What is Long Covid?

Let’s get some facts straight. This won’t be easy to read, but it’s important.

Sometimes Long Covid is Forever Covid. Unfortunately, some people won’t recover. We need medical intervention—urgently.

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The WHO describes Long Covid as the continuation or development of new symptoms three months after an initial SARS-CoV-2 infection, with these symptoms lasting for at least two months with no other explanation. But this definition doesn’t fully convey the scope of the disease—a person’s experience of Long Covid can range from very mild to one of the worst things that can happen to a human. Symptoms and presentation vary among individuals and often fluctuate day to day or even hour to hour.

Research shows that 10–20% of SARS-CoV-2 infections lead to Long Covid. Some of the more common symptoms are chronic pain, brain fog, shortness of breath, chest pain, and chronic intense fatigue, but more than 200 symptoms impacting multiple organ systems have been identified. At least 75 million individuals worldwide are estimated to have Long Covid, and cases continue to increase as the pandemic goes on.

Most people with Long Covid, regardless of severity, developed it after a mild case of COVID-19; some Long Haulers even had asymptomatic acute infections. Every single time someone is infected with SARS-CoV-2, they risk developing Long Covid.

FYI, SARS-CoV-2 is the virus that causes Covid-19 disease. The virus’s closest relative is SARS-CoV-1.

This study found that a group of SARS survivors were still sick—18 years after infection.

Chronic Fatigue

Fever

PEM

Shortness of breath

Chest Pain

Headaches

Dizziness

Neuropathy

Myocarditis

Pericarditis

Difficulty Concentrating

Memory Loss

Confusion/Disorientation

DP/DR

Tinnitus

Visual Snow

Paresthesia

Insomnia

Hypersomnia

Nausea

Diarrhea

Abdominal Pain

Acid Reflux

Hypoglycemia

Heart Palpitations

High Blood Pressure

Tachycardia

Joint Pain

Muscle Weakness

Muscle Pain

Head Pressure

Eye Pressure

Ear Pressure

Rashes

Hair Loss

Dry Skin

Acne

Loss of taste

Loss of smell

Weight changes

Diabetes Type 1

Diabetes Type 2

Allergies

Autoimmune conditions

Hormonal Imbalances

Persistent Sore Throat

Tooth Decay

Sinus Congestion

Persistent Cough

Orthostatic Intolerance

Migraines

Chronic Fatigue Fever PEM Shortness of breath Chest Pain Headaches Dizziness Neuropathy Myocarditis Pericarditis Difficulty Concentrating Memory Loss Confusion/Disorientation DP/DR Tinnitus Visual Snow Paresthesia Insomnia Hypersomnia Nausea Diarrhea Abdominal Pain Acid Reflux Hypoglycemia Heart Palpitations High Blood Pressure Tachycardia Joint Pain Muscle Weakness Muscle Pain Head Pressure Eye Pressure Ear Pressure Rashes Hair Loss Dry Skin Acne Loss of taste Loss of smell Weight changes Diabetes Type 1 Diabetes Type 2 Allergies Autoimmune conditions Hormonal Imbalances Persistent Sore Throat Tooth Decay Sinus Congestion Persistent Cough Orthostatic Intolerance Migraines

Anyone is susceptible to Long Covid, and it can present in vastly different ways.

Amy, a young woman, is in bed with clothing covering her eyes, due to extreme light sensitivity.
A Berlin Buyers Club member using a strange water bath contraption for one's extremities at a health clinic. This treatment does not help.
A young woman in her 20s, has messy hair, after not being able to wash it, due to chronic illness, for a long time.
A young woman is laying down making eye contact with the camera lens with sadness in her eyes because she is so fatigued.
A young woman in her 20s is lying in bed, with sunglasses on due to light sensitivity.
A young person is sitting in a wheelchair outside while wearing a mask.
A group of chronically ill friends meeting up at the park. They are sitting on blankets and socializing.
A young woman is wearing a mask outside while holding two protest signs which advocate for covid protections and long covid treatments.
A young woman is wearing bright, colorful clothing while wearing a coordinating mask. She looks like she's about to go out and socialize.
A man is laying down in his bed next to his dog in exhaustion.
A middle-aged woman is wearing a mask outside of a healthcare facility for cardiovascular issues.

Some of us are completely bedridden, while others get a few hours a week to feel semi-normal.

Some of us are fully housebound, unable to do much other than look after ourselves. Some of us are able to attend appointments and occasionally see friends. Some of us are able to work, but lack the energy to do hobbies or chores or to socialize. Some of us are living almost normally but are silently suffering with chronic symptoms, always with the risk that a reinfection could lead to an irreversible deterioration of our health. Currently, there are no approved treatments for Long Covid.

Like most diseases, Long Covid has a scale of severity.

What causes Long Covid?

The science isn’t conclusive yet. These are some of the proposed theories:

  • After a person contracts SARS-Cov-2, hidden persistent virus or its remnants (“viral reservoirs”) cause chronic inflammation, tissue damage, and ongoing symptoms.

  • Infection with SARS-CoV-2 spurs T- and B-cells to produce new autoantibodies, or immune proteins that mistakenly target a person’s own tissues. The initial autoimmune trigger often occurs in the body perpetually, making it difficult to locate and shut down.

  • Latent (dormant) viruses, particularly herpesviruses, are reactivated following infection with SARS-CoV-2, causing a variety of symptoms.

  • Infection with SARS-CoV-2 is known to cause microscopic tissue damage in hard-to-reach areas, such as the brain, lungs, and endothelium (tissue that lines the blood vessels). These changes can lead to persistent inflammation in one or more tissues, which can then trigger damage in other tissues.

Berlin Buyers Club sticker with a masked Bratz doll that says "I don't want another sick girl summer. CURE LONG COVID"

WE NEED HELP 💕

WE NEED HELP 💕

Sources

Thank you to everyone for allowing us to share their images.