In medicine, death is commonly considered the worst outcome of illness. As a physician, I have taken care of patients whose conditions and sufferings made their ultimate deaths merciful. Despite my efforts over the past two years to bring awareness to the potential long-term health consequences of having COVID-19, the discussion about COVID-19 has all-to-often been a binary one – you survive or die. But for 10 – 30% of those who have survived COVID-19, they will tell you that they didn’t get their lives back, even though they survived. They suffer from what has been called colloquially, “long COVID” or medically, “post-acute sequelae of SARS-CoV-2 Infection” or “post-acute sequelae of COVID-19 (PAS-C).” In some tragic instances, the health effects following recovery from the acute infection have been so disabling that the person has taken their own life.
The problem with discussing PAS-C is that we don’t yet have a set of criteria for the diagnosis, so studies and reports in the literature may establish different inclusion criteria. Even more concerning to me are all the changes to anatomic structures, physiologic functions and the immune system we are detecting following infection, but don’t yet know whether these changes are reversable or permanent and what problems they may cause long-term, if any.
We also don’t yet know, and likely won’t for years, what all the long-term consequences of infection other than PAS-C may be. As an example, the human papillomavirus (HPV) is the most common sexually-transmitted infection in the U.S. An association between cervical cancer and sexual activity had long been suspected. It was epidemiologically established in the 1960s. HPV was then first identified in cervical cancer specimens in 1985. The role of HPV in causing cervical cancer was then established in the 1990s and the first vaccine to guard against HPV infection was then available in 2006. As another example, the Epstein-Barr Virus (EBV) was first discovered in 1964. In 1968, we determined that EBV was the cause of infectious mononucleosis. In 1976, we established that EBV was the cause of a specific type of lymphoma. Since then, we have identified its causal relationship to a number of other cancers and just this year, we finally established that EBV plays a causative role in the development of multiple sclerosis (MS), raising the possibility that we might be able to eliminate the risk of developing MS by developing a vaccine to prevent EBV infection.
This all becomes a critical issue because I constantly am asked by people whether to take certain steps to prevent COVID-19 infection when they perceive themselves to be at rather low risk for dying. I find that few people are weighing the risks of chronic health conditions resulting from COVID-19 because it is seldom talked about and we don’t yet know what those risks are and who specifically is at risk for developing them. Further, I find that physicians and public health experts often are reluctant to talk about these risks because we don’t yet know much about them and many are hesitant to mention these issues for fear of being accused of fear-mongering or for ultimately turning out to have been wrong.
So, I am starting an entire blog series on what we know, what we think we know, what we are seeing and what we fear could be long-term health implications from having been infected with SARS-CoV-2, and most recently, fears related to people being repeatedly infected with SARS-CoV-2.
I am dedicating this series to my mom – Charlene Pate. I told my mom some time ago that I was thinking about doing such a blog series. She thought this would be great. In fact, she has friends with various issues following COVID-19 and she knew that many were interested in answers and were loyal readers of my blog.
As I dealt with the other demands on my time, I kept putting this off and putting it off. Its not easy to explain this to the public. Many of these studies are complicated and will take a lot of effort on my part to try to make them understandable. Other studies show concerning things, but we don’t know what they mean. Nevertheless, my mom kept asking me and gently pushing me in the ways that moms do. So, now I am embarking on this intimidating subject matter and I do so dedicating this to my mother who has always been my supporter and encourager. Thanks, Mom!
Now, before we go further, let’s set out the understandings:
Here’s what I am committing to:
- I have no agenda here. I am not trying to get anyone to do anything. I am not advocating for mask or vaccine requirements or mandates as part of this blog series. The purpose of the blog series will not be to scare you into wearing masks or getting vaccinated. While I often have opinions and usually freely share them, this blog series will not be for opinions. I am just going to try to share studies, data and facts. You can do with them what you will.
- I am going to present a lot of information. I will try to provide plenty of references for those who want to read the studies for themselves or want to learn more.
- I am going to try to translate the medical and scientific terms for you as much as I can, but I am sure that there will be terms or phrases I will overlook, so feel free to submit a comment asking me to explain whatever the term, phrase or concept is that you don’t understand. And, if you don’t understand it, that means many others reading it won’t understand it, so you will be doing them a favor by asking.
- I am going to try to resist editorializing or adding my opinions to these blog posts. However, this will be hard for me to do and I may slip.
- Keep in mind that just because a study shows x or y happens, it doesn’t mean that will happen to you. There is still a lot we don’t understand about this virus and the disease it causes. What will or will not happen in the event you have been or will get infected has a lot to do with your age, your gender, your underlying medical conditions, your genetics, the specific variant you were or will be infected with, the dose of virus you were infected with, whether you were vaccinated prior to being infected, whether this is a reinfection, whether you were treated with antivirals in a timely manner, and no doubt many other factors.
- I am a board-certified internal medicine physician. I know a little about a lot of diseases and a lot about a number of diseases, but I don’t know everything about anything. So, I may from time to time make a mistake or I may overlook a point that a specialist in a particular area would think important. Therefore, I invite experts in all of these various specialties, as well as virologists, immunologists and other scientists to please write in comments to either correct me or to amplify some points with my readers. I will share those comments with you, correct any of my mistakes and may even write further about an area that I am getting a lot of comments about.
- Science evolves. Sometimes science proves something we thought we knew wrong. Sometimes, science further explains or gives us new perspective on something that we already know some things about. This is certain to be the case with this blog series. I may present a study next week that may be corrected, clarified or expanded upon next month. If so, I will update you.
- I probably read studies 4-5 hours a day on average. Even so, I miss plenty of them. So, if I miss something that you have seen or think is important, send me the link in a comment.
- Some of the studies I will cite to will be peer-reviewed and published in respected journals. Because this area is so rapidly evolving, I will also be presenting some studies that have not yet been peer-reviewed. Obviously, if I have already determined that I think there are concerns with the study, I will not use them. However, keep in mind, when I am presenting a study that has been published on a pre-print server, but not yet peer-reviewed, you should realize that reviewers might subsequently find issues with the study.
- This effort is already so overwhelming for me that I am not sure how much I will get into the study methodology and study design or limitations of the studies, but I will certainly make an effort to try to remember to do so. I’ll also try to remember to address some of the statistical methods that we use to help you in interpreting the data without making you think you are taking a statistics class.
- I am going to try to present these studies and the information we are getting in some kind of logical manner – I suspect by writing about the organs or organ systems that are involved, e.g., a blog on cardiovascular effects, another on neurological effects, etc. But, please understand that in medicine, these distinctions can be blurry. For example, a stroke is generally thought of as a neurological problem, but some strokes are caused by cardiovascular issues. So, I am sure that my efforts to categorize these findings will not be perfect and will overlap between blog posts.
- No doubt, I will write something about an organ system and then something new will come out weeks later. So, I may end up revisiting a prior blog post and if the article is significant enough, I might devote an entire blog piece to that article.
Now, here is your part:
- Please be sensitive to other readers. There are many who are suffering with profound effects that they don’t understand and they are looking for answers, and more importantly, hope. Please be kind. Please don’t diminish what they are experiencing and what they are feeling. If you have had COVID and you feel 100%, then thank your lucky stars, but don’t dismiss what others are experiencing.
- Keep things in perspective. Just because I share a study with some concerning health effects doesn’t mean that you have them or will get them. It doesn’t even mean that if you have similar symptoms that whatever I am presenting is what is wrong with you. The same symptoms can be caused by wildly different disease processes, for example, light-headedness and dizziness upon arising from bed can be POTS (we’ll cover that in an upcoming blog piece) or benign positional vertigo involving entirely different body systems and treated entirely differently. So, don’t self-diagnose from these blog pieces. Certainly, feel free to point it out to your doctor and inquire whether this might be applicable to your case, but don’t assume so on your own.
- As I stated above, I am just going to try to present studies, data and information. If some of it upsets you, I am sorry; that is not my intent. But, like I will stick to facts, I will ask you to do so as well. This is not the place to voice your skepticism of the virus, who or what is responsible for it, what the government is or is not doing, or the latest conspiracy theory. There are other venues for that. This blog series is merely an effort to try to equip people with knowledge so that they can make their own health decision in a more informed manner.
So, for the next blog piece, I will cover some terms and concepts that you will need to understand for almost all of the studies we are going to review.