What is?
A guide through the lingo
Here, we define & elucidate key medical terms to help you navigate your way through the labyrinth of Long Covid. Links are included to where you can find more information. (Long form versions on their way!)
LONG COVID
Long Covid is a patient defined term, first used as a hashtag on twitter by Dr Elisa Perego. It describes a wide array of symptoms that persist after a SARS-Cov-2 infection. NICE classifies this time period as over 12 weeks, although it can be considered at 4 weeks. Multisystem, complex & biological - 96% can already be determined through immune testing. See the Patient Led Research Collaboration for more info.
ME/CFS
Myalgic Encephalomyelitis is a neurological condition diagnosed through 4 symptoms: Debilitating fatigue PEM - Post Exertional Malaise, Sleep issues and Cognitive dysfunction for over 3 months. Although many other symptoms can be present. Around 50% of those with Long Covid meet ME/CFS criteria. 80% affected are women. The ME Association has more details on their website.
​
PEM - PESE
Post-Exertional Malaise or Post Exertional Symptom Exacerbation affects 89% of people with Long Covid. It is where physical, cognitive or sensory activity leads to biological abnormalities that are harmful to the patient. It is a debilitating condition that leads to a profound lack of functional ability. It is part of the criteria for ME/CFS. You can refer to Long Covid Physio for more explanation.
​
PACING
Pacing is an energy conservation technique that enables a patient to minimise PEM. It is devising ways to stay within one's energy envelope through balancing rest & activity. One can use assistive products and environmental modifications to avoid relapse. Known as the 3Ps - Prioritisation, Planning & Pacing. It is a vital part of Long Covid symptom management. World Physiotherapy can give you more tips.
​
DYSAUTONOMIA
MCAS
Dysautonomia is a malfunctioning of the autonomic nervous system. A high proportion of Long Haulers are developing dysautonomia, especially POTS. The ANS regulates that which is not under our conscious control: like heart rate, blood pressure, digestion & temperature control. Any of these parts of the body can be affected. Please see Dysautonomia International for more information.
​
Mast Cells are resident cells of connective tissue. They are everywhere in the body & an important part of the immune system. These cells have been called the 'policemen' of the immune system. They react by producing chemical mediators, including histamine. When they release these chemicals too frequently or too often, this causes Mast Cell Activation Syndrome. It is a multisystem illness. See Mast Cell Action.
​
POTS
Postural Tachycardia Syndrome can affect up to 80% of people with Long Covid. It is where the narrowing of the blood vessels on standing do not function properly due to dysregulation of the autonomic nervous system. This can lead to a racing heart & dizziness amongst other symptoms due to the lack of blood flow to the brain. The NASA lean test can help diagnose POTS. See PoTS UK for help.
​
VIRAL PERSISTENCE
Viral Persistence is a key hypothesis of one the driving forces of Long Covid. This is where SARS-CoV-2 viral RNA & proteins are found in reservoirs throughout the body. Studies have already shown that a majority tested have viral persistence. The seminal paper was from Proal & Elzakker. It is also a theory in ME/CFS & has been researched by Chia & others. This could be a key part of the pathophysiology. See PolyBio.
​
MICROCLOTS
Microclots have been found in every Long Covid patient tested. This is key research that has been spearheaded by Prof Resia Pretorious and Prof Douglas Kell. They found that SARS-CoV-2 causes endothelial damage & dysfunction with platelet adhesion & activation. This leads to a cytokine cascade & the formation of amyloid, fibrinaloid microclots. These then damage the capillaries & stop oxygen extraction. DBK Group
​
VASCULAR DISEASE
Although SAR-CoV-2 enters the body through the respiratory system, it is predominantly a vascular disease. The cells that make up the inner lining of the blood vessels, the endothelium, are damaged from an inflammatory response. This leads to widespread vascular & micro-vascular dysfunction. The endothelial cells then trigger coagulation & platelet activation, which decreases blood flow. See Dr Rae Duncan
​
BRAIN RETRAINING
Brain Retraining programs also called 'Neuroplasticity' are expensive, controversial pseudoscience that claim they can treat Long Covid & ME/CFS. Such programs as the Lightning Process, DNRS, The Gupta Program have marketed aggressively to Long Covid patients. They use psychological & choice based techniques to condition patients they can alter their symptoms. Please avoid these programs.
​
EDS - HSD
Ehlers-Danlos Syndromes/ Hypermobility Spectrum Disorders are genetic conditions where the connective tissue & collagen in the body is not functioning normally and often stretchy & fragile. Connective tissue is everywhere in the body & supports the skin, tendons, blood vessels & internal organs. EDS is common with POTS & MCAS & is known as a Trifecta. See the EDS Society
​
PENTAD
Described by Dr Andrew Maxwell, the PENTAD is the grouping of 5 conditions that often co-occur: Dysautonomia/POTS, MCAS, Autoimmunity & EDS. Within these 5 headings, there are other symptoms that can be grouped to form a unified diagnosis. This clarifies the complex soup of conditions that those who are chronically ill experience. An excellent video by Dr Maxwell can be viewed HERE by the ILC.
​
AUTOIMMUNITY
Autoimmunity and immune dysregulation are key hypotheses for part of the mechanism of Long Covid. This is due to the antibodies created when exposed to SARS-CoV-2 which react to host proteins in molecular mimicry. Autoantibodies & radically altered immune cells have been found in those with Long Covid; this includes T-cell exhaustion & immunosuppression. Increased risk to autoimmunity is also seen.
​
PREVENTION
Taking steps to prevent SAR-CoV-2 infection is the only way to avoid Long Covid. This can be done through reducing airborne transmission. Anyone can take steps to protect themselves & their loved ones. This includes; air filtration with HEPA; ventilation; monitoring CO2 levels; masking with high-quality respirator masks such an N95 or FPP3 i.e. 3M Aura & isolating when infected. See Clean Air Crew for more tips.
​
BPS
The Biopsychosocial model has been increasingly prevalent since the 1970s. It was devised by George Engels to improve healthcare & include psychological & social factors in disease. Sounds good?! Yet unfortunately this model has been applied to poorly understood illness (MUS) & Long Covid to falsely attribute psychological & social factors - such as 'Lockdown Anxiety'. See Prof Diane O'Leary.
​
