Every tissue and organ in the body is impacted by this illness
For decades, myalgic encephalomyelitis/chronic fatigue syndrome has occupied an uneasy space in medicine — real in its devastation, yet dismissed as psychological for want of measurable proof. A new Australian study, drawing on the blood of sixty-one patients who endured years of diagnostic wandering, has found distinct biological signatures in immune cell function and energy production that suggest the condition is written in the body's own language. The research, published in Cell Reports Medicine, does not yet offer a clinical test, but it moves the conversation from speculation to cellular evidence — a shift that carries profound consequences for the hundreds of thousands of Australians living in diagnostic limbo.
- People with ME/CFS wait an average of six years for diagnosis, cycling through specialists in a system designed to rule out everything else rather than identify what is actually wrong.
- One patient spent eight years confined to a single bedroom, unable to tolerate sound or visitors, while seeing nearly forty doctors who could offer no answers — a human cost that gives the science its urgency.
- Researchers at the University of Sydney found that immune cells in ME/CFS patients produce significantly less energy and show no orientation toward fighting pathogens, directly challenging the assumption that the condition is psychological.
- Elevated plasma proteins linked to circulation problems were also detected, suggesting a systemic disruption that could explain why patients report hundreds of different symptoms across nearly every tissue and organ.
- Using machine learning, the team is now developing laboratory tests that could identify ME/CFS through direct biological markers rather than exclusion — potentially compressing years of diagnostic delay into a single blood draw.
- The study's sample size of 61 patients is considered substantial for this type of complex in vitro research, and independent reviewers find it methodologically sound despite acknowledged limitations in gender balance and disease-stage variation.
Ella Engel spent eight years in a single bedroom — fainting when she stood, unable to bear sound, separated from her brother in the next room for four of those years. Before the isolation took hold, she had seen nearly forty doctors. None had answers. ME/CFS has no single diagnostic test, and the system built around it works by elimination: ruling out everything else until the condition is what remains. In Australia, between 250,000 and 500,000 people live with it, yet finding a knowledgeable clinician can feel like accident rather than design.
Engel eventually found Richard Schloeffel, a general practitioner and researcher who recognised what she had. After eight years, she finally had a name — severe ME/CFS — and a doctor who understood it. Years later, her blood became part of something larger. She and sixty other patients donated samples for a study published in Cell Reports Medicine, led by Benjamin Heng at the University of Sydney, comparing their cellular function to that of healthy volunteers matched by age and sex.
The findings were significant. Immune cells in ME/CFS patients showed markedly lower energy production and were not oriented toward fighting pathogens. Elevated plasma proteins, often linked to circulation problems, were also detected. Schloeffel, a co-author with forty-six years of practice and roughly 6,000 ME/CFS patients treated, framed the implications plainly: if the vascular, immune, and cellular energy systems are all disrupted, every organ suffers. The condition is not psychological. It is biological — visible, now, at the cellular level.
Heng's team used machine learning to develop laboratory tests capable of identifying ME/CFS directly rather than by exclusion. The work ahead is validation. Emma Tippett of the Burnet Institute, who was not involved in the study, noted that 61 patients is actually a substantial sample for this kind of complex, expensive in vitro research, and found the methodology sound despite some limitations in gender balance and variation in disease stage.
Engel has moved from very severe to moderate ME/CFS. She can watch the sunrise, walk along the beach, sit at the dinner table with her parents. Many others never improve. She remains cautious about her own future — but her blood has already travelled further than she has, into laboratories and data, quietly helping to make a long-invisible condition legible to the world.
Ella Engel spent her late teens and early twenties confined to a single bedroom. The fatigue was relentless, the pain constant, and the dizziness came without warning—sometimes she would faint simply by standing. For eight years, no one visited her. For four of those years, she did not see her brother, who lived in the adjacent room, because even the sound of his presence felt unbearable. Before that isolation took hold, she had cycled through nearly forty different doctors and specialists, each appointment a fresh start, each one asking the same questions, offering no answers.
She was not alone in this struggle. Myalgic encephalomyelitis/chronic fatigue syndrome—ME/CFS—has no single diagnostic test. People with the condition wait an average of six years before receiving a diagnosis, often enduring misdiagnoses, unnecessary hospitalizations, and interventions that do more harm than good. In Australia, somewhere between 250,000 and 500,000 people live with ME/CFS, yet the condition remains so poorly understood that finding a knowledgeable clinician feels like accident rather than design. The system relies on exclusion: ruling out everything else until ME/CFS is what remains. As Engel would later observe, a system built on what something is not leaves enormous room for error.
Then she met Richard Schloeffel, a general practitioner and researcher who recognized what she had. After eight years of isolation, Engel finally had a name for her suffering: a severe form of ME/CFS. More importantly, she had a doctor who understood it. Now, years later, her blood is helping to change how the medical world sees the condition. Engel and sixty other people with ME/CFS donated blood samples for a study published in Cell Reports Medicine, led by Benjamin Heng at the University of Sydney. The researchers compared their cellular function to that of healthy volunteers matched by age and sex.
What they found challenged the long-standing dismissal of ME/CFS as psychological. The immune cells of people with ME/CFS showed markedly lower energy production and were not oriented toward fighting pathogens. The researchers also detected elevated plasma proteins, often associated with circulation problems. Schloeffel, a co-author who has treated roughly 6,000 ME/CFS patients over forty-six years of practice, explained the implications: if the vascular system is disrupted, if the immune system is disrupted, if cellular energy production is disrupted, then every tissue and organ in the body suffers. This, he suggested, is why people with ME/CFS report two or three hundred different symptoms. The condition is not in their heads. It is written in their cells.
Using machine learning, Heng's team developed a series of laboratory tests that could, in principle, identify ME/CFS patients directly rather than by elimination. The work now is validation—proving these tests work reliably enough to be used in clinical practice. If successful, the path to diagnosis could shift from years of wandering through specialists to a blood draw and a clear answer.
The study itself is small: 122 people total, with 61 ME/CFS patients. Emma Tippett, a clinical research fellow at the Burnet Institute who was not involved in the work, noted that this sample size is actually substantial for this type of research. In vitro studies—those requiring blood extraction and complex laboratory analysis—typically involve ten to twenty participants. They are expensive and time-consuming. Tippett acknowledged limitations: the gender balance was slightly uneven, and patients were at different stages of disease progression with potentially different triggers. Yet even accounting for these constraints, she found the study sound and valuable, confirming previous findings while advancing understanding of a condition that remains poorly mapped.
Engel considers herself fortunate. With Schloeffel's help managing her symptoms, she has moved from very severe to moderate ME/CFS. She can now watch the sunrise, walk along the beach, shower alone, sit at the dinner table with her parents. Many others with ME/CFS do not recover. Many never improve at all. Yet Engel remains cautious about her own future, aware that she still has distance to travel. Her blood, though, has already traveled further than she has—into laboratories, into data, into the slow work of transforming a condition that has long been invisible into something the body itself can reveal.
Notable Quotes
A system that relies on exclusion rather than identification leaves enormous room for error— Ella Engel
If there's disturbance in the vascular system, disturbance in the immune system, disturbance in the cell energy function, that would explain why people have 200 or 300 symptoms— Dr. Richard Schloeffel
The Hearth Conversation Another angle on the story
Why did it take Ella Engel eight years to get a diagnosis when she was seeing doctors the whole time?
Because there's no test for ME/CFS. Doctors have to rule out everything else first—thyroid problems, depression, anemia, a hundred other things. By the time they've eliminated all the alternatives, years have passed. And many people never get that far. They get stuck in the exclusion process.
So this new study found something biological—something you can actually measure in the blood?
Yes. The immune cells aren't working right. They're not producing enough energy, and they're not geared to fight infections. There are also elevated proteins that suggest circulation problems. It's not one thing. It's multiple systems breaking down at once.
But the study only had 61 people with ME/CFS. Isn't that too small to mean anything?
For this type of research, no. These are expensive, time-consuming blood tests. Sixty-one is actually quite large. The real limitation is that the patients were at different stages of illness, so the picture isn't perfectly clean. But it's clean enough to build on.
What happens next? Do these tests go into hospitals tomorrow?
No. They have to be validated first. The researchers used machine learning to design tests that could theoretically identify ME/CFS. Now they need to prove those tests work reliably in real patients. That takes time. But if it works, diagnosis could shift from years of elimination to a single blood draw.
Ella Engel improved. Does that mean others will too?
She's careful not to claim that. She says many people with ME/CFS don't recover at all. She's grateful for small things—a sunrise, a walk, a meal with her parents—because for years she couldn't have those. Her improvement came with help from a doctor who actually understood the condition. Most people don't have that access.