient enquiries aren’t slowing down.

Our Telehealth Nurse Service is the only one of its kind in Australia. It’s a lifeline for people living with ME/CFS. Without it, patients like Chloe have nowhere else to turn – which is why she’s shared her story

‘I struggled to admit I was unwell’: Chloe’s ME/CFS relapse

Chloe had been living with ME/CFS for 16 years before connecting with our Telehealth Nurse Service. But one day, her health worsened. Her already debilitating ME/CFS symptoms – like exertional intolerance, widespread pain and trouble concentrating – became even more severe.

Chloe couldn’t leave the house. At times, she couldn’t get out of bed. Unable to explain what was happening to those around her, she began to feel isolated and stricken with self-doubt.

“When my relapse happened, I felt very alone. I was living in a world that didn’t understand my illness. I minimised my suffering, and many of my daily experiences, due to other people’s opinions. I struggled to admit I was unwell.”

For people with ME/CFS, a sudden exacerbation can be overwhelming. Will you help patients like Chloe receive the telehealth support they desperately need?

‘I felt I’d struck gold!’: finding the Telehealth Nurse Service

At Emerge Australia, so many of the ME/CFS patients we meet are like Chloe.More than 70% have been managing their symptoms on their own, without support, and over 80% have ceased or significantly reduced paid work after illness onset. 

But when patients like Chloe find our Telehealth Nurse Service, the effect is life-changing.

Chloe still remembers her first telehealth call, and the gratitude she felt for her nurse’s caring manner and deep knowledge of ME/CFS. Looking back, she feels she’d ‘struck gold’.

I found the nurse very informative. She shared lived experience wisdom, tips, information and ideas, and reiterated the importance of pacing and understanding post-exertional malaise. I also really appreciated her gentleness and compassion. She listened actively, which provided respite from the daily overwhelm of living with symptoms and stigma.

As the call continued, Chloe’s nurse helped her acknowledge and accept the extent of her suffering. For the first time in years, Chloe felt understood.

Knowing I was supported helped me feel like I wasn’t navigating the illness on my own. I felt validated, truly validated, for the first time in a long while.

Patients like Chloe shouldn’t have to navigate this illness alone. By giving today, you’ll make sure every ME/CFS patient receives professional advice and validation from acaring telehealth nurse.

‘Putting my ME/CFS needs at the centre’: Chloe’s life now

A year after her telehealth consultation, Chloes wellbeing has improved. She’s prioritisingher ME/CFS needs and living in line with her available energy.

Through the Telehealth Nurse Service, I’ve been able to give myself permission to do what helps me. I’ve stopped trying to 'keep up' with the world around me and have put my ME/CFS needs at the centre instead.

Each day, she’s feeling more confident. With a toolkit of strategies at the ready, she’s having better interactions with her healthcare team and her family, too.

I’m able to communicate and advocate for myself more directly. At home, I’ve streamlined our calendars. I share information about my energy levels (like my ‘body battery’) with my family. And I’m able to make adjustments, like putting a daybed in the lounge room, so I can be with my family more comfortably.

She says acknowledging the significance of ME/CFS in her life, with the support of a committed nurse, has had huge benefits.

Even though I’m still in relapse and my symptoms haven’t changed, my quality of life has improved, and the grief and distress has lessened significantly. I’m more aware and honest with myself about my capacity, which has reduced a lot of stress.”

Chloe’s story shows the enormous difference a single telehealth session can make for a patient managing ME/CFS. But across Australia, countless others are still waiting for their turn.

Your generous gift will help more patients like Chloe access our Telehealth Nurse Service, right when they need it. Because when a health relapse happens, there’s no time to wait.