What is ME/CFS: an in-depth look at Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Imagine waking up every day feeling exhausted, no matter how many hours of sleep you've gotten. The fatigue is overwhelming, and your whole body aches as if you’ve run a marathon. Simple tasks, like taking a shower or making breakfast, feel like climbing a mountain. Despite numerous visits to various doctors and undergoing countless tests, you still don't have answers. Then, one day, a specialist finally diagnoses you with ME/CFS. You feel a mixture of relief and confusion. But what exactly does that mean?
What is ME/CFS?
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex and debilitating disorder marked by extreme fatigue that does not improve with rest and worsens with physical or mental exertion.
This condition significantly affects daily life and is accompanied by a range of other symptoms, including cognitive impairment, often described as "brain fog"; sleep disturbances, and widespread pain, manifesting as muscle pain, joint pain, and headaches. Many individuals also experience orthostatic intolerance, leading to dizziness or lightheadedness when standing or sitting upright. Another notable characteristic of ME/CFS is post-exertional malaise (PEM), where symptoms significantly worsen following physical or mental activity and can last for more than 24 hours.
The Journey to Diagnosis
The path to an ME/CFS diagnosis can be long and frustrating. Patients often undergo extensive medical evaluations to rule out other conditions since ME/CFS lacks a specific diagnostic test. The diagnosis is typically made based on a patient's medical history and symptoms, often taking years of persistent, unexplained fatigue and other debilitating symptoms before reaching a conclusion.
Why is ME/CFS Controversial?
The controversy surrounding ME/CFS stems from several factors:
Lack of Biomarkers: There are no recognised and validated biomarkers or diagnostic tests. Instead, there is an over-reliance on patient history for diagnosis, which is based on criteria with limited sensitivity and specificity.
Historical Misunderstanding: Early cases of ME/CFS were often dismissed as psychosomatic or "all in the head," leading to stigma and misunderstanding.
Inconsistent Research: Research findings on ME/CFS have been inconsistent, partly due to varying definitions and diagnostic criteria used in studies.
ME vs. CFS: What's the Difference?
The terms Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are often used interchangeably, but they have different origins and connotations:
Myalgic Encephalomyelitis (ME): This term was first used in an anonymous editorial in an issue of Lancet in 1955, describing a case study of an outbreak at London’s Royal Free Hospital, where more than 200 hospital members became disabled. The ME was derived from the predominant symptoms of muscle pain (myalgia) and effects on the brain (encephalo), spinal cord (myel), and inflammation (itis). “ME” was widely accepted until the late 1980s when the Centres for Disease Control (CDC) introduced the term “Chronic Fatigue Syndrome” in response to a series of similar outbreaks in the United States.
Chronic Fatigue Syndrome (CFS): Coined in 1988 by the CDC, to emphasises the symptoms of chronic fatigue, which many patients and advocates feel minimises the severity and complexity of the disease.
The use of these terms reflects different perspectives on the illness, with "ME" highlighting the neurological and inflammatory aspects, while "CFS" focuses on the pervasive fatigue. Both terms are often used interchangeably, though there is a growing preference for "ME/CFS" to acknowledge the condition's complexity and the range of symptoms involved.
What causes ME/CFS?
The exact cause of ME/CFS remains unknown, adding to the difficulty of diagnosis and treatment. However, several factors are believed to contribute to the onset and progression of the disease:
Infections: Certain viral infections, such as Epstein-Barr virus, human herpesvirus 6, and enteroviruses, are believed to contribute to the pathogenesis or to act as be a trigger in the development of ME/CFS.
Immune System Dysfunction: abnormalities in the immune system, including chronic inflammation and autoimmunity, have been observed in ME/CFS patients.
Mitochondrial Disruptions: Several abnormalities in mitochondria, the powerhouse of the cells, such as altered adenosine triphosphate (ATP) production and increased reactive oxygen species (ROS), have been observed in ME/CFS patients.
Hormonal Imbalances: Dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis, which controls stress response, may play a role in ME/CFS.
Genetic Predisposition: Genetic factors may increase susceptibility to ME/CFS
Environmental Factors: Exposure to environmental toxins and stressors may trigger or exacerbate symptoms.
The Difficulty of Living with ME/CFS
Living with ME/CFS is incredibly challenging. The severe and persistent fatigue, cognitive difficulties, and chronic pain can significantly impair daily functioning and quality of life. Many struggle to maintain employment, relationships, and social activities due to the debilitating nature of the condition.
The lack of clear diagnostic criteria and effective treatments often leaves people feeling isolated and misunderstood and the stigma associated with ME/CFS can lead to mental health issues such as depression and anxiety, compounding the physical symptoms.
If you or a loved one is suffering from ME/CFS and is looking for answers, I invite you to join me for a one-on-one discovery call. Together, we can explore your unique situation, identify potential triggers, and create a tailored plan to help you manage your condition more effectively. Your journey to better health starts with a conversation. Book a discovery call today.
Disclaimer: This blog is for informational purposes only and should not be taken as medical advice. Always consult healthcare professionals before making significant dietary changes.