The author recounts their struggle with persistent symptoms after COVID, initially mistaken for anxiety, later diagnosed as Postural Orthostatic Tachycardia Syndrome (POTS) and mast cell activation syndrome (MCAS). They detail managing autonomic dysfunction through lifestyle adjustments and support, emphasizing the emotional impact on family and the ongoing nature of recovery.
Tag: ME/CFS
POTS and Orthostatic Intolerance: What You Need to Know
Postural orthostatic tachycardia syndrome (POTS) is a real, disabling condition affecting the body's autonomic nervous system, blood volume, and immune response. Patients experience symptoms like dizziness, rapid heartbeat, and fatigue upon standing. Multiple overlapping mechanisms contribute to POTS, and proper diagnosis and management can significantly improve patient outcomes. Understanding and recognition are crucial.
Understanding Sensory Overload in Chronic Illness
The letter describes the struggles of someone with severe illness, detailing how sensory overload from light and sound can overwhelm them, leading to neurological distress. The writer explains their need for a low-stimulus environment to aid recovery, emphasizing that quietness and understanding from others greatly support their healing process.
The Economic Costs of Ignoring Covid in Britain
Britain faces an economic crisis due to Long Covid, with over two million affected individuals suffering debilitating symptoms. The rise in economic inactivity, currently at 2.8 million, highlights the failure of public health policies. Addressing this requires recognizing Long Covid under disability laws and implementing structural changes to support affected workers.
The Art of Pacing in Long COVID: How to Protect Your Energy and Avoid Crashes
ILiving with Long Covid, ME CFS, or other chronic illnesses often feels like walking a tightrope. Every activity from household chores to a short walk requires careful thought, attention, and restraint. That is where pacing comes in a deliberate evidence based strategy for managing energy preventing post exertional malaise and maintaining quality of life. Pacing … Continue reading The Art of Pacing in Long COVID: How to Protect Your Energy and Avoid Crashes
Giving Voice to Chronic Illnesses
The article explores the challenges faced by individuals with severe chronic illnesses, particularly those who are housebound or bedbound. It highlights the importance of digital communities that provide connection and support for these often-invisible individuals. The author emphasizes the responsibility of sharing their stories and understanding their experiences, acknowledging their silence and resilience.
Decoding ME/CFS: Key Genetic Findings Explained
Recent genetic research has confirmed that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a biological condition, not merely psychological. The DecodeME study identified eight genetic signals linked to the immune and nervous systems, validating patient experiences. Understanding this can aid healthcare discussions, allowing for better management and support for those affected.
Chronic Illness in Pop Culture: TV and Film Moments That Highlight ME/CFS and Long COVID
Media significantly influences societal perceptions of chronic illnesses like ME/CFS and Long COVID, often misunderstood and underrepresented. Key portrayals in shows like "The Golden Girls" and documentaries like "Unrest" raise awareness yet reveal gaps in representation. More nuanced narratives are crucial for fostering understanding and reducing stigma surrounding these complex conditions.
Post-Exertional Malaise (PEM) and What Can Be Done
Post-exertional malaise (PEM) is a severe symptom of myalgic encephalomyelitis/chronic fatigue syndrome and long COVID, causing worsened symptoms after exertion. It involves impaired energy production, neuroinflammation, autonomic nervous system dysfunction, and muscle issues. Management strategies include pacing, heart rate monitoring, targeted medications, and lifestyle adjustments to alleviate symptoms.
Long Covid Journey 