By Maggie Bushway
Presented for the degree of Master of Arts in the Department of Journalism at The University of Mississippi
April 20th, 2022
Alexis grew up a gifted kid but suddenly couldn’t remember the alphabet. Amanda couldn’t walk up the stairs or put sentences together. Andrew’s taste and smell took a long time to return, and his vision declined in a matter of months. Courtney experienced an inflamed throat and headaches. Jen developed dysautonomia and is no longer able to walk long distances. Jessica could only tolerate laying down for months and eventually lost her job. Keith’s taste has been permanently altered. Gena P. completely lost her taste and smell. Nataly now has Chronic Fatigue Syndrome. Zach had such bad brain fog that he thought he was in a dream. Gena E. just hit the twenty-month mark of having fatigue, brain fog, and burning skin sensations. Hollywood screenwriter Heidi Ferrer committed suicide because her escalating symptoms drove her to despair.
These twelve people were healthy individuals just two years ago but since contracting COVID-19, their world turn upside down. Post-acute sequelae of COVID-19 (PASC) is the scientific name for a syndrome more commonly known as Long-COVID. Many people continue to have symptoms or complications weeks, months, or even years after contracting the virus.
We call ourselves “Long-Haulers.”
What makes me, a journalist, qualified to tackle such a huge issue as Long-COVID? During the rise of the Pandemic in late July of 2020, I came down with Covid-19, as well as my sister and friends. While they made a speedy recovery from the virus, I had the gastrointestinal symptoms every day for three months, and my lungs have never felt the same. For years I have had a dry cough from Sjogren’s Syndrome. Since coming down with COVID-19 two years ago, when I cough now, my lungs still feel tight and I struggle to catch my breath. After describing my symptoms to my Rheumatologist, he said that I have Long-COVID and that nobody knows enough about it to treat it. This is the experience of some Long-Haulers, especially early on in the pandemic. Others were told that nothing was wrong, that it was in their head, or that they were making it up for attention. Countless people are advocating for and treating themselves because nobody else will. The purpose of this project is to look at Long-COVID through both medical studies and from the lens of those experiencing it themselves.
According to a study done by PLOS medicine called “Incidence, Co-occurrence, and Evolution of Long-COVID Features,” over one in three had at least one Long-COVID symptom between three to six months after their diagnosis, which translates to roughly thirty percent of all cases. This terrifying statistic has been confirmed in numerous other studies.
The symptoms of Long-COVID can look different for everyone, in both severity and variety. But there are some consistent symptoms that are mentioned in several studies, including “Incidence, Co-Occurrence, and Evolution of Long-COVID Features.” The following symptoms were included in a list that they used to measure demographics of symptoms:
Anxiety and depression
After fighting for his life in the hospital, Zach developed disturbing neurological symptoms in the weeks following his recovery. He lost track of time, couldn’t make sense of what people were saying, and truly believed he was in a dream. Zach recalls driving down the road thinking that the only way out of the dream was to die, and considered crashing his car into a tree to wake up. Thankfully he didn’t; but thoughts like this continued for about four weeks after his recovery.
Brain fog is one of the most common Long-COVID symptoms that people struggle with, and it can vary from being a little forgetful, to dementia-like forgetfulness and confusion.
“I don’t trust my brain anymore,” said Jen. “That’s really scary.” She recalls seeing words in her head and not being able to say them. After ruling out everything else, Jen’s doctors told her it was Long-COVID.
Alexis was diagnosed with post-viral cognitive decline after testing positive for COVID-19. “Part of my identity was being sharp, being able to respond to things quickly, making insights, and all of a sudden I couldn’t remember the alphabet,” she said.
The majority of people who contract COVID-19 list brain fog as one of the acute symptoms, however, many Long-Haulers continue to experience brain fog or other neurological symptoms long after recovering from the virus.
Gena E. recalls that while sick, she didn’t watch TV because she couldn’t keep up with storylines or characters. In addition, she had to put her career on hold for 9 months because the brain fog was so severe, she could no longer write.
Using data from a hospital database, psychiatry and neurology experts led by Maxime Taquet conducted a six-month study including 236,379 survivors’ records. They included patients who had influenza or other respiratory tract infections during the same time as control groups.
“Most diagnostic categories were more common in patients who had COVID-19 than those who had influenza,” Taquet wrote.
The experts found that 33.62% of the 236,379 patients who were diagnosed with COVID-19, went on to have neurological or psychiatric symptoms in the following six months. This alarming statistic caused the researchers to consider what the effect of this will be on society. They concluded, “Services need to be configured, and resourced to deal with this anticipated need.” They bring up a good point: companies need to prepare for a number of employees dealing with this debilitating symptom.
Chest and throat
Chest/throat pain was another symptom considered in the study. Four weeks after recovering from COVID-19, Courtney experienced a sensation that she had something stuck in her throat. She went to an Ear, Nose, and Throat doctor (ENT) who thought she had post viral thyroiditis, but her thyroid panel came back fine. Next she went to a different ENT who found that her throat was inflamed but it did not get better with steroids. Twelve weeks post-COVID it suddenly went away with no explanation.
Andrew never had a cough or lung problems during the acute stage of the virus. He experienced brain fog, aches, chills, congestion, and fatigue. Many of his symptoms lingered for weeks, but eventually most of them went away. Over time he began to have chest pain, something he had no prior history of or had ever experienced while sick with COVID-19. He never found an explanation for it, and expressed that it was anxiety inducing to not know what was wrong.
“The hard thing about it, too, it was like, it felt a little bit taboo to talk about it,” Andrew said. “And I don’t know if that was just like some of the circles I was in, but people were like, no, you can’t tell me you still have COVID symptoms. They’re going to think you’re going to get them sick.”
Taste and smell
Loss of taste and smell is a common and disturbing symptom but people expect to get it back after recovering from the virus. Gena P never got her taste and smell back at all. Keith had an interesting experience with this. He didn’t fully lose his taste and smell, but now he constantly has a distinct taste and smell of chemicals and raspberries. Gena E lost her taste and smell but it came back after four months. Courtney regained her sense of smell and sense of taste; however they are not the same. She is a nurse anesthetist and said that the anesthesia doesn’t smell like it should.
There is a mysterious symptom not listed that needs to be addressed. A number of Long Haulers feel tremors, vibrations, or spasms throughout their body that can’t be explained through tests. It greatly affects sleep, mobility, and mental health. It can also be quite painful.
In May of 2021, Dawson Creek’s writer Heidi Ferrer committed suicide after many months of battling Long-COVID. Her husband, Nick Guthe, after her death continued to fight through research and talking to many other Long-Haulers. He posted her Eulogy to Heidi on her blog and recalls the tremors and vibrations.
“The tremors started in your hands. Small at first. You told me other people in your groups were getting them too. I’ll never forget you literally collapsing in my arms as your whole body shook, but only lasting for a minute or two, they seemed manageable. But then the vibrations started in your chest every night, robbing you of your sleep almost immediately,” he wrote.
After his wife’s death, Guthe set out to discover what these symptoms meant and why so many Long-Haulers experience them. He reached out to Survivor Corps, a nonprofit movement educating COVID-19 survivors and advocating for them. Some top doctors at Yale School of Medicine co-authored a study called “Internal Tremors and Vibration Symptoms Among People with Post-Acute Sequelae of SARS-CoV-2: A Narrative Review of Patient Reports.”They wanted this research to be from the perspective of patients instead of doctors. Many aspects of Long-COVID that are still being discovered, so they collected patient stories about this symptom which has yet to be explained by medicine. Survivor Corps posted on their online support groups a message from Guthe, and received 140 emails and 450 Facebook comments of Long-Haulers experiencing very similar tremors and vibrations.
The doctors from Guthe’s study with Yale organized all of their responses into seven domains and twenty-two themes, along with word clouds from the Facebook comments. The word cloud revealed, that along with the buzzing and vibrating sensation, many people were also experiencing burning and shooting pain. The study anonymously shared some of the comments that they received. Individually, it would be easy for people to dismiss these symptoms, but after seeing the numerous testimonies, side by side, there is no denying the validity of their pain.
One anonymous Long-Hauler said that the spasms cause pain worse than childbirth and that laryngeal spasms cause her to have trouble breathing. Some could see the spasms under their skin and others couldn't. Several describe the sensation like sitting on a speaker with the volume all the way up. A couple of people said that they even feel the vibrations in their brain.
The study also addressed how this symptom affects mental health. One suicidal participant said that they had not slept for fifteen days due to the tremors. Another described it as “internal torture.”
Unfortunately the study didn’t offer any medical answers or remedies, but it did show that this symptom isn’t just one person making it up or in somebody’s head. There were nearly six hundred responses included. This is incredibly validating for those six hundred people, but also tragic that so many people are experiencing this unexplainable symptom.
Nataly is a twenty-five year old graduate student whose life was forever changed in June of 2020. She and her roommate contracted COVID-19 at the same time with very similar, moderate symptoms, but never had to be hospitalized. They were both healthy and active prior to testing positive for the virus. By the end of the two weeks, her roommate was recovering, but Nataly wasn’t. She was expected to return to work by the third week. That’s when things went downhill for Nataly. She began falling frequently and went to the emergency room to get checked out. They tested her for a stroke, but eventually told her that her muscles were deconditioned from COVID. The next day, she began shaking all over randomly and within days couldn’t walk anymore. For months, she was dismissed by doctors, and told it was no big deal. Her tests were negative for seizures or heart problems, so the doctors told her it must be a psychiatric condition.
The therapists Nataly was sent to said her condition wasn’t caused by anxiety or depression, though it did cause her to become anxious and depressed because of how her symptoms affected her life. She stated that she had to beg doctors to keep looking while many of them told her it was all in her head, despite witnessing her episodes firsthand. Flash forward nine months, Nataly has been diagnosed with Chronic Fatigue Syndrome as a result of Long-COVID. She doesn’t have as many shaking episodes anymore and is slowly building her strength back up. Her roommate has become her official caretaker and she’s in the process of applying for disability benefits.
Chronic Fatigue Syndrome
Almost every Long-Hauler included in this project has, or still does experience an unusual level of fatigue. Some of them get better over time, but others develop Chronic Fatigue Syndrome (CFS).
Timothy L. Wong and Danielle J. Weitzer wrote a review of numerous early studies of Long-COVID patients who develop Chronic Fatigue Syndrome. While some of the studies conducted in 2020 may be outdated now, (2022), the scientific research describing CFS, and why many Long-COVID patients develop it, was very informative.
Due to the fact that there aren’t diagnostic tests or treatments for this illness yet, there is a stigma attached to CFS that it’s just people trying to get out of their job responsibilities or being lazy. According to the review, CFS patients react to stressors, even as simple as waking up in the morning, with a rise in heart rate and serum cortisol. These are physical signs that there is something wrong and that the body is going through something very real.
The Institute of Medicine redefined CFS as “systemic exertion intolerance disease.” According to Wong and Weitzer, the criteria is: “a patient must have significant impairment in the ability to engage in pre-illness levels of educational, occupational, personal, or social activities.” The fatigue must last at least six months and the patient must have unrefreshing sleep and post-exertional malaise. Another key symptom is that they have orthostatic intolerance and/or cognitive decline. Many people with CFS also experience chronic pain.
Wong and Weitzer write that the Epstein-Barr Virus (EBV) has been detected in roughly thirty-eight to-fifty-five percent of patients with CFS and is also associated with autoimmune diseases. “One of the most prominent potential causes of chronic fatigue syndrome includes infection with EBV, being highly studied in this setting,” (Wong and Weitzer 418).
The association between Epstein-Barr Virus, Chronic Fatigue Syndrome, and also Long-COVID in general, is so common that it warranted more research. The scientific study entitled, “Investigation of Long COVID Prevalence and its Relationship to Epstein-Barr Virus Reactivation,” set out to discover if there was a connection between the Epstein-Barr virus and Long-COVID symptoms. The Epstein-Barr virus affects ninety-five percent of healthy adults and is mostly latent until an outside infection like COVID-19 reactivates it.
The symptoms that determined whether a subject qualified for the study included: fatigue, insomnia, headaches, myalgia, confusion/brain fog, weakness, rash, pharyngitis, abdominal pain, tinnitus, fever, enlargement of cervical lymph nodes, and hearing loss.
This blind study split its participants into four groups. The “long-term Long-COVID group” was made up of thirty patients who tested positive at least ninety days prior and had at least one Long-COVID symptom. This group tested 66.7% (20/30) positive for the Epstein-Barr virus, (EBV). The “long-term control group” had twenty participants who also met that criteria, but did not have any Long-COVID symptoms. Only ten percent (2/20) of subjects tested positive for it.
Researchers did a similar pairing with short term groups. The “short-term Long-COVID group” had nine subjects who had tested positive at twenty-one to ninety days prior and had at least one Long-COVID symptom. They too, tested 66.7% (6/9) positive for EBV, as opposed to the short term control group, which only tested 11.1% positive.
Every participant, both short and long term, reported similar symptoms: fatigue, insomnia, headaches, myalgia, and brain fog. Some also experienced tinnitus and skin rashes. Two developed Raynaud’s Phenomenon at four and nine months after testing positive for COVID-19. Raynaud’s Phenomenon is a condition which makes part of the body, oftentimes the hands and feet, turn blue or white and go numb due to lack of oxygen. It’s a common symptom among Epstein-Barr viruses in general, so its manifestation in Long-COVID patients makes sense. Those who experienced it without knowing the term, have referred to it as “covid toes.”
An important thing to know about the Epstein-Barr virus, is that if one has genetic markers for autoimmune diseases, a reactivated EBV can allow the dormant autoimmune diseases to develop. For example, a perfectly healthy adult who has a latent EBV, can contract COVID-19, which then reactivates it, and before long they have Lupus or Hashimoto's.
Alexis had Mononucleosis (Mono) as a teenager, and found in the process of searching for a diagnosis, that the Epstein-Barr virus had been reactivated. Her doctors suspected that she developed an autoimmune disease, as utilizing the autoimmune diet was one of the only things that helped her symptoms.
Demographics and Statistics
For this project, two studies were used to examine the statistics and demographics of COVID-19 patients in their recovery. One of them began at the start of the pandemic in Wuhan, China at Jin Yin-Tan Hospital. It is entitled, “1 Year Outcomes in Hospital Survivors with COVID-19: a Longitudinal Cohort Study.”
This study was conducted before anyone was aware of Long-COVID; it was simply tracking the recovery time of 1,276 hospitalized COVID-19 survivors. The researchers performed a series of tests and questionnaires at the six month mark and at the twelve month mark since contracting the virus. They also included a control group of people who matched the demographics, but did not test positive for COVID-19.
It should be made clear that this is not specifically a Long-COVID study and not every survivor in long-term recovery has Long-COVID. The patients in this study were hospitalized with a moderate to severe case, and some of the damage done in the acute stage can take time to heal. However, many of these participants likely had Long-COVID before anybody knew what was wrong and why they weren’t getting better.
The study found that most hospitalized survivors were recovered and in good health at their one year follow-up. But the researchers also discovered that those who were in the COVID-19 cohort were still at a lower health status than those in the control group.
In general, the study found that more people had lingering symptoms at six months, than they did at the one year follow-up. The proportion of patients with at least one lingering symptom went from sixty-eight percent at the six month mark to forty-nine percent at the one year mark. Eighty-eight percent of those who were employed before contracting COVID-19, returned to work at twelve months.
The WuHan hospital survivors with lingering symptoms, illustrates the affect gender can have on Long-COVID symptoms. “Compared with men, women had an odds ratio of 1·43 (95% CI 1·04–1·96) for fatigue or muscle weakness, 2·00 (1·48–2·69) for anxiety or depression, and 2·97 (1·50–5·88) for diffusion impairment,” (Huang et al).
One discouraging statistic, is that more anxiety, depression, and breathing issues were reported at the one year mark than at the six month mark. Huang explains further, what could contribute to this finding:
“The chronic or late-onset psychological symptoms after COVID-19 could be driven by a direct effect of virus infection and might be explained by several hypotheses including aberrant immune response, hyperactivation of the immune system, or autoimmunity,” (Huang et al). They also concluded there are additional lifestyle changes that could be contributing, such as isolation, job loss, or the emotional toll of becoming disabled.
The second study, led by Maxime Taquet, “Incidence, Co-occurence, and Evolution of Long-COVID Features,”addresses questions about the demographics of Long-COVID and the severity of symptoms. The study included 273,618 COVID-19 survivors and used patients based on the criteria of being within six months or less of contracting the virus. There were two cohorts: one made up of COVID-19 patients and the other made up of influenza patients (114,449 influenza patients).
The symptoms considered that of Long-COVID included: breathing difficulties, fatigue, chest/throat pain, headache, abdominal symptoms, myalgia, pain, cognitive symptoms, anxiety, and depression. The study refers to these symptoms as “features,” because some of them are a combination of symptoms and diagnoses. There is an important distinction between the first ninety days, and the period between 90-180 days, that the researchers make:
“If a patient has a feature recorded once in the acute phase of the illness and again a few months later, the latter occurrence would not count toward the incidence at later stages of follow-up,” they said. “This implies that in the 1-180 day follow-up, ongoing incidence after three months represents emergence of new Long-COVID features in an individual with no record of these features before,” (Taquet et al).
The researchers discovered that three months after recovering from COVID-19, patients can still develop brand new features. The study revealed that two out of five participants had symptoms in the three to six month mark they had not previously experienced.
It also concluded that the risk of Long-COVID was higher among females and young adults, as well as in those who had a more severe case. Females were much more likely to have headaches, abdominal symptoms, anxiety, and depression. Males, on the other hand, were significantly more likely to have cognitive symptoms and breathing difficulties.
In terms of age, older patients had more difficulty with breathing, pain, fatigue, and cognitive symptoms. Younger patients experienced more headaches, abdominal symptoms, and anxiety/depression. Elderly patients were more likely in general to develop Long-COVID features. The researchers did note that half of the non-hospitalized patients in the study experiencing Long-COVID features were young adults and children. In addition, they observed that there was no difference in these statistics among races.
2. Hyperbaric Oxygen Therapy
There are many symptoms of Long-COVID, but unfortunately not many known treatments. For symptoms like fatigue, rest is the only thing that helps most patients. Many brain fog patients are at a loss for any relief. There are however, a few routes that one might take in treating Long-COVID.
1. Treat the symptoms individually
The most obvious thing that doctors can do for Long-Haulers right now is to treat their symptoms until they know the root cause. However, hardly any of those interviewed found any relief from medication to treat individual symptoms. Jessica was prescribed steroids, which made her significantly worse. Some of the participants in the tremors and vibrations study, said that they tried Gabapentin, a drug which typically helps nerve damage related tremors, but to no avail. Because of the failure of typically successful medications, many Long-haulers are sent to psychiatrists. With tests coming back negative and no treatment working, many doctors assume that they must be faking it or that it’s in their head, but psychiatrists seem to be of little help as well.
The Royal College of Physicians published a study on Hyperbaric Oxygen Therapy as a treatment of Long-COVID. It’s still early in the study, but the results look hopeful. Hyperbaric Oxygen Therapy (HBOT) involves a hyperbaric chamber that is pressurized to greater than sea level pressure, where the patient breathes 100% oxygen. This therapy has been used in the past for emergency conditions, healing wounds, and even has been used to treat Chronic Fatigue Syndrome.
In their experiment, the researchers studied ten patients who presented with Long-COVID related fatigue. They each received one session per day for ten days with a two day break. The results showed significant improvement with fatigue, cognition, and general function.
Gena E., on her quest to find healing, came across information on HBOT for Long-COVID treatment. She is currently in treatment and has reported good results so far. Gena is finding that she has more endurance, more focus, less fatigue, and better sleep. As of April 8, 2022, her tinnitus and skin burning have also improved. Her brain fog has improved enough to write again.
The only consistent treatment used by Long-Haulers in recovery is supplements. Once some patients realized which ones were working, they informed each other through online support groups, and information quickly spread. Jessica sought help from Functional Dr. Tenesha Wards, (D.C., A.C.N). She is a holistic doctor who specializes in chronic fatigue, chronic pain, Fibromyalgia, and now Long-COVID.
Wards performs genetic testing on her patients first, to find any genetic defects or predispositions they may have. This determines the kind of treatment that she’ll explore. She’s found that almost every Long-COVID patient she’s seen has an active Epstein-Barr virus. Wards explained that sometimes COVID triggers a genetic predisposition, such as poor detoxing, histamine intolerance, or chronic fatigue. Another treatment that she’s found helps is gut repair. She’s seen many Long-COVID patients who are depleted in nutrients due to inflammation in their gut. After Dr. Wards discovers the patient’s underlying predispositions and defects, she prescribes supplements to help in those areas.
“We specify to the patient, but as a broad view, vitamin A, D, K, and Zinc are your big antioxidants,” she said. “I’ve seen a lot of COVID patients with low iron and low copper.”
Jessica takes a mixture of supplements including Zinc, Copper, Turmeric Boswella, Holy Basil, Vitamin C, Vitamin D3, Quercetin, Glutathione, and Cordyceps. She also eats a low histamine diet. Those keep her symptoms at bay, but she experiences flares when exposed to histamines, whether in food or in the air.
As a large number of the people who contract COVID-19 will have Long-COVID, and may become disabled, this presents a significant issue in terms of livelihood. Many people, including Nataly and Jessica, have lost their jobs due to Long-COVID symptoms. As of July 26, 2021, the Biden-Harris administration released Long-COVID Guidance for workers and employers and announced that some patients may be eligible for disability benefits. Individuals must qualify under the ADA Section 504, which states that the impairment substantially limits major life activities and functions. Is Long-COVID always a disability? No. It ranges in severity from patient to patient. But now those who do become disabled have a means to financial stability and health insurance.
The UK Health Security Agency collected information from fifteen studies on the effectiveness of vaccines against the development of Long-COVID, and put their findings in one evidence briefing. Overall, the evidence suggests that fewer vaccinated people develop Long-COVID than unvaccinated people. The Agency explained that three out of four studies that compared Long-COVID symptoms before and after receiving the vaccine, saw improvements in the days and weeks to follow.
One study in the briefing concluded that those who got vaccinated after their diagnosis were less likely to experience Long-COVID symptoms down the road. Alexis described her experience with the Moderna Vaccine. After her first dose, she felt significant relief for a few days, and after the second dose has seen much improvement in her brain fog and fatigue.
“I am more sensitive to things like changes in temperature. I still have some vein issues that have been ongoing, and I still have my rashes,” She said. “But I’m in a lot better shape than a lot of other Long-Haulers,” she said.
The brightest gleam of hope comes from the patients themselves. Many have gotten better over time, or at least have seen some improvement. Nataly still has Chronic Fatigue Syndrome but is managing it and is able to drive again. Jessica has flares of brain fog and occasional fatigue, but it’s not constant anymore. Courtney regained her taste and smell. Jen still struggles with brain fog but she no longer spikes fevers. Zach hasn’t had any more psychological issues. Andrew’s symptoms have resolved. Gena E is turning a corner with the help of supplements and other homeopathic treatments. I haven’t had to use my inhaler in three months. Maybe we’re in it for the “not-much-longer-haul.”
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Keith and Shannon Morris