A breakthrough study that changes the conversation
We’ve all heard someone say, “I’m exhausted, I must have chronic fatigue.” But fatigue is much more than being run down after a big week—it’s a recognised health condition that can change the way you live your life.
Now, the largest study of its kind has confirmed what people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have been saying for decades: this condition is real, and it’s biological.
The DecodeME project, which analysed the DNA of more than 15,500 people with ME/CFS compared with 250,000 controls, found differences in eight regions of the genome. Many of these are connected to the immune system, nervous system, and pain pathways.
In other words, fatigue isn’t just “in someone’s head.” It has measurable biological roots (The Guardian, 2025). This breakthrough is shifting the way researchers, health professionals, and the public understand the condition.
What is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is much more than just feeling tired—it’s a complex, chronic illness that affects every part of a person’s life. Also known as systemic exertion intolerance disease, ME/CFS is defined by severe fatigue that doesn’t improve with rest and is often made worse by even minimal physical or mental activity. This worsening of symptoms after exertion is called post exertional malaise, and it’s a key symptom that sets ME/CFS apart from ordinary tiredness.
ME/CFS is a biological illness that impacts the central nervous system, immune system, and nervous system. People living with this condition often experience extreme fatigue, cognitive impairment (sometimes called “brain fog”), and orthostatic intolerance—meaning they may feel dizzy or unwell when standing up. Because the symptoms are so wide-ranging and can be triggered by both physical and mental activity, managing disease control and symptom relief is crucial for maintaining quality of life.
Early diagnosis of myalgic encephalomyelitis chronic fatigue syndrome is important, as it allows for better management and support. Recognising ME/CFS as a real, biological illness helps ensure that people receive the care and understanding they need, rather than being dismissed or misunderstood.
Fatigue isn’t just tiredness: understanding post exertional malaise
Everyone feels tired now and then. Usually, a good night’s sleep, a weekend off, or even a strong coffee is enough to get you back on track. That’s ordinary tiredness.
Fatigue is different. With ME/CFS, the exhaustion runs much deeper and isn’t relieved by rest. Even small daily tasks—getting dressed, cooking a meal, or having a short conversation—can feel overwhelming.
These are the common symptoms experienced by people with ME/CFS:
- Brain fog or difficulty concentrating
- Muscle or joint pain
- Dizziness or sensitivity to light and sound
- Sleep that feels unrefreshing, no matter how long you rest
These symptoms occur intermittently or can fluctuate over time, making the illness unpredictable and challenging to manage.
This makes fatigue a whole-body condition, not just “being sleepy.” It can affect work, relationships, and independence in ways that outsiders often don’t see.
If you’d like to explore this further, we’ve written more about understanding chronic fatigue syndrome.
Recognising the symptoms: what Chronic Fatigue really feels like
Living with chronic fatigue syndrome means facing a range of symptoms that go far beyond just feeling tired. The most prominent is profound fatigue—a deep, unrelenting exhaustion that doesn’t go away with sleep or rest. But ME/CFS brings with it a host of other symptoms that can make daily life incredibly challenging.
Many people with myalgic encephalomyelitis chronic fatigue syndrome experience muscle pain and joint and muscle pain, which can be constant or flare up after activity. Postural orthostatic tachycardia syndrome is another common issue, causing dizziness, rapid heartbeat, or even fainting when standing up. Other symptoms include a persistent sore throat, tender lymph nodes, and unrefreshing sleep—where you wake up feeling just as tired as when you went to bed.
These symptoms can be unpredictable and vary in intensity, making it difficult to plan or participate in everyday activities. Recognising the full range of symptoms is essential to diagnose chronic fatigue syndrome accurately and to ensure that people receive the right support and treatment for their fatigue syndrome.
How is Chronic Fatigue diagnosed?
Diagnosing chronic fatigue syndrome can be a complex process, largely because its symptoms overlap with many other chronic illnesses. There is currently no single diagnostic test for ME/CFS, so healthcare providers rely on a combination of medical history, physical examination, and established diagnostic criteria to make a diagnosis.
The international consensus criteria for encephalomyelitis chronic fatigue syndrome include persistent and profound fatigue, cognitive impairment, and orthostatic intolerance as core symptoms. Healthcare providers must also carefully rule out other conditions that can cause similar symptoms, such as irritable bowel syndrome, sleep disorders, and psychiatric disorders. This thorough approach helps ensure that the diagnosis is accurate and that other treatable conditions are not overlooked.
A clear understanding of the diagnostic criteria and a careful physical examination are essential for healthcare providers to diagnose chronic fatigue syndrome effectively. Early and accurate diagnosis can make a significant difference in managing symptoms and improving quality of life for those living with fatigue syndrome.
Struggling to manage your energy? Download your copy of the Energy Audit
Why this study matters for efforts to diagnose chronic fatigue syndrome
For years, people with ME/CFS have been dismissed. Many were told it was stress, depression, or “just tiredness.” Some were even encouraged to push through it with more exercise or more willpower—advice that often made their symptoms worse.
That’s why the DecodeME study matters so much. It confirms what people living with chronic fatigue already know: their condition is real, and it’s not their fault.
The findings provide more than just data. They bring validation. They reassure people that they’re not imagining their symptoms, and they encourage health professionals to take fatigue more seriously.
Of course, this study doesn’t mean a cure is around the corner. There’s still no single test or universal treatment. But it does offer hope. Each new discovery is another step towards a clearer understanding of the condition, and eventually, better ways to manage it.
At EP360, we hear this relief often—the difference it makes when someone’s symptoms are finally recognised. As EP360 Exercise Physiologist Alex shared in his story, simply having the condition recognised can make a world of difference – check out Alex’s story with CFS.
Living with systemic exertion intolerance disease: common challenges
Knowing there’s now a biological basis for chronic fatigue is reassuring, but it doesn’t change the day-to-day reality for those living with it. For many, the biggest challenge isn’t just the fatigue itself—it’s how unpredictable and disruptive it can be. Some people experience severe symptoms that can significantly impact their independence and quality of life.
One of the hallmark features of ME/CFS is something called post-exertional malaise (PEM). This is when even a small amount of effort—like a short walk, a phone call, or concentrating on work—leads to a significant worsening of symptoms. The “crash” can last days or even weeks. This makes planning daily life incredibly difficult. Symptoms affect daily functioning and overall well-being, making it challenging to maintain routines and responsibilities.
Other common challenges include:
- Balancing activity and rest: doing too much physical activity can trigger or worsen symptoms, while doing too little can lead to muscle weakness and loss of confidence. Managing physical activity is crucial to prevent flare-ups.
- Invisible symptoms: people often look “well” on the outside, which can lead to misunderstanding from employers, friends, or even family. Mental exertion, such as concentrating on work or studying, can also exacerbate symptoms and contribute to post-exertional malaise.
- Impact on mental health: frustration, isolation, and anxiety are common when your body won’t do what you want it to. Emotional support and counseling are important tools for coping with the challenges of chronic illness.
- Work and social life: maintaining employment, study, or relationships can feel impossible without support and understanding.
This combination of physical, cognitive, and emotional barriers can leave people feeling trapped in a cycle that’s hard to break on their own.
Our chronic fatigue energy audit goes into more detail on how to identify and manage these ups and downs in daily life.
Managing energy – it’s not about pushing harder
One of the most damaging myths about chronic fatigue is the idea that people just need to “push through it” or “build up their stamina.” While that approach might work for ordinary tiredness, it can backfire badly for people with ME/CFS.
The key is energy management, not exhaustion. Trying to push harder often leads to the boom–bust cycle: you have a “good” day, do too much, then crash for days or weeks afterwards. This cycle can make symptoms worse and reduce confidence in trying activities again. Overlapping symptoms with other conditions, such as fibromyalgia, can make it even more challenging to identify triggers and manage energy effectively.
Instead, strategies like pacing can help. Pacing means learning to recognise your energy limits and spreading activity out in a way that avoids major crashes. It can involve:
- Breaking tasks into smaller steps
- Planning rest before and after activity
- Using tools like heart rate monitoring to track exertion
- Building routines that match your personal energy patterns
This approach might sound simple, but in practice it’s tricky—especially without support. That’s where working with a health professional, such as an exercise physiologist, can make a real difference. We can help clients identify their limits, plan safe activity, and gradually build confidence in what their bodies can do.
The goal isn’t to “cure” fatigue—it’s to support people to live as well as possible within their capacity.
The role of movement and exercise physiology
Movement can be powerful for people living with chronic fatigue – but it has to be the right kind of movement, introduced at the right pace. Physical activity must be carefully managed, as it can trigger or worsen symptoms in people with ME/CFS. Too much, too soon can trigger setbacks. Too little, and people risk losing strength, mobility, and independence.
This is where exercise physiology comes in. Our role isn’t to push clients through hard workouts. Instead, it’s to support them in finding safe, sustainable ways to move that match their current energy levels.
An exercise physiologist can help with:
- Gentle activity to maintain function without overloading the body
- Monitoring and adjusting sessions to match day-to-day fluctuations in fatigue
- Education on pacing and energy conservation strategies
- Confidence building so movement feels safe again, not scary
- Collaboration with GPs, physios, and other health professionals to ensure care is consistent
At EP360, we often work with people who feel nervous about exercise because of past crashes or flare-ups. Our approach is built on listening first, then finding ways to integrate movement that supports—not undermines—daily life.
The aim is not to chase unrealistic outcomes, but to help people live more comfortably and confidently with the energy they have.
When fatigue gets complicated: understanding the risks
Chronic fatigue syndrome is not just a matter of feeling tired—it can lead to serious disability if not properly managed. Several risk factors can increase the likelihood of developing ME/CFS, including viral infections, mental health problems, and emotional stress. In some cases, people with ME/CFS may also develop other chronic illnesses, such as fibromyalgia or postural orthostatic tachycardia syndrome, which can further complicate their health.
Because the symptoms of fatigue syndrome can be so severe and wide-ranging, it’s essential for healthcare providers to work closely with patients to develop a comprehensive treatment plan. This may include approaches like graded exercise therapy, cognitive behavioral therapy, and medication to help with symptom relief. Understanding the risks and potential complications of ME/CFS allows for better disease control and more effective support.
By addressing both the physical and mental aspects of the condition, healthcare providers can help reduce the risk of serious disability and improve the overall well-being of those living with this challenging chronic illness.
Hope for the future (but support matters now)
The DecodeME study is a major step forward. For the first time, researchers have identified genetic differences that may help explain why ME/CFS develops in some people. While this doesn’t translate to a cure today, it does open the door to new possibilities for the future—better testing, more targeted treatments, and, most importantly, greater recognition of the condition. Viral infection is also recognised as one of the potential triggers for ME/CFS, and ongoing research is exploring this link.
But research takes time. For those living with chronic fatigue right now, the focus has to be on finding ways to manage daily life. Small, consistent strategies—like pacing, gentle movement, and supportive routines—can make a real difference to quality of life.
And while there’s no single pathway that works for everyone, there is one constant: you don’t have to manage it alone. Support from health professionals, family, and community can help reduce the burden and bring back a sense of control.
You’re not alone
If you’re living with ongoing fatigue, it’s important to know this: your symptoms are real, and there are ways to find support.
At EP360, we work with clients living with fatigue to explore safe, realistic ways to move, conserve energy, and rebuild confidence. We don’t promise quick fixes—but we do promise care, connection, and strategies that respect your limits.
If fatigue has been holding you back, you don’t have to push through it alone. We’re here to help you find practical steps forward.
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