No-one should fight to have their disease believed. ME/CFS patients like Ben* are dismissed by unaware doctors each day. Donate to Emerge Australia by December 24th 2021, so every ME/CFS patient can get the help they deserve. 

With Christmas fast approaching we urge you to give the gift of GP education and change a patient’s life. Not only for those currently affected, but also for the new group of people joining ME/CFS patients at a worrying rate: those with Long COVID.  

Worrying increase in ME/CFS patients due to Long COVID

Researchers have now established clear links between ME/CFS and Long COVID. Six months after contracting coronavirus, patients worldwide are reporting symptoms with striking similarities to ME/CFS – fatigue, post-exertional malaise and cognitive dysfunction. In one study, 90 per cent of people were still recovering from COVID-19 after more than eight months.  

With COVID-19 cases on the rise in Australia, accurate and timely diagnosis of ME/CFS has never been more vital. Our GPs and health professionals urgently need the knowledge to identify and manage ME/CFS, before patients’ symptoms worsen. 

At Emerge Australia, we know first-hand that managing ME/CFS starts with early accurate diagnosis and informed care. That’s why we’re rolling out an updated national, evidence-based GP education program, delivered flexibly online through HealthPathways — the leading GP resource used at the point of care.

Ben’s story: misdiagnosed and turned away

The impact that ME/CFS education can have for patients can't be understated — one family’s story stands out. It’s the story of Lynne and her son Ben*, whose lives were changed when their GP completed ME/CFS training, thanks to the generosity of people like you.  

Ben was a footy player, surfer and builder living in regional SA. He was healthy, active and didn’t smoke or drink, but one day while kickboxing he suffered a kick to the head. This injury would turn his life upside-down.  

“He had a headache and he couldn’t shake it. His GP thought it was a mild concussion, but Ben started really struggling at work. He kept going back to the doctor and being dismissed. Tests were run, including an MRI on his brain, and lots of things were ruled out. Soon, he had to stop work altogether. Looking back, his GP was sympathetic, but not very knowledgeable.”  

For Ben, getting the right diagnosis for ME/CFS was fraught. His GP appointments left him feeling frustrated. Each passing month became a missed chance for him to receive the correct care. 

“With this illness, if you get something wrong, the consequences are huge. It impacts people’s health so much. GPs have to get the diagnosis and treatment correct.”  

Right now, across Australia, patients like Ben are being misdiagnosed and turned away. Will you donate $50 so people with ME/CFS can receive the correct diagnosis they desperately need?  

Many months later, Ben was diagnosed with ME/CFS. But his relief at finally having a name for his disease was short-lived. Accessing medical help was extraordinarily difficult, because his GP lacked treatment expertise.  

“If you were given a cancer diagnosis, you’d be put in touch with services and support straight away. But if you’re given a diagnosis of ME/CFS, you’re sent on your way. You go off and basically become so unwell that you can’t leave your bed. You just drop off the radar. You disappear.”  

By the end of 2019 Ben was bedbound, requiring round-the-clock care from his mum, Lynne. When they made contact with a new GP they felt hopeful. But what could have been a fresh start instead became a disaster.

“The new GP refused to make a home visit; he insisted Ben have a day in hospital so he could run more tests. He had a fixed mindset about what ME/CFS was and how to treat it – and indeed, whether it existed at all.”  

Ben’s GP put him on an out-dated program of graded exercise therapy and was advised to take anti-depressants. 

“They think I’m depressed. They think it’s all in my head. If I’m depressed, it’s because I’m dealing with people who don’t believe me.”  

How could they get his GP to understand?  

How GP education can change a family’s life

It was at this time that Lynne turned to Emerge Australia and our GP Education program. 

“I told him, ‘There’s ME/CFS training you can do, it’s a module of professional learning by Emerge.’ He said, ‘I don't have time for that,’ and I said, ‘Well, you have to! You have to be clued up with this.’”  

When Ben’s GP completed the online training module about ME/CFS, his attitude changed instantly.  

“The next time we met the GP was at Ben's house. He was so much more compassionate and openminded. He was willing to listen, and open to ideas. It validated everything we’d been through.”  

Today, the family are working in partnership with their GP. There’s an open and ongoing dialogue between them. 

“Knowing that our GP ‘gets it’ is invaluable. Please donate, because this illness can strike anybody at any time. And it doesn't matter how much money you've got if someone you love isn’t well.”  

Now, more than ever, people with ME/CFS need expert support from knowledgeable GPs. By giving just $100 today, you can help transform an ME/CFS patient’s life through early diagnosis and correct care. 

Together, we can build a brighter future for Australians living with ME/CFS. 

Your generous gift today will help deliver critical education to every doctor in Australia, so no patient’s health is put at risk.  You will receive a tax deduction for all donations over $2. 

*Ben’s name has been changed to protect his privacy.