International ME/CFS Awareness Day: More Than Just Tiredness

International May 12th Awareness Day, also known as International ME/CFS Awareness Day, was founded by Thomas Hennessy to bring global attention to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The date, May 12, was chosen in honor of Florence Nightingale’s birthday (1820–1910), the trailblazing founder of modern nursing. Although ME/CFS had not yet been defined during her lifetime, Nightingale reportedly suffered from a debilitating chronic illness following a bacterial infection, leaving her frequently bedridden in her later years. Many medical historians now believe her symptoms closely resembled those of ME/CFS.

Myalgic encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), was recently renamed Systemic Exercise Intolerance Disease (SEID). It is characterized by severe, persistent exhaustion that significantly limits daily activities and is not relieved by rest. CFS/ME is a severe illness that can lead to significant physical impairment, leaving patients immobile and requiring extensive care.

Following modest physical, orthostatic, and cognitive exertion, the malaise and its associated symptoms deteriorate markedly, known as post-exertional malaise (PEM).

Since this disorder was first documented in 1934 by Melvin Ramsay, a British Physician, numerous researchers have struggled to explore its biological etiologies, but the exact cause remains unknown.

The research shows that women are affected approximately 1.5 to 2 times more than men.

In worldwide statistics, approximately 1% of the population, 17 to 24 million people, suffer from this condition.

Dr. Shreya Vohra, MBBS, says "Chronic Fatigue Syndrome predominantly affects women in their 30s to 50s, but can impact anyone, including adolescents, often following viral infections, chronic stress, or trauma. These triggers highlight the complex interplay between immune, neurological, and psychological systems, making vulnerable individuals more susceptible to its debilitating effects."

However, accurate estimation of prevalence has been challenging due to the lack of objective diagnostic tests or tools.

Symptoms

Symptoms include extreme fatigue, cognitive impairments, and self-reported difficulties with attention and memory (commonly referred to as brain fog). Other symptoms include post-exertional malaise (even after minimal physical or mental exertion), muscle and joint pain, sleep disturbances, hypersensitivity to stimuli, flu-like symptoms, autonomic dysfunction (weakness and tremors), and immune system dysfunction. Some individuals may also experience depression, and in a few cases, suicidal thoughts.

Those affected may become bedridden or housebound. Their care may include hospitalizations for acute episodes, home support for daily activities, and outpatient management involving medications, physical therapy, and mental health services.

Diagnostic Criteria

In 2015, the Institute of Medicine published diagnostic criteria for ME/CFS in both adults and children. According to these criteria, a diagnosis requires three primary symptoms and at least one of two additional symptoms.

Required Symptoms:

• A substantial reduction or impairment in the ability to engage in pre-illness levels of activity

• Post-exertional malaise (PEM)

• Unrefreshing sleep

Additional Symptoms:

• Cognitive impairment—problems with thinking, memory, executive function, and information processing.

• Orthostatic intolerance - a worsening of symptoms upon assuming and maintaining upright posture.

Dr. Sai Vinthiyaa Gopinath, MBBS, emphasizes that diagnosis relies on current criteria, and management is entirely dependent on the etiology. Symptomatic relief is provided until all other differential diagnoses are ruled out.

Management

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a debilitating illness that lacks a universally accepted case definition, cause, diagnosis, or treatment.

In addition, non-pharmacological therapies, such as cognitive behavior therapy (CBT) and graded exercise therapy (GET), and pharmacological trials, including immune modulator treatment, showed a lack of definitive efficacy for cure.

Currently, there are no universal or specific FDA‐approved drugs for CFS/ME treatment, although some medications are used off‐label for the illness. The therapy options available for CFS/ME focus on symptom relief. Treatment of CFS/ME is variable and uncertain, and the condition is primarily managed rather than cured.

Even when treated, the prognosis of CFS/ME is often poor.

MedBound Times reached out to Khushboo Agarwal, an EMDR therapist with a double Master's, MSc Developmental Psychology from Lancaster University and MA Clinical Psychology from Vishwakarma University. She says:

"Fatigue serves as a symptom, not a diagnosis. Ignoring it can lead to chronic stress, impacting mood, memory, attention, and even mental health disorders, as well as physical health problems."

To manage fatigue effectively, consider the P.A.C.E. approach:

• Physical care: Prioritize sleep hygiene, mindful eating, and regular physical activity.

• Achievement: Celebrate small successes to boost your motivation.

• Connection: Nurture relationships to provide emotional support.

• Enjoyment: Revisit hobbies that bring you joy and relaxation.

As we mark International ME/CFS Awareness Day, it's important to move beyond the stigma of ‘just being tired’ and recognize the debilitating reality of this illness. Greater awareness, research funding, and empathy can pave the way for better care and understanding.

References:

1. Graves, B. Sue, Mitsu Patel, Hailey Newgent, Gauri Parvathy, Ahmad Nasri, Jillene Moxam, Gurnoor S. Gill, Vivek Sawhney, and Manish Gupta. "Chronic Fatigue Syndrome: Diagnosis, Treatment, and Future Direction." Cureus 16, no. 10 (2024): e70616. https://doi.org/10.7759/cureus.70616.

2. Lim, Eun-Jin, Yo-Chan Ahn, Eun-Su Jang, Si-Woo Lee, Su-Hwa Lee, and Chang-Gue Son. "Systematic Review and Meta-Analysis of the Prevalence of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)." Journal of Translational Medicine 18, no. 1 (2020): 100. https://doi.org/10.1186/s12967-020-02269-0.

3. Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: National Academies Press, 2015. https://doi.org/10.17226/19012.

4. Castro-Marrero, Jesus, Naia Sáez-Francàs, Dafna Santillo, and Jose Alegre. "Treatment and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: All Roads Lead to Rome." British Journal of Pharmacology 174, no. 5 (2017): 345–369. https://doi.org/10.1111/bph.13702.

By Dr. Theresa Lily Thomas, BDS

_MSM/DP