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The Long Haul, Part 1: What Long COVID Is Like

This is the first part of a multi-part blog series on long term morbidity associated with COVID-19 infection (how many parts there will be in the series remains to be determined). When public health scientists assess the impact of a disease on society, they consider both mortality as well as morbidity. In fact, the CDC’s primary assessment of US health is a publication called the Morbidity and Mortality Weekly Report. This blog series was prompted, in part, by repeated assertions by vaccine nay-sayers that since the mortality of COVID is only about 1.5% of those infected (they usually cite a false and much lower mortality rate), the vaccines and mandates are unnecessary. To that naive statement I make three points that the nay-sayers typically ignore:

  1. The Spanish flu had a similarly low mortality rate as COVID-19, but in just 24 weeks during its second wave, it killed more people around the world than were killed in the 10 years of WWI and WWII combined. Hence, just looking at the percent of infected people who die does not tell the whole story if you do not also mention the total number of people infected. One percent of a billion people is a very large number, for example.
  2. By focusing only on the low mortality rate, the vax nay-sayers are engaging in a logical fallacy called “confirmation bias.” That is, they totally ignore the statistics that do not support what they want to believe. What they ignore here is the cost incurred by disease survivors, or the morbidity. Morbidity rates usually swamp mortality rates and, as we shall see in this blog series, long COVID can cause a disproportionate cost to individuals and society in terms of damaged health, lost productivity, increased burden on health systems (which also affects care of critical non-COVID patients) and insurance payors, lost earnings, interrupted careers, and even delayed deaths that are not attributed to COVID, such as suicide, which I discuss below.
  3. Last December, just before the vaccines first rolled out, I reported that COVID-19 deaths had become, by far, the number one killer in the US, which contradicts the “negligible death rate” narrative of the nay-sayers. At that time COVID deaths far outpaced deaths due to cancer and heart disease, the previous top two causes of death in the US. That high COVID death rate dropped because of the vaccines. These facts put the lie to anti-vaxer’s claims that we do not need vaccines or public health mandates because the death rate from COVID is low. The COVID death rate had become very high, but is now much lower precisely because of the vaccines and mandates.

In this post, Part 1 in the series, I relate what long COVID is like to some long haulers. In future posts, I will focus on the costs of long-term COVID, and on the specific devastating health effects long-haul COVID can have on the neurological system, on the kidneys, lungs, and on new-onset Type 1 diabetes. And I will discuss what we have learned about the causes of long COVID and how to treat or manage it.

What is it like for long haulers? I began this blog in April 2020, and one of the first posts I made was about the experience of an emergency room doctor who was on the front lines of the early pandemic working in an ER in NYC, which was very hard hit by the pandemic. She caught the disease and spent a couple of weeks in the ICU recovering from it. But, something was not right with her after she was discharged from medical care, and she was re-admitted to an in-patient psychiatric unit to treat her mind. After a few weeks, she was released to convalesce at her sister’s home. But, she was still not right in her mind and eventually shot herself in the head. Her suicide was not counted as a COVID death. There have been other post-COVID suicides since then.

There are the recent post-COVID suicides of Texas Roadhouse CEO Kent Taylor and "Dawson's Creek" writer Heidi Ferrer and several others, which reveal a heightened risk of suicide as a sequelae of long COVID.

Sometime early in the pandemic, a healthy, young journalist who had recently graduated from journalism school also caught the disease. She eloquently wrote about the ordeal, which began in full four weeks after she had been diagnosed and two weeks after she no longer tested positive for the virus. She wrote how her body shook for five days before checking into a North Carolina hospital not knowing what was wrong. She wrote that two nights before going to the ER, and after being “cured” from COVID-19, she was jolted awake by what felt like a “brain zap.” She staggered into the hallway which she described feeling like it was on a funhouse tilt. She said she felt like she was in a Salvador Dali painting, “distorted and oozing.” When she tried to speak to her husband, the words came out drowsy and slow. I personally found the description of her feelings interesting since a friend of mine who had experimented with drugs in her earlier life once told me about tripping on LSD and feeling like her “face was melting like in a Dali painting.” For the young journalist, long COVID was somewhat similar to the experience of my friend on LSD.

Like 10-30% of the ~200 million, globally (a large number), who have survived COVID-19, the journalist did not get better after she was declared to be COVID-free,  and in fact she said that what came next was much worse than the disease. After a month of non-stop post-COVID malaise, she found herself in the emergency room complaining that she had a “shaky, electric feeling” in her stomach, and that she could not think or sleep. Eight months later the waves of illness had not let up. She was one of the early cases of long COVID, which we now know occurs in 10-30% of COVID survivors (although one study from Italy claimed that >50% of COVID survivors experienced symptoms at least four months after their infection).

The journalist wrote in July 2021, “Since December (2020), I've seen 15 specialists, received eight scans, visited three ERs and--even with insurance--spent $12,000 seeking a return to normal life. Since February, I moved across the country (from North Carolina) to receive treatment from a post-COVID recovery clinic at (the) Keck School of Medicine at the University of Southern California. The clinic refers its patients to specialists depending on their symptoms and provides a social worker. I receive weekly treatment from a physical therapist, occupational therapist and neurologist there.”

“I've had more than 50 symptoms ranging from cognitive impairment, insomnia, vertigo, extreme light and sound sensitivity, and fatigue, to convulsion-like shaking, slurred speech, hair loss, muscle weakness, anxiety.” She said that she was too “foggy” to read or even to watch TV news, which was her occupation. She was unable to write for six months, and had not had a symptom-free day since November 6, 2020, the day she tested positive for Covid-19. Most of these symptoms occurred simultaneously.

She writes on, “Before my illness, I never had any thoughts about suicide. This changed after I got sick. I'm no longer in this dark place, but the months it held me hostage I inched closer to the edge than I ever wished to be. As my brain fog intensified, I developed such a palpable anxiety, it brought with it new compulsive behaviors like "trichotillomania," or hair pulling. The days blended into one dream-state. I had only what I can describe as brain zaps. I'd wash my hair, forget, then wash it again. The further I slipped away from reality, the deeper my depression became.”

“I found myself researching death-with-dignity laws. I learned that Northern European countries have some of the most lenient.” She entertained suicide for the first time in her life. Other post-COVID patients have also described having thoughts of suicide and some have acted on that.

The experience of this journalist and a few million others like her quickly became noticed anecdotally by the medical establishment and the patients were referred to as “long haulers.” Their constellation of symptoms became known as “long COVID,” or more formally Post-Acute Sequelae of COVID-19 (PASC). As long COVID became increasingly recognized, the medical establishment realized that it was something entirely new and that they had little clue on how to deal with it other than try to manage the myriad symptoms, now numbering at more than 200. We now know that long haulers can suffer months of “brain fog,” persistent headaches, chronic fatigue-like symptoms, breathing problems, lung failure (sometimes requiring transplants), new-onset diabetes, depression and/or anxiety, dizziness, muscle and joint pain, and more. These occur in 10-30% of old and young infected people, and even in those who had mild COVID-19.

Medical science is slowly catching up, but progress is slow, not for lack of effort, but simply because medical research takes time. The very recent FAIR Health study of COVID-19 patients, the largest to date, analyzed health records of nearly two million people who have been infected with the virus in the US and found that hundreds of thousands have sought care for new health conditions after their acute illness subsided. New research points to neuropsychiatric changes in Covid-19 survivors potentially due to brain inflammation or to a disruption of blood flow to the brain. Then there are other theories, partly borne out by an Oxford study, that the virus affects serotonin and dopamine neurotransmitters, affecting brain function and physiology. A recent case published in the Journal of Psychiatry Neuroscience and Therapeutics reported that "autoimmune-mediated psychosis" caused a 30-year-old without previous health or psychological conditions to become delusional after recovering from COVID. In response to this increasing concern over long COVID, NIH launched a large nationwide study of long COVID and recently  awarded $470 million to New York University Langone Health. This NIH REsearching COVID to Enhance Recovery (RECOVER) Initiative aims to learn why some people have prolonged symptoms or develop new or returning symptoms after they recover from the acute phase of infection.

In future posts in this blog series, I will cover in more detail what we have learned to date about long COVID. Since the data keep coming in, I cannot predict when this series will end.

So, stay tuned and please ask questions.

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