By Mojibola OrefujaHave you ever heard of Chronic Fatigue Syndrome? Well, I hadn’t … up until about a year ago when I came across a patient with this diagnosis. I was so fascinated but my medical brain went straight to the question – how do you diagnose someone with Chronic Fatigue Syndrome? Isn’t that constant tiredness? And if so, surely every one in today’s current climate as this disease? These questions were, of course, born from of a place of misunderstanding and I set out to try and understand a little bit more about what exactly chronic fatigue syndrome was.
What is it?
ME/CFS is a chronic illness that causes overwhelming fatigue that isn’t relieved by rest. But it’s so much more than that. Let’s start with the full medical term: Myalgic Encephalomyelitis. That’s quite a mouthful, so here’s a simple breakdown:
- Myalgic – relating to muscle pain.
- Encephalo – referring to the brain.
- Myelitis – inflammation of the spinal cord.
Put it all together, and it paints a picture of a condition involving pain, brain fog, and inflammation of the nervous system.
ME/CFS often shows up as deep, persistent exhaustion; a “crash” after doing even small amounts of physical or mental activity; poor sleep that doesn’t leave you feeling refreshed; cognitive issues (often called “brain fog”) etc. Symptoms can start suddenly—often after an infection—or come on more gradually. But what they all have in common is that they stick around for at least six months, can’t be explained by another medical condition, and don’t improve with rest.
Causes and Risk Factors
You might be surprised to hear that ME/CFS affects somewhere between 100 and 700 out of every 100,000 people. That’s a pretty wide range, mostly because many people go undiagnosed or misdiagnosed. bIt can affect anyone, but women are 2–3 times more likely to develop it than men. It can also show up at any age, although it’s more commonly diagnosed in adults between 40 and 60.
ME/CFS doesn’t have a single known cause. In many cases, symptoms seem to start after a viral or bacterial infection, which has led researchers to believe that the immune system may play a role. But so far, no specific virus, bacteria, or pathogen has been found to consistently cause the condition. Other theories include issues with energy production in cells, hormonal imbalances, or even dysfunction in the nervous or immune system. But nothing is conclusive—yet. What we do know is that this condition is very real, and very debilitating for many people.
Signs and Symptoms
Living with ME/CFS can be incredibly challenging. Most people with the condition find it hard to do things they once took for granted—like cooking, cleaning, working, or even just socializing. The most common and significant symptom is fatigue—but not your regular “I didn’t sleep well” kind of tired. This fatigue is deep, long-lasting, and worsens with even minor physical or mental effort. This is called post-exertional malaise, and it’s a hallmark of ME/CFS (2).
Other common symptoms include:
- Sleep that doesn’t feel restful.
- Brain fog or difficulty concentrating.
- Dizziness, especially when standing up.
- Muscle aches or joint pain.
- Frequent sore throats.
- Headaches.
- Digestive issues like bloating or nausea.
Because the symptoms can vary so much from person to person, doctors often describe ME/CFS in terms of severity:
- Mild: You can still get around and manage basic tasks, but you’ve had to cut back significantly on work, social life, or hobbies.
- Moderate: You need to rest often, and everyday activities like getting dressed or making meals become difficult.
- Severe: You’re mostly housebound, unable to manage daily activities without help.
- Very severe: You’re mostly bed-bound and need support with nearly everything, including eating and personal care.
Diagnosis
Diagnosing ME/CFS isn’t straightforward. There’s no single blood test or scan that confirms it. Instead, it’s considered a diagnosis of exclusion—meaning doctors first rule out other possible causes for the symptoms. This can include checking for anaemia, thyroid issues, sleep disorders, and autoimmune diseases, among others.
One useful tool is something called the DePaul Symptom Questionnaire, which helps track how often and how severely a person experiences typical ME/CFS symptoms. It includes 54 items and can give doctors a clearer picture of what’s going on (1).
While this process can feel frustrating and slow, it’s crucial to rule out other conditions before settling on an ME/CFS diagnosis. That said, many patients go through years of testing and searching for answers before they finally get the right diagnosis.
Treatment
Unfortunately, there’s currently no cure for ME/CFS. But that doesn’t mean there’s no hope. Treatment focuses on managing symptoms, improving quality of life, and offering support. Here are a few approaches (1,2):
- Pacing and energy management: This is a technique where people learn to balance activity and rest to avoid crashing after overexertion.
- Medications: While there’s no specific drug for ME/CFS, medications may be used to treat symptoms like pain, sleep issues, anxiety, or depression.
- Counselling and support groups: Living with ME/CFS can feel incredibly isolating. Connecting with others who understand can make a big difference.
- Lifestyle changes: Prioritizing rest, good nutrition, and gentle movement (if tolerated) can help some people feel a bit more in control.
What’s promising is that researchers are actively studying ME/CFS more than ever before. There’s hope that in the coming years, we’ll have better diagnostic tools and more effective treatments.
If you or someone you love is living with ME/CFS, please know this: you’re not alone, and your symptoms are real.
This condition may be invisible to others, but its impact is anything but. The fatigue, pain, and brain fog can be life-altering. But with the right support, tools, and compassion—from healthcare providers, family, and communities—life can still hold meaning, comfort, and connection.
Even though there’s still a lot we don’t know about ME/CFS, we do know that validation and understanding go a long way. And as awareness grows, so does the push for better research, better treatments, and better care.
So, if you’re on this journey, take it one step at a time. Be kind to yourself. And remember—your story matters.
References
- BMJ Best Practice. Myalgic encephalomyelitis/chronic fatigue syndrome [Internet]. London: BMJ Publishing Group; c2024 [cited 2025 Apr 15]. Available from: https://bestpractice.bmj.com/topics/en-gb/277
- Centers for Disease Control and Prevention. About ME/CFS [Internet]. Atlanta (GA): CDC; 2023 [cited 2025 Apr 15]. Available from: https://www.cdc.gov/me-cfs/about/index.html