Decoding a Debilitating Illness

Characterised by extreme exhaustion lasting at least six months, unrelieved by rest, and worsened by exertion, chronic fatigue syndrome disrupts daily life and poses unique diagnostic and treatment challenges.
By Professor(Dr) Suneela Garg/Dr Arvind Garg/Dr Kinshuk Gupta

Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (ME/CFS), is a complex illness defined by a profound and debilitating weariness that significantly impairs an individual’s ability to carry out daily activities such as working, attending school, or even performing basic tasks like showering. This fatigue must persist for at least six months to meet the diagnostic criteria for ME/CFS and is unrelenting in nature, meaning it is not alleviated by rest or sleep. Instead, it often worsens with physical or mental activity, a phenomenon known as post-exertional malaise (PEM). Beyond fatigue, ME/CFS presents a wide range of symptoms that further complicate the lives of those affected. Individuals often experience cognitive difficulties, commonly referred to as “brain fog,” which makes it challenging to focus, remember information, or make decisions. Sleep disturbances are prevalent, with many facing insomnia, excessive sleep, or a persistent feeling of being unrefreshed after rest. Additional symptoms include muscle and joint pain, headaches, sore throats, and tender lymph nodes, all of which contribute to the severe and persistent nature of the condition. The intensity of these symptoms often limits a person’s ability to engage in everyday activities, making ME/CFS a profoundly life-altering illness that requires careful management and understanding.

Challenges in Diagnosis and Epidemiology in the Indian Context
Diagnosing ME/CFS is a complex process due to the absence of a specific test, requiring doctors to rule out other potential causes of fatigue through a thorough medical examination and a detailed health history. In India, this challenge is exacerbated by a lack of awareness, often leading to misdiagnosis. Fatigue is frequently attributed to nutritional deficiencies, such as anaemia, or other conditions, which delays the accurate identification of ME/CFS. The epidemiology of ME/CFS suggests a prevalence ranging from 0.007 per cent to 2.8 per cent in the general adult population globally, with women being more affected than men, particularly those aged between 40 and 70 years. In primary care settings, prevalence ranges from 0.006 per cent to 3.0 per cent, while a global estimate based on the 1994 diagnostic criteria from the Centers for Disease Control and Prevention (CDC) reports a prevalence of 0.89 per cent. Some studies suggest a higher prevalence among White non-Hispanic individuals compared to other ethnic groups, though research on racial and ethnic differences is ongoing. In the Indian context, specific large-scale data is limited, but a survey published in the British Medical Journal found that over 12 per cent of women aged 18 to 50 reported chronic fatigue, highlighting the disproportionate impact on women. Key risk factors in India include socioeconomic hardship, gender disadvantage, and poor mental health, with lower socioeconomic status and minority cultural or ethnic groups potentially showing higher prevalence rates. The cause of ME/CFS remains unknown, but several theories are under investigation, including immune system dysfunction, viral infections, genetic factors, and environmental toxins. There is also growing concern that Long COVID, a condition following COVID-19 infection, may increase the number of individuals meeting the diagnostic criteria for ME/CFS. In India, infections, stress, and environmental factors can also trigger or contribute to the condition, further complicating diagnosis and treatment.

Public Health Implications and Socioeconomic Burden
ME/CFS carries significant public health implications due to its profound impact on individuals’ health-related quality of life (HRQoL), disability, and economic costs. Compared to other chronic conditions like cancer or rheumatic arthritis, ME/CFS significantly lowers HRQoL, affecting daily activities, social interactions, and overall enjoyment of life. The severe symptoms, including fatigue, cognitive impairment, and PEM, often lead to substantial functional impairment, with some patients unable to work, attend school, or even leave their homes due to the severity of their condition. This functional limitation results in individuals and families facing direct healthcare costs, lost productivity, and disability-related expenses. Many individuals with ME/CFS struggle to maintain employment or complete educational programmes, further exacerbating financial strain. Social isolation is another significant consequence, as the reduced ability to participate in social activities leads to feelings of loneliness, a critical issue given that social connection is a basic human need. Additionally, ME/CFS patients often require increased healthcare utilisation, including frequent doctor visits, specialist consultations, and therapies, which drive up healthcare costs. The condition also contributes to mental health challenges such as depression and anxiety, compounded by the stigma and discrimination individuals may face due to a lack of understanding about the illness. This lack of awareness can lead to dismissive attitudes, further isolating those with ME/CFS and hindering their ability to seek support or treatment, ultimately worsening the overall burden of the disease on both individuals and society.

Strategies for Management and Advocacy
While there is no cure for ME/CFS, treatment focuses on managing symptoms and improving quality of life through a multidisciplinary approach tailored to the individual’s needs. Medications such as antidepressants or pain relievers may be used to address specific symptoms like depression or chronic pain, while non-pharmacologic techniques, including deep breathing, muscle relaxation, massage, acupuncture, and cognitive behavioural therapy, can help manage stress and improve overall well-being. Lifestyle modifications are also crucial, such as establishing good sleep hygiene, practising activity pacing to avoid triggering PEM, and adopting a balanced diet to support overall health. Managing stress and seeking professional guidance are equally important for those living with ME/CFS, a condition that often persists lifelong, with full recovery—defined as a return to pre-illness functioning—being rare and estimated at less than 10 per cent. For some individuals, symptoms may improve over time, allowing them to do more, but this is typically a slow and gradual process. Addressing the broader public health implications requires increased awareness and education to reduce stigma, encourage early diagnosis, and improve understanding of ME/CFS among both healthcare providers and the public. Advocacy for policy changes is essential to ensure access to disability benefits, reasonable accommodations, and improved healthcare coverage for those affected. Developing support systems, such as peer support groups, counselling services, and vocational rehabilitation programmes, can enhance quality of life and enable greater societal participation. Continued research into the causes, diagnosis, and treatment of ME/CFS is vital, as is improved access to specialised healthcare services, including multidisciplinary teams of professionals in sleep, pain management, and mental health, to better manage this debilitating condition and support those living with it.