What Is Long COVID Really Like?

What Is Long COVID Really Like?
Marina Zhang
Life has been on a steady downward slope for Hannah Camp Johnson, an intelligent, once-healthy 26-year-old woman from Alabama.
In August 2020, she contracted COVID-19. She experienced severe symptoms, including coughing, fever, and crippling fatigue; her oxygen levels fell, and she needed to take breathing medicine. She lost her ability to walk due to muscle loss in her legs.
Johnson experienced a brief recovery after two weeks of staying at home. She felt that she was getting better; her mobility improved, and she learned to walk again.
“I was walking fine. I was even doing swimming days where I would go down to the pool [at] my apartment and work out my legs with that. I would [also] go to a bookstore,” said Johnson, who has had a lifelong love of reading.
These improvements lasted for two months, then she started to fall sick again, and this time, she has yet to get better.
From 2020 to 2021, Johnson’s fatigue and cognitive problems worsened.
She could not walk without feeling winded and experienced palpitations and a rapid rise in heart rate every time she stood up.
Johnson previously had only hypothyroidism, which was under control, but six months after contracting COVID, her teeth started to deteriorate, and she was diagnosed with type 2 diabetes.
Her vision also began to decline rapidly, and she was prescribed her first pair of glasses in June 2021.
At around the same time she started experiencing an immense head pressure as if someone was gripping her brain. 

Only three months after, Johnson was given an explanation for the gripping sensation.

She was diagnosed with having focal seizures and encephalitis (a form of neuroinflammation) on an electroencephalogram. Her seizures, which have gradually manifested to the surface have been a major contributor to her disability, Johnson told The Epoch Times.

Some people suffering from vaccine injuries have also experienced similar symptoms, but Johnson developed long COVID before vaccinations were available. By the time she was vaccinated in November 2021, she had already developed all of the above symptoms; the vaccine did not significantly improve her symptoms.
Johnson’s severe case of long COVID is not isolated.

The Main Cause of Long COVID Might Be Inflammation

Clinicians have yet to settle on the cause of long COVID. The disease is complicated and systemic; patients often present with a cluster of symptoms.
Specialists are familiar with and trained in different fields, bringing varied perspectives to the discussion about long COVID.
At the molecular level, studies point to remnant viral spike protein (1, 2) contributing to long COVID. The spike protein sits on the surface of COVID-19 viruses and binds to cell receptors such as angiotensin-converting enzyme 2 (ACE2) to help the virus infect the cell.
Though the virus can persist in the body— a study led by Dr. Sabine Hazan, gastroenterologist and CEO of Progenabiome, found the whole genetic sequence of the virus present in the stools up to a month after infection—the spike protein seems to persist for even longer.
A study led by pathologist Dr. Bruce Patterson, founder and CEO of the molecular diagnostic company Incelldx, found spike protein in the immune cells of long COVID patients 15 months after infection.
The spike protein contributes to various pathologies, such as inflammation (1, 2, 3).
Patterson and internal medicine physician Dr. Jessica Peatross hypothesize that a significant driver behind long COVID is inflammation of the inner lining of the blood vessels, also known as endotheliitis.
Spike proteins have been shown to cause damage to endothelial cells. Endothelial cells form the inner lining of all blood vessels; damage to these cells elevates the risk of systemic disease. Endothelial damage is believed to be the primary driver of severe COVID.
Patterson's study also found the spike proteins were located in monocyte cells that patrol blood vessels as part of their function. When inflamed, monocytes can adhere to blood vessel walls and cause systemic blood vessel inflammation and damage (1, 2).
Spike protein could also be a reason behind the neurocognitive and neuropsychiatric symptoms in long COVID patients.
While the SARS-CoV-2 virus is too big to cross the blood-brain barrier that protects the brain from toxins in the blood, spike protein is small enough to cross. A study showed that the spike protein could cross the barrier in mice's brains. A laboratory study tested spike protein using human cells on an artificially made blood-brain barrier. Researchers found that the protein could disrupt the barrier, perhaps compromising its ability to block out toxins.
With long COVID, other changes are occurring in the body.
Hazan said that she would find COVID-19 RNA in the stools of long COVID patients who tested at her laboratory. The microflora of these patients were also in a state of imbalance, also known as dysbiosis.
Gut dysbiosis can cause a leaky gut: the gut barrier becomes compromised, and the gut bacteria can cross the barrier into the body and its fluids. Though the gut can tolerate hosting billions of foreign organisms, other areas of the body recognize them as foreign invaders.
This causes immune cells to mount an attack against these bacteria, leading to inflammation.
“The virus itself is not an autoimmune disease, but triggers autoimmune inflammation," said psychiatrist Dr. Adonis Sfera, "in which the body attacks itself."

Current Ways to Diagnose Long COVID

Without a concrete and approved diagnostic test, clinicians have yet to reach a consensus on what defines long COVID. Most have relied on the patient's physical examination and medical history to reach a diagnosis.
However, Patterson, by conducting blood tests on 250 patients with acute or long COVID, identified 14 markers that are commonly elevated in patients reporting long COVID symptoms.
Patterson's company, Incelldx, sells a COVID testing kit that evaluates and analyzes the 14 cytokine levels to diagnose patients with long COVID.
This analysis is essential in differentiating long COVID from other diseases with similar symptoms. Patterson's studies found that some people diagnosed with long COVID may actually be suffering from an acute COVID infection, post-vaccine injuries, re-activated fibromyalgia, or Lyme disease. Patterson's studies uncovered different patterns in the elevation of the 14 cytokines related to the various conditions (1, 2).
Patterson’s research and subsequent studies have shown that the five most relevant cytokines for assessing long COVID differ from those associated with Lyme disease. 
In diagnosing long COVID, distinguishing from other diseases would allow clinicians to give the most targeted treatment. "It's absolutely critical in terms of treatment. Lyme patients, maybe they need additional antibiotics; for ME-CFS (myalgic encephalomyelitis-chronic fatigue syndrome), maybe they need Valtrex or anti-herpes medication in addition to the immune modulators that we use—it is absolutely critical," Patterson said.
When cytokine in the blood rises too quickly, a cytokine storm is triggered, associated with an increased risk of severe disease outcomes and death. 
Cytokines are specialized for different functions in the body and are a signal of immune and inflammatory activity. 
Therefore, physicians like Dr. Jeffrey Nordella, who follows Patterson’s cytokine panel, reason that a person’s symptoms can all be related to cytokine levels.
Other clinicians have argued that while the panel is helpful, it may not give the full perspective in a diagnosis.
Peatross, who has given up her medical license due to limitations placed on her license for approving vaccine exemptions, told The Epoch Times that talking to a patient is her primary strategy, and blood tests that look at cytokine levels and iron augment the overall diagnosis.
Since cytokines are a sign of an immune response, individuals with a compromised immune system through drug suppression or poor health may not exhibit such high levels of the cytokines, said Peatross.
Therefore, clinicians focus on the patient’s symptoms and watch for symptom clusters typically associated with long COVID.

How Long Haulers Are Describing Their Symptoms

The Centers for Disease Control and Prevention (CDC) has listed 19 symptoms commonly reported with long COVID. However, in a 2020 study that surveyed over 3,700 long COVID patients, participants reported more than 200 different symptoms related to long COVID. 
Common symptoms include fatigue, brain fog, shortness of breath, and rapid heart rate.
“When you get people talking about brain fog, then you think of long COVID,” said critical care specialist Dr. Paul Marik.
Yet Mary Lee, who has been suffering from long COVID since Dec. 2021, said that words such as “fatigue” and “brain fog” do not adequately describe her physical tribulations.


One of the most common and debilitating symptoms of long COVID is fatigue.
A 2021 study led by Patterson demonstrated that over 30 percent of the long COVID patients going through his program reported fatigue as a significant symptom. Another study has shown that 80 percent of people with long COVID report fatigue.
Johnson described chronic fatigue as “living with limited numbers of batteries” and long COVID patients needing to plan their days accordingly.
“Throughout the day, I run out of units of energy, and I only have so many units of energy to give. Before I know it, I'm completely unable to function,” she said.
Tiffany Braccia, aged 59, has lived with COVID symptoms since April 2020. She needs to rest before partaking in any activity and must make sure that she doesn’t spend all of her energy on one thing.
If long COVID patients overspend their energy, they could be exhausted for days.
Justin Wilhites, aged 42, developed COVID symptoms in 2020 and has never recovered. He told The Epoch Times that there were good days and bad days, and he could tell which type of day he would experience the minute he woke up. For many long COVID patients, the bad days mean very little activity except hoping that the next day will be better.
Sometimes fatigue can worsen; Johnson and Wilhites each said they had seen a clear decline in their energy over the two years.
Wilhites described the decline as gradual steps down.
For a while, symptoms such as fatigue would appear to stabilize and form the new normal. Then he would experience a deterioration that would stabilize before falling again.
“It's like steps down,” said Wilhites, “goes normal, and then it goes down.”
 Mitochondria, a membrane-enclosed cellular organelles, which produce energy, 3D illustration. (Kateryna Kon/Shutterstock)
Mitochondria, a membrane-enclosed cellular organelles, which produce energy, 3D illustration. (Kateryna Kon/Shutterstock)

Cognitive Problems

Besides fatigue, another concerning and hugely debilitating symptom is cognitive decline, colloquially described as brain fog.
A UK study found that around 70 percent of COVID patients report problems with concentration and memory after contracting COVID.
Brain fog is described as confusion, lack of mental clarity, and forgetfulness; in long COVID patients, the symptoms are typically problems with memory and concentration.
Brain fog not only impacts long haulers’ professional ability but also can affect day-to-day skills such as being able to drive, dressing, and maintaining basic hygiene.
Braccia said that several weeks after her COVID infection in March, she suddenly lost her grooming abilities; she did not know how to shower or use shampoo. That period was particularly dark and despairing.
She has since developed coping mechanisms to remember instructions, but for some time, she could not remember even two-step instructions.
The inability to concentrate due to brain fog can affect hobbies such as reading and watching movies.
Johnson has given up reading after a progressive decline in concentration and memory.
After reading, she would need to go online to search for summaries and analyses of the works “because I would have already forgotten what I've already read,” said Johnson, “I had a whole bookshelf full of my books, and I just can't even pick them up anymore.”
Despite being only in her mid-20s, Johnson has been documented as appearing with dementia symptoms; words like “amnesia” have been recorded in her medical histories.
Memory loss depletes long haulers’ vocabulary. Johnson, who used to pride herself on her eloquence, began to notice that she would sometimes need help finishing her sentences.
Braccia said that in stressful situations, words would escape her.
Stuttering or slurring may also creep into sentences, said Wilhites. Depending on the person, socializing could go from stressful to infuriating.
Another consequence of brain fog is difficulty keeping up with conversations or understanding nuances.
Braccia said that she would easily become so fixated on what she would say that she missed social cues, only to notice them a few moments later.
“I’m always three seconds behind everyone else,” she said.

Muscle Weakness and Pain

Around 20 percent of long COVID patients report muscle pain, which often appears as an early symptom. Weakness, as an association with fatigue, has been reported in 60 percent of long COVID patients.
“My muscles are like jelly,” said Wilhites, describing his constant state of weakness.
Since April 2020, Wilhites has been in constant pain across the muscles in his back and neck and can barely walk due to the pain.
“It would hurt me to hug you; my back muscles, my shoulder muscles, my biceps, my triceps, anything that's involved in a hug hurts me,” said Wilhites, “And that's still to this day.”
Braccia experienced a sudden weight gain a few months after contracting COVID. Though she lost the weight a few months later, she was left with persistent weakness in her joints and legs.
Muscle pain and shooting neuropathic pain have also been persistent for her, confining her to inactivity.
 Arm weakness (Orawan Pattarawimonchai/Shutterstock)
Arm weakness (Orawan Pattarawimonchai/Shutterstock)

Shortness of Breath and Tachycardia

Shortness of breath can be due to pulmonary causes and cardiac problems, including tachycardia, a rapid heart rate of over 100 beats per minute (bpm).
Research has revealed that 26 to 51 percent of COVID patients have experienced persistent shortness of breath, also known as dyspnea. A 2021 study found that 25 to 50 percent of long COVID patients reported “persistent tachycardia or palpitations.”
Symptoms such as brain fog, fatigue, muscle weakness and pain, and tachycardia are also seen in other conditions, including Lyme disease and chronic fatigue, but shortness of breath is one of the hallmarks of COVID-related chronic diseases.
Shortness of breath is attributed to fatigue and post-exertional malaise and can be episodic or constant.
For Wilhites, just walking up and down the stairs would be enough to leave his breathing shallow and make him feel as if he was about to faint.
Tachycardia can often cause shortness of breath as once the heart beats too fast, there may not be enough oxygen being released into the body.
Several studies have documented a phenomenon of post-COVID postural orthostatic tachycardia syndrome, defined as a sudden drop in blood pressure or a sudden rise in heart rate within three minutes of standing up (1, 2, 3).
Johnson has noticed this herself.
“I've tested it and even showed my primary care. My heart [when] I'm sitting down can be like 80 [bpm], and then I stand up, and it just jumps to at least like 125,” she said.

Johnson told The Epoch Times on Dec. 17, 2022, that her heart rate can now easily reach 210 beats per minute when she stands up.

 Prolonged shortness of breath (Wavebreakmedia/Shutterstock)
Prolonged shortness of breath (Wavebreakmedia/Shutterstock)

Mental Health

Perhaps one of the least discussed effects of long COVID is its detrimental impact on people’s mental health. The severity of its impact appears to be particularly significant in patients suffering from long COVID for an extended period.
Johnson was diagnosed with post-traumatic stress disorder (PTSD) from a previous event, but since Feb. 2021, she has been battling PTSD from COVID-19 and its complications.
Lee described that it is similar to having your life robbed away.
Many long haulers were previously healthy and strong. Passing every day by lying in bed and being unable to enjoy many of their interests can be difficult to accept without receding into despair.
Suicidality is a great risk for long COVID patients, as pointed out in a 2021 paper by Leo Sher that discussed prevalent mental health problems in long haulers.
Sher wrote that mental health problems such as PTSD, anxiety, and psychosis may be caused by damage to the brain from the infection or can result from the experience of the disease.
The decline in quality of life and losing hope of recovery appear to be major factors behind the mental health crisis.
Johnson has noticed a definite decline in her health, her fatigue has gotten worse, and it seems to her that she is developing a new symptom every few months.
Wilhites’s wife said that many doctors focus on treating his symptoms rather than addressing the cause of his illness. Medication relieves his symptoms but is only a temporary fix.
His body soon gets used to the drugs, and the symptoms resurface; at the same time, a new symptom appears and is suppressed temporarily with medication.
Wilhite’s health and quality of life are on a gradual but certain decline.
Braccia related that it is like living to pass the day.
“It's a very sad existence,” she said, “I wouldn't recommend it for anybody.”
Both Johnson and Braccia have started counseling and developed support systems.
Lee, a person of faith, told The Epoch Times that this physical tribulation has allowed her to re-evaluate what really matters to her in life, and some things she once held onto no longer mattered as much.
Believing that nothing happens in life without a reason, Lee said that she has been journaling every day about what she is grateful for, and it has given her a new perspective on her life and her relationships with people.
She said her spiritual journey was probably the most important part of the past year of living with long COVID.
Marina Zhang is a health writer for The Epoch Times, based in New York. She mainly covers stories on COVID-19 and the healthcare system and has a bachelors in biomedicine from The University of Melbourne. Contact her at [email protected].