Why there needs to be more awareness about chronic fatigue syndrome in India

The Hindu

13-05-2025

Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is often mistaken for routine tiredness or exhaustion, but experts stress that it is a far more complex and debilitating condition. Characterised by extreme fatigue that lasts for at least six months, is not alleviated by rest, and severely impacts daily functioning, CFS remains poorly understood -- particularly in the Indian context, where research and awareness are limited. While it can affect anyone, it is more frequently diagnosed in women.
According to the World Health Organization (WHO), there is still no universally accepted diagnostic framework for CFS. The condition typically involves persistent, unexplained fatigue accompanied by symptoms such as sleep disturbances and post-exertional malaise, making it challenging to identify and manage effectively.
While precise figures are scarce, estimates suggest that a significant portion of the Indian population may be affected by CFS or ME/CFS. One study indicated that a population-based survey of 3,000 randomly selected women aged 18-50 found that more than 12% reported chronic fatigue. Another study says that more than a million Indians are diagnosed with CFS annually
Fatigue vs. chronic fatigue syndrome
According to Preetha Purushothaman, consultant neurologist, Prashanth Hospital, Chennai, the diagnosis of CFS is not straightforward and is often arrived at through a process of exclusion. 'We don't see it daily. In the case of chronic fatigue syndrome, it is like a diagnosis of exclusion. We exclude all other diseases and then, at last, when we don't know where to place the patient, that is when we call it chronic fatigue syndrome,' she explains.
Dr. Purushothaman points out that most forms of fatigue encountered in clinics have identifiable causes — ranging from diabetes, cardiac conditions, cancer, to even side-effects of medications such as antibiotics.
'Fatigue is often associated with an underlying illness. Someone living with diabetes, for instance, will definitely experience fatigue. But that cannot be labelled as chronic fatigue syndrome,' she clarifies. She adds that even common antibiotics such as azithromycin can induce severe tiredness. In such contexts, the fatigue is symptomatic of another ailment, not stand alone.
Whom it affects
Typically, CFS tends to manifest between the ages of 30 and 60, often in individuals who show no signs of thyroid dysfunction, cardiac conditions, or diabetes. Dr. Purushothaman describes a pattern of unexplained fatigue, unresponsive to rest and unlinked to nutritional or hormonal deficiencies.
'The only thing common among such patients is severe stress — the kind of stress that comes from intense trauma or grief-- like the loss close ones. This isn't normal stress. It's bereavement at an extreme level,' she says.
Viral infections are also known triggers. 'Viruses such as the Epstein-Barr virus, cytomegalovirus, and other herpes group infections have been known to act as triggers,' Dr. Purushothaman explains. 'But most recently, the cases we saw were after COVID-19. Long COVID is practically equivalent to chronic fatigue syndrome.'
She adds that some patients have remained under follow-up for up to three years, experiencing lingering symptoms such as persistent fatigue, with no other physical anomalies detectable through standard medical investigations.
Often misdiagnosed condition
CFS overlaps multiple domains -- neurology, psychiatry, and internal medicine --requiring a multidisciplinary approach for accurate diagnosis and effective treatment.
According to the WHO, Chronic Fatigue Syndrome (CFS) is primarily considered a neurological disorder, as it involves abnormalities in brain function and the nervous system, particularly in the regulation of neurochemicals that influence energy, pain tolerance, and mood. In India, the condition often goes underdiagnosed or misattributed to lifestyle factors, nutritional deficiencies like vitamin B12 or iron, or even psychiatric issues due to a lack of widespread awareness and limited dedicated programmes or policies.
Himanshu Champaneri, senior consultant, department of neurosurgery, Marengo Asia Hospitals, Gurugram, says many patients present with persistent fatigue, sleep disturbances, or unexplained pain for over six months, often triggered by stress, life transitions, or burnout -- especially young working adults.
The underlying neurochemical imbalances are similar to hormonal deficiencies such as those in thyroid or insulin regulation, bringing to light the fact that mental health and neurological disorders often overlap. Despite being a significant issue, CFS is not yet a public health priority in India, though awareness is gradually rising post-COVID, with more urban cases and organisational responses being observed.
Diagnosis and management
There is no single drug that cures chronic fatigue syndrome, nor is there a uniform treatment plan. Management of CFS involves a multidisciplinary approach, led primarily by lifestyle modification and supportive therapy.
According to studies in The Lancet CFS is complex since it is a multi-system disease with varied symptoms and potential triggers, including infections, genetic factors, and immune system dysfunction.
Studies recommends cognitive behavioral therapy (CBT) and graded exercise therapy (GET) as effective treatments for chronic fatigue syndrome (CFS). A 2020 study published in the Journal of the Royal Society of Medicine highlights that while most evidence supporting cognitive behavioural therapy (CBT) for chronic fatigue syndrome (CFS) comes from randomised controlled trials, there is limited research in real-world clinical settings. Nonetheless, the study confirms that CBT remains an effective approach for improving fatigue, physical functioning, and social adjustment in individuals with CFS.