Fatigue is one of those things we’ve all felt. We blame it on late nights, never-ending deadlines, overthinking, or simply juggling too many roles at once. But what happens when that tiredness becomes relentless? When it doesn’t fade after rest and worsens with even the smallest effort?
For millions of people everywhere, this is not a phase of any kind, it's a condition that quietly takes control of their lives. And most of them have no idea it's got a name.
What is ME/CFS, and Why Haven’t You Heard of It?
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS, is a severe, chronic illness that impacts many of the body's systems, especially the nervous, immune, and metabolic systems. And yet, it remains misunderstood and misdiagnosed at alarming rates. Globally, the prevalence of ME/CFS is estimated to be between 17 and 24 million people, according to the American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society.
Why Is It So Difficult to Diagnose?
“ME/CFS tends to be mistaken for depression, anxiety, or even plain burnout. This is, in great part, because its symptoms: fatigue, lack of ability to concentrate, and sleep disturbances easily point towards more common illnesses, such as depression or anxiety. Even physicians can overlook it unless they are on the lookout for it,” said Dr Amit Saraf, Group Quality Head, Director - Internal Medicine Department, Jupiter Hospital, Thane.
According to a 2021 study, despite its severity, it's estimated that up to 91% of individuals with ME/CFS in the United States remain undiagnosed, often due to the condition's ambiguous symptoms and lack of definitive diagnostic tests.
“As a result, many individuals with ME/CFS are misdiagnosed or told that their symptoms are ‘all in their head.’ The lack of a definitive test makes diagnosis difficult, but increasing awareness of this condition could help doctors make a more accurate diagnosis and provide better care for affected individuals.
The biggest challenge with Chronic Fatigue Syndrome (ME/CFS) is the invisibility of the illness; many people suffer in silence, unaware of the condition’s existence or that help is available,” added Dr Sheetal Goyal, consultant neurologist at Wockhardt Hospitals, Mumbai Central.
Also Read: Expert Shares When Should You Be Concerned About Fatigue | Can It Be A Neurological Condition?
Recognising the Symptoms
ME/CFS doesn’t just cause tiredness, it causes unrelenting exhaustion that doesn’t improve with rest. People often describe it as ‘a crash’ after minimal physical or mental effort. This phenomenon, called post-exertional malaise, is a hallmark of the condition.
Common symptoms include:
- Severe, persistent fatigue lasting more than six months
- Inability to concentrate or brain fog (often called cognitive dysfunction)
- Unrefreshing sleep
- Muscle or joint pain
- Dizziness, especially when standing
- Worsening of symptoms after activity or stress
Many patients experience a fluctuating illness course; good days followed by major crashes. This unpredictability can make it difficult to hold down a job, maintain relationships, or even carry out daily tasks.
What Causes ME/CFS?
According to the Centers for Disease Control and Prevention (CDC), the exact cause of ME/CFS remains unclear, leading researchers to investigate various potential factors. These include infections, energy metabolism, immune responses to infections, inflammation, toxins or injuries, and genetic influences.
Occasionally, ME/CFS occurs in multiple family members, indicating that genetics and environmental factors may contribute to the condition, as suggested by studies involving twins and families. However, the specific genes or environmental triggers responsible for ME/CFS have not yet been identified, indicating a need for further research.
What Can You Do?
If you've been experiencing persistent fatigue, brain fog, or other unexplained symptoms for six months or longer, talk to a doctor, preferably one who understands post-viral syndromes or functional medicine. Be specific about your symptoms, especially if you feel worse after exertion. While there is currently no cure for ME/CFS, management strategies like pacing (energy conservation), symptom-specific treatments, and psychological support can dramatically improve quality of life.
[Disclaimer: This article contains information provided by an expert and is for informational purposes only. Hence, we advise you to consult your professional if you are dealing with any health issue to avoid complications.]