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Chronic fatigue Syndrome (CFS), commonly known as Myalgic Encephalomyelitis (ME) is a complex and challenging condition that results in severe tiredness that is barely relieved by rest and frequently increases with physical or mental exertion. Despite the serious effect on quality of life, the exact reason is unknown, making diagnosis and therapy very difficult.

In the United States, the Centers for Disease Control and Prevention (CDC) estimates that between 836,000 to 3.3 million people are affected by ME/CFS. This range reflects the challenges in diagnosing the condition, as many cases remain unrecognized due to lack of awareness and understanding.

Considering the challenges encountered in recognizing and understanding ME/CFS, these prevalence figures should be considered with caution. Continuous research and new diagnostic criteria are needed for more precise estimations and raise awareness and treatment of this condition.

In India, data on the of cases of CFS/ME are not present in a huge number, and the mostly condition remains underdiagnosed and underreported because this condition can be misunderstood by general exertion. A community-based study was conducted in rural Andhra Pradesh published in Cureus 2023 found that 21.4% of post-COVID-19 patients met the criteria for CFS, with higher prevalence observed among older adults, females, and individuals with comorbidities.

Causes and Risk Factors

The cause of CFS/ME is not completely known, yet researchers have identified a few significant factors, such as:

1. Viral Infections – Certain viral infections, such Epstein-Barr Virus (EBV), Human Herpesvirus 6 (HHV-6), and enteroviruses, have been associated with the onset of CFS/ME.
2. Immune System Dysfunction – Research indicates that individuals with CFS/ME often exhibit irregularities in immune system function, such as altered cytokine profiles and impaired natural killer (NK) cell activity.
3. Hormonal Imbalances – .One of the primary hormonal disruptions observed in CFS patients is dysfunction of the Hypothalamic-Pituitary-Adrenal (HPA) axis, which regulates cortisol production. Body response to stress is maintaied by cortisol. Many individuals with CFS have low cortisol levels and abnormal daily rhythm, contributing to fatigue, poor stress response, and immune dysfunction.

Women with CFS often experience an increase in symptoms during hormonal shifts in their menstrual cycles.

1. Physical or Emotional Trauma –  Any kind of emotional or physical trauma, such as major surgery, accidents, or significant psychological stress, may act as triggers and cause CFS /ME.
2. Genetic Predisposition – Family history studies indicate a potential genetic component, with higher incidence rates observed among first-degree relatives.
3. Environmental Factors – Exposure to environmental toxins or chronic stress may also contribute to disease development.

Clinical Presentation and Symptoms

The primary symptom of CFS/ME is constant, unexplained fatigue that lasts more than six months and severely restricts everyday activity. Unlike typical tiredness, persistent tiredness is not relieved by sleep or rest. Other common symptoms are:

1. Post-Exertional Malaise (PEM):It refers to the delayed worsening of symptoms that happens 24 to 48 hours following minimal physical or mental activity. The delay can lead healthcare professionals and patients to believe that the symptoms flare-ups are random and not linked to a trigger because they are not associated with their declining condition to anything that occurred days before.
2. Unrefreshed Sleep: Mostly, our patients complain of not feeling refreshed even after long hours of rest.
3. Cognitive Impairments: Most of the patients also complain of having difficulty in concentrating, memory issues, and slowed information processing. This condition is also termed as “Brain fog.”
4. Muscle and Joint Pain: The Major complaint will be pain throughout the body without any signs of inflammation.
5. Headaches: Headaches and migraines are one of the most common signs.
6. Dizziness and Orthostatic Intolerance: Issues with maintaining balance. The patient also complains of feeling unbalanced while walking.
7. Sore Throat and Tender Lymph Nodes: Symptoms mimicking chronic viral infections, such as cough and swollen lymph nodes with tenderness.
8. Mood Disturbances: Depression and anxiety may develop as secondary conditions due to long-term illness and social isolation for the same

Diagnosis

There is currently no single diagnostic test for CFS/ME. Diagnosis is made through:

1. Exclusion of Other Conditions: Disorders like hypothyroidism, sleep apnea, and major depressive disorder must be ruled out.
2. Specific Criteria: The Centers for Disease Control and Prevention (CDC) and Canadian Consensus Criteria provide diagnostic frameworks based on symptom presentation.
3. Medical History and Physical Examination: A thorough medical history and physical assessment are essential to identify symptom patterns.

Diagnostic challenges often lead to delayed treatment and patient frustration, further emphasizing the need for greater awareness among healthcare providers.

Management and Treatment

While there is no cure for CFS/ME, a multidisciplinary approach may offer symptom reduction and improve quality of life. Adopting effective changes in lifestyle is an essential part of CFS/ME management. These changes help in minimizing symptom flare-ups and boost general health.

1. Pacing and Energy Management is a self-management technique that involves scheduling and balancing activities in order to prevent overexertion. Individuals with CFS/ME have variable energy levels, and even the most minor physical or mental activity can cause lasting exhaustion known as post-exertion malaise (PEM).
2. Pacing helps to avoid such incidents by staying within the body's energy limitations. Important strategies include Activity Planning, which is  splitting activities into smaller, manageable tasks and spreading them throughout the day. Scheduled rest periods that include short, frequent stops before feeling tired and the Energy Envelope Concept, that focuses on understanding one's personal energy limits and keeping within those boundaries.
3. A nutritious diet and sufficient water intake are critical to managing CFS/ME. A well-balanced diet includes vital nutrients for energy production, immune system health, and tissue repair.
4. Maintaining adequate water intake is equally important for mental clarity, joint function, and fatigue management. A focus on nutrient-dense foods such as whole grains, lean proteins, fruits, and vegetables offers a consistent supply of vitamins and minerals.
5.  Anti-inflammatory foods high in omega-3 fatty acids (such as fish, flaxseeds, and walnuts) help regulate inflammation, which can contribute to symptoms. To avoid energy spikes and crashes, avoid processed foods and limit consumption of high-sugar and highly processed goods.
6. Sleep hygiene is necessary for recovery and symptom control in CFS/ME patients. Many people with the medical condition have sleep difficulties, such as insomnia, unrefreshing sleep, and interfered with sleep cycles.
7. Enhancing your sleeping habits can help you get more restorative rest. Maintaining a Consistent Sleep Schedule by going to bed and waking up at the same time every day, engaging in a Pre-Sleep Routine with calming activities like reading or gentle stretching, Minimizing Disruptions through minimizing exposure to screens, bright lights, and stimulants like caffeine or heavy meals close to bedtime, and Optimizing the Sleep Environment by making sure the bedroom is cool, dark, and quiet. By practicing good sleep hygiene, individuals with CFS/ME can improve their sleep quality.

These modifications to lifestyles, when followed consistently, may significantly enhance symptom management for those with CFS/ME. The objective is to manage energy mindfully, eat appropriately, and get enough sleep, all of which serve as the foundation for better health and function.

Medications

Pain Relievers: NSAIDs and acetaminophen for muscle and joint pain.

Antidepressants: SSRIs and SNRIs may help manage mood disturbances and improve sleep.

Sleep Aids: Prescribed cautiously to aid restorative sleep.

Cognitive Behavioral Therapy (CBT)

CBT helps patients manage thoughts and behaviors related to chronic illness, improving coping mechanisms.

Graded Exercise Therapy (GET) (Controversial)

While some patients report improvement, others experience symptom exacerbation. Its use remains debated within the medical community.

Challenges and Stigma

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is often interpreted incorrectly by family, employers, and even medical professionals. Patients are sometimes mistakenly labeled as slow-moving or simply depressed, which leads to misdiagnosis, delayed treatment, and greater social exclusion. Misconceptions and stigma offer significant barriers to receiving appropriate medical care and social support. Greater understanding and awareness are crucial for breaking up these barriers and providing the kind of compassionate care which CFS/ME patients require, so improving recovery and well-being.

Awareness and Advocacy

International ME/CFS Awareness Day is observed on May 12, symbolized by the color blue. Awareness campaigns aim to:

1. Promote early diagnosis and effective treatment.
2. Reduce stigma and misconceptions.
3. Encourage research into potential causes and treatments.
4. Support affected individuals and their families.

Conclusion

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis is a severe enough, life-threatening condition that requires greater awareness, compassion, and research. Early identification, patient-centered care, and awareness are essential for improving the quality of life of those suffering. Understanding and verifying patient experiences can lead to better diagnosis, management, and, eventually, therapeutic improvements.