What is ME/CFS? How do I know if I have ME/CFS?

What is ME/CFS?

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ME/CFS, also known as myalgic encephalomyelitis/chronic fatigue syndrome, is a chronic and serious neurological disorder that impacts various body systems. This debilitating condition manifests through a range of symptoms, including persistent fatigue, post-exertional malaise, and cognitive impairment. Although the exact cause of ME/CFS remains unknown, it is often triggered by previous infections, such as Epstein-Barr Virus, SARS, SARS-CoV-2, and enterovirus, as well as fungal and bacterial infections. Notably, the National Institutes of Health (NIH) reports that approximately 1 in 10 individuals who experience certain infections ultimately develop ME/CFS. Additionally, extreme physical stress, emotional challenges, and immune system changes can act as potential triggers for this condition.

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What are the symptoms of ME/CFS?

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ME/CFS Symptoms include post-exertional malaise, extreme fatigue, cognitive impairment, disrupted sleep patterns, dizziness, and lightheadedness. Orthostatic Intolerance can cause abnormal responses to being upright, leading to symptoms like fainting and elevated heart rate. Other manifestations may include tender lymph nodes, new-onset headaches, muscle and joint pain, sensitivities to light, sounds, or chemicals, difficulty regulating body temperature, excessive thirst, frequent urination, and gastrointestinal issues.

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How common is ME/CFS?

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Affecting over 20 million people globally, including 1-2.5 million Americans, ME/CFS is a disabling illness that renders up to 70% of patients unable to work, with 25% of patients confined to their homes or beds. Unfortunately, fewer than 5% of adults with ME/CFS fully regain their pre-illness level of functioning in their lifetime, although some may experience gradual improvements over time.

While ME/CFS can affect anyone, it is more prevalent in women, with the highest incidence occurring in individuals aged 10-19 and 30-39. The majority of individuals currently living with ME/CFS are between 40-60 years old. Although Caucasians are most commonly diagnosed with ME/CFS, this discrepancy is believed to be due to differences in healthcare access and knowledge rather than variations in the disease's prevalence among different races or ethnicities.

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What causes ME/CFS?

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The underlying causes of ME/CFS are not yet fully understood, despite the established connection between infections, stressors, and the development of the condition. Researchers and physicians continue to investigate this neurological disease and its effects on various bodily systems. The complex interactions between chemicals and cell types further complicate the identification of specific system dysfunctions underlying ME/CFS.

ME/CFS could be linked to a range of different causes including:
Immune System: Studies consistently indicate impaired function of natural killer (NK) cells and abnormal levels of cytokines. Additionally, the immune system may exhibit altered responses to specific infections, such as Epstein-Barr virus (EBV), as well as autoimmune markers and elevated mast cell activation markers.

Nervous System: ME/CFS is associated with reduced blood flow to the brain when upright and autonomic dysfunction in over 30% of patients. Furthermore, some individuals may experience small fiber neuropathy, while brain imaging studies have shown potential abnormalities in white and gray matter, possibly related to neuroinflammation.

Cardiovascular/Circulatory System: Cardiovascular manifestations in ME/CFS may stem from dysregulation in the nervous or immune systems. Invasive cardiopulmonary exercise testing has revealed poor blood return to the heart and reduced oxygen extraction during exercise, coupled with overall low blood volume.

Endocrine System: Dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis, with blunted ACTH and cortisol responses, as well as lower levels of T3 thyroid hormone and growth hormone (GH), has been observed in ME/CFS studies.

Metabolic and Mitochondrial Dysfunction: Research suggests that ME/CFS cells primarily rely on amino acids as an energy source, while their ability to utilize more efficient sources like glucose, fatty acids, and ketones may be diminished. Some investigations have also shown higher levels of oxidative stress markers.

Infectious Disease: ME/CFS can involve various infectious factors, including reactivation of latent herpes viruses like EBV, persistent viral presence in specific tissues (e.g., coxsackieviruses in the GI tract or heart), chronic low-level undiagnosed infections (e.g., Lyme disease, Bartonella), and translocation of gut bacteria into the bloodstream, leading to increased levels of inflammatory markers.

Musculoskeletal & Connective Tissue: Studies have highlighted a higher prevalence of tethered cord syndrome, spinal instabilities, Chiari malformation, and connective tissue disorders in individuals with ME/CFS.

Understanding the causes of ME/CFS requires comprehensive analysis and further research to elucidate the complex mechanisms involved.

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How is ME/CFS diagnosed?

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While no single diagnostic biomarker exists for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and medical awareness of the condition is limited, obtaining a diagnosis can be challenging. Typically, physicians rule out other potential underlying conditions before considering ME/CFS. To receive a diagnosis of ME/CFS, patients must meet the following criteria for at least 6 months:

ME/CFS Symptoms that must be present:

• Post-exertional malaise (unusual symptoms after physical or cognitive effort)
• Unrefreshing sleep
• Substantial reduction in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, accompanied by fatigue that is not relieved by rest.

Additionally, one of the following must also be present:

• Cognitive impairment
• Orthostatic intolerance

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