Before you read on, please have a look at the disclaimer. If reading a few hundred words isn’t in the tank today, skip to the TL;DR at the end.
Chronic fatigue syndrome, or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), is a neurological condition that can affect many different systems in the body. There is currently “no diagnostic test, validated biomarker, clear pathophysiology, or curative treatment” (Sandler & Lloyd, 2020).
So its effects are wide-ranging, we don’t know why it happens, and we can’t reliably test for it. None of that changes the fact that ME/CFS is real and debilitating, and can strip away a person’s quality of life. People living with it aren’t tired or lazy. Fatigue is a different thing altogether, and often close to impossible to put into words.
The hallmark symptom: post-exertional malaise
The symptom that defines ME/CFS is post-exertional malaise (PEM): your symptoms worsen and your functional capacity drops after physical or cognitive activity, and that includes emotional, social, and spiritual effort. How hard PEM hits and how long it lasts varies widely from person to person, depending on the severity of the condition and how demanding the activity was.
The core symptoms of ME/CFS
Three symptoms sit at the centre of ME/CFS:
- a substantial drop in functioning with profound fatigue lasting more than six months
- post-exertional malaise
- unrefreshing sleep
Those three aren’t quite enough for a diagnosis on their own. You also need one or both of the following: cognitive impairment (brain fog), or orthostatic intolerance (symptoms like palpitations, dizziness, nausea, or sweating that ease when lying down).
Beyond these, there’s a long list of symptoms that can come along for the ride, and everyone’s list is different and prone to change. Common ones include chronic muscle or joint pain, muscle weakness, sensory sensitivities, and gastrointestinal issues. That’s far from the full picture.
Managing ME/CFS: pacing, not pushing
There’s no cure for ME/CFS, but symptoms can be managed and quality of life improved. A 2010 survey of more than 4,000 people in the UK found that activity pacing was rated the most acceptable and effective approach, alongside rest.
Activity pacing is a self-management strategy for balancing what you do against the energy you have. It starts from the idea that every activity, physical or mental or emotional, has an energy cost, and that spreading those costs across the day or week lowers the risk of a crash while keeping activity steady.
A word on what pacing is not. It is not Graded Exercise Therapy (GET), which increases activity on a fixed schedule regardless of how you feel. For a condition defined by PEM, pushing through symptoms tends to backfire and feed the boom-bust cycle: a good day, too much done, then a crash that costs days or weeks. Pacing works the other way, staying inside your energy envelope rather than fighting it.
You’re not alone
Whether you’re newly diagnosed or have been living with fatigue for years, you don’t have to work ME/CFS out on your own. I hope this has given you a clearer sense of what the condition is and why it’s so hard to manage, and the aim from here is practical, easy-to-use guidance that meets you where you are. If you have questions, feedback, or want to share your own experience, I’d like to hear from you. Email me at alex.burjan@ep360.com.au.
Alex
TL;DR: understanding ME/CFS
- ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a complex neurological condition with no known cause, test, or cure.
- It affects multiple systems in the body and varies a lot from person to person.
- It’s real and debilitating, far more than being “tired” or “lazy”.
- The core symptom is post-exertional malaise (PEM): symptoms flare after physical, mental, or emotional effort.
- The three central symptoms are a substantial, lasting drop in functioning with profound fatigue (6+ months), PEM, and unrefreshing sleep.
- Diagnosis also needs one or both of: cognitive impairment (brain fog), or orthostatic intolerance (dizziness, palpitations, and similar, easing when lying down).
- Many people also have muscle or joint pain, weakness, sensory sensitivities, and gastrointestinal issues.
- There’s no cure, but symptoms can be managed.
- Activity pacing is one of the most effective self-management strategies: it balances energy use across the day and week and reduces crashes while keeping activity steady. It is not Graded Exercise Therapy, and it doesn’t mean pushing through symptoms.
- Questions, feedback, or your own story? Email alex.burjan@ep360.com.au.
- Living with chronic fatigue? Our Beyond Fatigue Program at EP360 Exercise Physiology runs online, or in person at our Five Dock clinic if you have the energy for it.
References
Sandler, C., & Lloyd, A. (2020). Chronic fatigue syndrome: progress and possibilities. Medical Journal of Australia, 212. https://doi.org/10.5694/mja2.50553
Frequently asked questions
What is chronic fatigue syndrome?
Chronic fatigue syndrome, also known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), is a complex neurological condition that affects multiple systems in the body. It causes profound, persistent fatigue lasting more than six months, along with a range of other symptoms. There’s currently no diagnostic test or cure, but symptoms can be managed with the right support.
What are the main symptoms of ME/CFS?
The three core symptoms are significant, persistent fatigue lasting more than six months, post-exertional malaise (PEM), and unrefreshing sleep. A diagnosis also requires either cognitive impairment (brain fog) or orthostatic intolerance: symptoms like dizziness, palpitations, or nausea that ease when lying down. Many people also have chronic muscle or joint pain, sensory sensitivities, and gastrointestinal issues.
What is post-exertional malaise (PEM)?
Post-exertional malaise is the hallmark symptom of ME/CFS. It’s a worsening of symptoms and a drop in functional capacity after physical, cognitive, emotional, or social activity. Its severity and duration vary from person to person, and even minor activity can trigger a significant crash.
Can exercise help with ME/CFS?
Exercise needs care with ME/CFS. Activity pacing, which balances activity against available energy, is one of the most widely accepted and effective approaches. We don’t recommend Graded Exercise Therapy or pushing through symptoms, as that can worsen the condition. An accredited exercise physiologist can help you build a safe, individual plan that works within your energy limits rather than against them. This information is general and doesn’t replace personalised advice from a qualified health professional.
Where can I find an exercise physiologist for ME/CFS in Sydney?
EP360 Exercise Physiology runs a dedicated Beyond Fatigue Program, led by Senior Exercise Physiologist Alex Burjan. It’s delivered online, or in person at our Five Dock clinic for those who have the energy for in-person sessions. The program is designed for people living with ME/CFS, post-viral fatigue, and Long COVID. To find out if it’s a fit, visit our Beyond Fatigue Program page or get in touch.
